Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

[sherri swanson]

Hi Susan,

Looks like 2003 was popular year. Too bad it was for CML.  The good news,
we keep fighting it everyday.

Sherri, Northern Illinois

On Thu, Sep 26, 2019 at 7:45 PM 'educatorsusan' via CMLHope <
cmlhope@googlegroups.com> wrote:

> I was diagnosed in 2003, too!
>
> Susan Rosenthal
> Miami, Florida
>
> On Sep 26, 2019, at 7:43 PM, sherri swanson 
> wrote:
>
> Hi Ken,
>
> Glad to hear your doing well. I too take Gleevec but take 600mg. Like you
> I was DX in 2003 and have been on 600mg since then. My blood is almost
> undetectable as well. I guess the CML just wants to let me know it's there.
> I just let it know I'm still here too.
>
> Have a great weekend,
>
> Sherri
>
> On Thu, Sep 26, 2019 at 10:44 AM ksnwo...@prodigy.net <
> ksnwo...@prodigy.net> wrote:
>
>> I was diagnosed in 2003. I am still on 400 mg of gleevec and tolerating
>> it well. My semi- annual blood test remains almost untraceable, but still
>> there. Greetings to all cml'ers. Keep the faith. Nick
>>
>>
>>
>> *Sent from my LG V40 ThinQ, an AT 5G Evolution capable smartphone*
>>
>> -- Original message--
>> *From: *cmlhope@googlegroups.com
>> *Date: *Thu, Sep 26, 2019 5:10 AM
>> *To: *Digest recipients;
>> *Cc: *
>> *Subject:*[CMLHope] Digest for cmlhope@googlegroups.com
>> <+cmlhope@googlegroups.com> - 1 update in 1 topic
>>
>> cmlhope@googlegroups.com
>> <https://groups.google.com/forum/?utm_source=digest_medium=email#!forum/cmlhope/topics>
>>  Google
>> Groups
>> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
>> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
>> Topic digest
>> View all topics
>> <https://groups.google.com/forum/?utm_source=digest_medium=email#!forum/cmlhope/topics>
>>
>>- Acaria health
>><#m_-8593631717912210402_m_590827347862330147_group_thread_0> - 1
>>Update
>>
>> Acaria health
>> <http://groups.google.com/group/cmlhope/t/361f59dca9d0923f?utm_source=digest_medium=email>
>> icandoallttc >: Sep 25 12:22PM -0400 <%3cicandoall...@aol.com>
>>
>> Hello everyone
>> I had the strangest thing happen to me in reference to my Ponatinib. Is
>> anyone on Ponatinib ?
>> I got a letter telling me ascaria health would be handling my drug from
>> now on. I did t ask for this so decided to wait until biologics called to
>> refill my prescription. Well they called and asked me if I was ready for
>> refill. Never mentioned as aria and my medicine came As usual. I was so
>> happy. So my question is should I notify someone of this as it seems like a
>> fraud to me. This medicine is very expenvive. It is 17,000 $ a month. Has
>> anyone ever have this happened? I???ve researched google with no answers.
>> Norm I remember when you helped me run the tasigna group. I couldn???t
>> take it. Talk later all the news. You and your wife love are so up lifting.
>> Yes love you so very much.
>> 
>>
>> My Motto:
>> Faith and Pills
>> With Love
>> Jeanie
>> free
>> Christian
>> Dx 1/2004 CML Leukemia
>> Back to top <#m_-8593631717912210402_m_590827347862330147_digest_top>
>> You received this digest because you're subscribed to updates for this
>> group. You can change your settings on the group membership page
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>> <https://groups.google.com/d/msgid/cmlhope/qvj3s9

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

[sherri swanson]

Hi Ken,

Glad to hear your doing well. I too take Gleevec but take 600mg. Like you I
was DX in 2003 and have been on 600mg since then. My blood is almost
undetectable as well. I guess the CML just wants to let me know it's there.
I just let it know I'm still here too.

Have a great weekend,

Sherri

On Thu, Sep 26, 2019 at 10:44 AM ksnwo...@prodigy.net 
wrote:

> I was diagnosed in 2003. I am still on 400 mg of gleevec and tolerating it
> well. My semi- annual blood test remains almost untraceable, but still
> there. Greetings to all cml'ers. Keep the faith. Nick
>
>
>
> *Sent from my LG V40 ThinQ, an AT 5G Evolution capable smartphone*
>
> -- Original message--
> *From: *cmlhope@googlegroups.com
> *Date: *Thu, Sep 26, 2019 5:10 AM
> *To: *Digest recipients;
> *Cc: *
> *Subject:*[CMLHope] Digest for cmlhope@googlegroups.com
> <+cmlhope@googlegroups.com> - 1 update in 1 topic
>
> cmlhope@googlegroups.com
> 
>  Google
> Groups
> 
> 
> Topic digest
> View all topics
> 
>
>- Acaria health <#m_590827347862330147_group_thread_0> - 1 Update
>
> Acaria health
> 
> icandoallttc >: Sep 25 12:22PM -0400 <%3cicandoall...@aol.com>
>
> Hello everyone
> I had the strangest thing happen to me in reference to my Ponatinib. Is
> anyone on Ponatinib ?
> I got a letter telling me ascaria health would be handling my drug from
> now on. I did t ask for this so decided to wait until biologics called to
> refill my prescription. Well they called and asked me if I was ready for
> refill. Never mentioned as aria and my medicine came As usual. I was so
> happy. So my question is should I notify someone of this as it seems like a
> fraud to me. This medicine is very expenvive. It is 17,000 $ a month. Has
> anyone ever have this happened? I???ve researched google with no answers.
> Norm I remember when you helped me run the tasigna group. I couldn???t
> take it. Talk later all the news. You and your wife love are so up lifting.
> Yes love you so very much.
> 
>
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> free
> Christian
> Dx 1/2004 CML Leukemia
> Back to top <#m_590827347862330147_digest_top>
> You received this digest because you're subscribed to updates for this
> group. You can change your settings on the group membership page
> 
> .
> To unsubscribe from this group and stop receiving emails from it send an
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>
> --
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> 
> .
>

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2 topics

[sherri swanson]

Hi Norm,

I am glad to see that you are doing well. I have been having trouble with
my heart too and the doctor thought it might be from the Gleevec, but I too
have a history of heart issues in my family, and told the doctor I want to
go with that. The god news, I have not had any heart attacks or surgeries
on my heart and I hope to keep it that way.
I have been on Gleevec for 18 years and have had every side effect there is
from it more time than I can count. I really enjoy the eye bleeds. Those
are the best when I go out to the store and people stare at me and wonder
who punched me in the eye? At least it doesn't hurt, it is just unsightly.

I'm glad to hear that you got to walk you daughter down the isle and I'm
sure she was thrilled to have you there on her special day. I beat my
husband to retirement too. I've been retired for 15 years, and in the
beginning I didn't know what to do with myself.  Then my husband said he
was going to retire 5 years after I was retired and he was home about a
week before I wanted to go back to work. 

All in all life is good as you said and I am glad to see each day. Like
you, I am trying to understand why each day there is a new pain but I
refuse to let the pain stop me. I just keep going and never give in to the
pain. Until the end of the day when I put my feet up. I don't have cat like
reflexes, I am more like a pinball game. I tend to get stuck in the doorway
and bounce around or bounce off the wall into the other wall. I find it
easier to get around the house that way. So now I am going to play water
volleyball and have a good time.

Hope you have a great day and keep those cat like reflexes working.

Sherri

On Tue, Sep 17, 2019 at 7:50 AM N Quade  wrote:

> I am still here and hanging in.
>
> No longer on Tasigna and now on Sprycel.
>
> The Monday after Thanksgiving I had a quadruple bypass and my doctor said
> that the Tasigna could be a contributing factor in my heart issues. I have
> a history of heart disease in my family so I take that with a grain of
> salt. Well, no salt anymore.
>
> I was home for about five days and had to get 911 to send an ambulance
> because I was passing blood and almost pulled an Elvis in the bathroom.
>
> Had to get 7 units of blood and three bleeding ulcers ffixed. Seems taking
> Aleve for joint pain over a long period will eat hole in your stomach.
>
> The best news is I was able to walk my daughter down the aisle for her
> wedding this past March.
>
>
>
> My wet macular degeneration is mostly stable but did have issues with both
> eyes and am getting shots in them. No more leaks as of now but have to
> “see” the retina doctor about every 8 weeks now.
>
>
>
> I set my retirement date and am looking forward to the end of the year and
> starting the next chapter in my life.
>
> My spouse had her job outsourced to India so she beat me to retirement.
>
>
>
> We still have our rescue wiener dog and he is a hoot. I do think he is a
> bit confused with my wife not working and is missing out on his normal 22
> hours of sleep.
>
>
>
> I just got my latest numbers from my last visit to MD Anderson and have
> not looked yet. They had me on the smallest Sprycel dose and my number
> started rising so he upped it to 50mg and I go in every three months now. I
> am going on 17 years as a survivor and 15 years since I was declared in
> blast .
>
>
>
> All in all, life is good. I have determined that aging is not for sissies.
> I am still struggling to understand why when I wake up and something hurts
> for no reason. Why is it that it takes a bit for my legs to understand
> their function when I stand up and tell them to walk. I do have some ideas
> about being safer such as wearing a helmet so I don’t bust my head if I
> were to fall. Now if I could just figure out how to make a functioning roll
> cage to keep me from hurting myself should my legs fail to respond in a
> timely manner. I am not sure how long my cat like reflexes will keep me
> from harms way.
>
>
>
> I will check in more often.
>
>
>
> Norm
>
>
>
> Sent from Mail  for
> Windows 10
>
>
> --
> *From:* cmlhope@googlegroups.com 
> *Sent:* Tuesday, September 17, 2019 5:10:01 AM
> *To:* Digest recipients 
> *Subject:* [CMLHope] Digest for cmlhope@googlegroups.com - 7 updates in 2
> topics
>
> cmlhope@googlegroups.com
> 
>  Google
> Groups
> 
> 
> Topic digest
> View all topics
> 
>
>- Not getting any mail <#m_6623427294975379539_group_thread_0> - 6
>Updates
>- Is this correct <#m_6623427294975379539_group_thread_1> - 1 Update
>
> Not getting any mail
> 

Re: [CMLHope] Re: Not getting any mail

[sherri swanson]

Hi Jeanie,

I'm still here too. Just been doing things and we, my husband and the dog
moved this year. I'm getting to old for that moving stuff.

My Gleevec is keeping my CML in check and has been for about 17 years. WOW,
that's a long time.

Hope everyone is doing well and has enjoyed the summer.

Sherri
Northern  Illinois

On Tue, Sep 17, 2019 at 8:49 AM kevin.l.willi...@gmail.com <
kevin.l.willi...@gmail.com> wrote:

> Hi Jeanie,
>
> I received my CML medicine from Acaria in the past with no issues. I think
> many insurance providers are requiring that patients go through mail order
> pharmacies like Acaria to save money.
>
> On Monday, September 16, 2019 at 8:52:38 AM UTC-7, icandoallttc wrote:
>>
>> Hello
>> I am not receiving any mail from group. Has this group shut down.
>> Anyway Igor a letter in the mail saying AcariaHealth would handle my
>> Ponatinib from now on. I never heard from them and think it’s fraud. Anyone
>> else heard this. Hope everyone is great.
>>
>> My Motto:
>> Faith and Pills
>> With Love
>> Jeanie
>> free
>> Christian
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/ 2015 15 mg
>> New Doctor--Dr Martine Extermann
>> Moffitt Cancer  center sept 2017
>> Dr Balducci retired
>> Dr Gedia PCD
>> 0 CBL. ABL
>> July 2018 dx with thyroid disease tsh 13
>> T4-normal t3-normal
>>
> --
> --
> [CMLHope]
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> -
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Re: [CMLHope] Got a sore won’t heal ?

[sherri swanson]

Hi Jeanie,

You should see the doctor. It sounds like something you should not fool
around with. A year ago I got bit by a mosquito while walking the dog, and
that bite made me so sick that I still have not fully recovered from it.
This year I have been dealing with pneumonia and colds that won't go away,
and not to mention infections. I've been able to stay positive, but it's
been a long winter and I am very happy that spring is here if only on the
calendar in my area right now.
I hope everyone is doing well and looking forward to spring. Jeanie, keep
us posted on your sore and your lilly's.

Sherri


On Sat, Mar 30, 2019 at 11:44 PM 'educatorsusan' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Jeanie:
>
> Could it be a tic bite?
>
> Please see a doctor, though!
>
> Hugs,
> Susan Rosenthal
>
> On Mar 31, 2019, at 12:30 AM, bkbarney via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
> Jeannie,please go to a doctor and have it looked at. Whatever it is, bug
> bite, spider bite, or whatever..it does not sound good. could be infected
> with the rash?? Anyway...I am worried about you. you take good care. I know
> it is hard to gather the energy to go to the doctor..but it sounds like you
> need to have it looked at!!  Love to you and to all. I have had a rough go
> of it mysel for the last three months..influenza, complications etc...still
> staying positive...but it's been a long winter.. grateful for Spring to
> arrive.!
>
>
> 18's and hugs,
>
> Beth
>
>
> -Original Message-
> From: 'Jeanie' via CMLHope 
> To: cmlhope 
> Sent: Sat, Mar 30, 2019 12:46 pm
> Subject: [CMLHope] Got a sore won’t heal ?
>
>
> Hi all
> I pray everyone is good and having s wonderful spring. When my lilies
> start blooming I know we ate in for a great spring
> I have developed a sore on my tummy and I thought it must have been a big
> bite. It is very painful and developed a black scab and red rash. I never
> had anything like this before so was wondering if any sn this list had had
> this experience.
> Millie told me not to long before she died she developed a sore on the
> bottom of her foot that wouldn’t heal.
> I don’t have diabetes so if anyone has had this how did you treat it and
> etc.
> haven’t brought myself up to going to Dr.
> I still miss my dr from Moffitt who was Dr Balducci.  They have turned my
> case over to a nurse.
> Let us hear from everyone. Love you so very much
> Jeanie
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> free
> Christian
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/ 2015 15 mg
> New Doctor--Dr Martine Extermann
> Moffitt Cancer  center sept 2017
> Dr Balducci retired
> Dr Gedia PCD
> 0 CBL. ABL
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
> --
> --
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Re: [CMLHope] Hi Shaun question

[sherri swanson]

Happy Thanksgiving to all my CML friends. May you have a blessed day with
family and friends today. And remember those we have lost.

Sherri

On Thu, Nov 22, 2018 at 6:03 AM myvety2k via CMLHope <
cmlhope@googlegroups.com> wrote:

> And the same to you also Beth and my other CML friends.
>
> greenie
>
>
> -Original Message-
> From: bkbarney via CMLHope 
> To: cmlhope 
> Sent: Wed, Nov 21, 2018 10:22 pm
> Subject: Re: [CMLHope] Hi Shaun question
>
> Hi Shaun and all my  CML buddies here... Just wanted to wish everyone a
> peaceful and Joyful Thanksgiving. I know the holidays can be very grief
> inspiring when we have lost those we love both recently and in the past..
> As I reflect upon the things I am most thankful for this holiday season,
> Marty is one of them. So are each of you who read what I right and even if
> you do not respond, say prayers for me and the rest of us.
>
> Wishing you all a happy holiday.
>
> !8's and love,
>
> Beth
>
>
> -Original Message-
> From: 'Jeanie' via CMLHope 
> To: cmlhope 
> Sent: Wed, Nov 21, 2018 11:59 am
> Subject: [CMLHope] Hi Shaun question
>
>
> Hi Shaun
> I know you are in a lot of grief and if you don’t feel like talking about
> I will understand.
> I have never feared death but always feared that I would be in a lot of
> pain while dying. My question is did they give your dad pain meds before he
> went into hospice?
> I miss him so much as he was my advisor as well as my friend.
> Prayers to you and yours
> Jeanie
> My Motto:
> Faith and Pills
> With Love
> Jeanie
> free
> Christian
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/ 2015 15 mg
> New Doctor--Dr Martine Extermann
> Moffitt Cancer  center sept 2017
> Dr Balducci retired
> Dr Gedia PCD
> 0 CBL. ABL
> July 2018 dx with thyroid disease tsh 13
> T4-normal t3-normal
>
> On Nov 19, 2018, at 9:52 PM, Marty Gartenberg  wrote:
>
> Hi Sherri,
>
> This is Shaun.  My family and I greatly appreciate your heartwarming
> gift.  Thank you so very much for that.  My Mom (his wife, Rachelle) sends
> her thanks, as well.
>
> Regards,
> Shaun
>
> On Wed, Nov 14, 2018 at 8:27 PM sherri swanson <
> swanson.sherri...@gmail.com> wrote:
>
> Hello Shaun,
>
> I am so very sorry to hear about your dad. He was such a kind and gentile
> man and he will be missed by many.  I wanted to let you know that I have
> planted a tree in his name in Israel. May this serve as a living tribute to
> his memory. You and your family are in my thoughts and prayers. Marty will
> always be in my heart and on my mind.  My heart is broken knowing I will
> not receive another message from Marty and we will no longer share share
> photos.
>
>
>
> *As long as we live, they too will live; for they are now are a part of
> us; as we remember them. *
>
> Regards,
>
> Sherri Swanson
>
>
>
>
>
> On Wed, Nov 14, 2018 at 6:29 PM Marty Gartenberg  wrote:
>
> Hi everyone -
>
> This is Marty's son, Shaun, again.  Thank-you all so much for all the
> stories, kind thoughts, wishes, and prayers for my Dad and our family.  We
> are all so grateful to know how loved he was and how he was able to touch
> so many lives in a profound way.
>
> Hi Wayne - please do not cancel this thread.  I am still checking in on it
> and relaying to rest of my family.  Just as he helped others, you all are
> helping us, and we appreciate that, so much.
>
> Regards,
> Shaun
>
> On Wed, Nov 14, 2018 at 7:33 AM Wayne Becken  wrote:
>
> Please cancel.  Subscriber is deceased.
>
>
> *From:* cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com]
> *Sent:* November-14-18 5:14 AM
> *To:* Digest recipients
> *Subject:* [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1
> topic
>
> cmlhope@googlegroups.com
> Google Groups
> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
> [image: Image removed by sender.]
> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
> Topic digest
> View all topics
> ·   Update on Marty G
> <#m_1282255373636162916_aolmail_m_-1535638059080225632_m_-4175740522591615812_m_-1370835557443599334_m_5931007409515620720_m_2008183646449477958_m_-7010965656298477394_m_-4973846576126929945_group_thread_0>
> - 1 Update
> Update on Marty G
> <http://groups.google.com/group/cmlhope/t/6cc017786923e7b6?utm_source=digest_medium=email>
> Tracie Camlin : Nov 13 06:50AM -0600
>
> Dear Shaun and Family,
>
> I am so sorry for your loss. He was truly an amazing person who ins

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1 topic

[sherri swanson]

Hello Shaun,

I am so very sorry to hear about your dad. He was such a kind and gentile
man and he will be missed by many.  I wanted to let you know that I have
planted a tree in his name in Israel. May this serve as a living tribute to
his memory. You and your family are in my thoughts and prayers. Marty will
always be in my heart and on my mind.  My heart is broken knowing I will
not receive another message from Marty and we will no longer share share
photos.



*As long as we live, they too will live; for they are now are a part of us;
as we remember them. *

Regards,

Sherri Swanson





On Wed, Nov 14, 2018 at 6:29 PM Marty Gartenberg  wrote:

> Hi everyone -
>
> This is Marty's son, Shaun, again.  Thank-you all so much for all the
> stories, kind thoughts, wishes, and prayers for my Dad and our family.  We
> are all so grateful to know how loved he was and how he was able to touch
> so many lives in a profound way.
>
> Hi Wayne - please do not cancel this thread.  I am still checking in on it
> and relaying to rest of my family.  Just as he helped others, you all are
> helping us, and we appreciate that, so much.
>
> Regards,
> Shaun
>
> On Wed, Nov 14, 2018 at 7:33 AM Wayne Becken  wrote:
>
>> Please cancel.  Subscriber is deceased.
>>
>>
>>
>>
>>
>> *From:* cmlhope@googlegroups.com [mailto:cmlhope@googlegroups.com]
>> *Sent:* November-14-18 5:14 AM
>> *To:* Digest recipients
>> *Subject:* [CMLHope] Digest for cmlhope@googlegroups.com - 1 update in 1
>> topic
>>
>>
>>
>> cmlhope@googlegroups.com
>>
>> Google Groups
>> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
>>
>> [image: Image removed by sender.]
>> <https://groups.google.com/forum/?utm_source=digest_medium=email/#!overview>
>>
>> Topic digest
>> View all topics
>>
>> ·   Update on Marty G
>> <#m_-1370835557443599334_m_5931007409515620720_m_2008183646449477958_m_-7010965656298477394_m_-4973846576126929945_group_thread_0>
>> - 1 Update
>>
>> Update on Marty G
>> <http://groups.google.com/group/cmlhope/t/6cc017786923e7b6?utm_source=digest_medium=email>
>>
>> Tracie Camlin : Nov 13 06:50AM -0600
>>
>> Dear Shaun and Family,
>>
>> I am so sorry for your loss. He was truly an amazing person who inspired
>> and supported so many of us. His strength and courage held me up at times
>> he didn't even know about. He will be missed. Blessings and much love to
>> you and your family.
>>
>> Best Regards
>> Tracie Mulvaney
>>
>> On Sun, Nov 11, 2018, 3:24 PM rszim0702 via CMLHope <
>>
>> Back to top
>> <#m_-1370835557443599334_m_5931007409515620720_m_2008183646449477958_m_-7010965656298477394_m_-4973846576126929945_digest_top>
>>
>> You received this digest because you're subscribed to updates for this
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>> To unsubscribe from this group and stop receiving emails from it send an
>> email to cmlhope+unsubscr...@googlegroups.com.
>>
>>
>>
>> --
>> --
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>> -
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>>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -
>
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&g

Re: [CMLHope] Hello

[sherri swanson]

Hi Marty,

I'm still here. A little slower than I was before, a few more aliments, but
that's okay too.  Hope you're doing well.

L'chaim

Sherri


On Fri, Mar 9, 2018 at 3:12 PM, Marty Gartenberg  wrote:

> Hello, hello... Is anyone out there?
>
> 18's,
>
> Marty
>
> --
> --
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> A support group of http://cmlhope.com
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Re: [CMLHope] Right hand numb

[sherri swanson]

You could you be pinching your nerve.  I sometimes get that in my pinkie
finger on my right hand. I also get it on my index finger too.  Just a
thought.

Sherri

On Wed, Sep 27, 2017 at 8:57 AM, 'Susan Zimmerman' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Sorry Jeanie,
> I have numbness in left side due to a stroke but never what you are
> describing. Hope somebody else can help! Meanwhile you are in my thoughts
> and prayers, as is everybody else in our group!
> 18's,
> Susan Z.
>
> Susan F. Zimmerman
> "All who humble themselves before the Lord shall be given every blessing,
> and shall have wonderful peace." Ps.37:11
> --
> On Wednesday, September 27, 2017 'Jeanie' via CMLHope <
> cmlhope@googlegroups.com> wrote:
> Hi all
> I've been having anew side effect from something and was wondering if
> anyone else has it too. I wake up with my right hand hurting real bad-being
> numb and especially painful in pinkie finger. Now the whole hand hurts. Any
> ideas?
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -
>
> You received this message because you are subscribed to the Google Groups
> "CMLHope" group.
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>
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Re: [CMLHope] This was posted on our Yahoo site - WE ALL NEED TO READ THE ARTICLE!!!!!

[sherri swanson]

Hi Jeanie,

I too take water pills daily. Wish I could say they help, but I'm sure in
some way they do or I wouldn't be taking them.  I had talked to the
doctor about vein stripping but because of my counts he said absolutely
not. I can't even have dental work done without blood tests to see what my
counts are. But it is okay. Like my mother use to say everyday is a new
day.

I don't mind the tkis anymore after all these years. I've grown accustom to
all the side effects and all the other stuff. I was lost when they took me
off of the Gleevec. Felt like I was missing something. Crazy I know.

Hope you're feeling well.

L'chaim,

Sherri

On Thu, Nov 10, 2016 at 6:26 PM, 'Jeanie' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Hi Sherri
> My sister has terrible leg edema and she doesn't have CML.   She had her
> vein stripped and it has helped.  She takes water pill daily. I'm like you
> can't quit the tkis.  Blessings.
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> On Nov 9, 2016, at 3:01 AM, sherri swanson <swanson.sherri...@gmail.com>
> wrote:
>
> I  heard about this and when I was having some edema, my oncologist took
> me off my Gleevec as all of my doctors were sure that was the reason for my
> leg edema. I was off the Gleevec for 6 months and in that time my counts
> started going up. Slowly at first and then by the 6th month very quickly.
> My oncologist advised me that I will not be able to stop the Gleevec as it
> took me so long to get my count down when I first started it 14 years ago.
>
> So today I am back on my original dosage of 600mg of  Gleevec once a day
> and the edema has never been figured out and my legs still get to 24 inches
> around on any given day. But the good news, my counts are back within
> range. I'll take it.
>
> Hope everyone is doing well.
>
> L'Chaim
>
> Sherri
>
> On Mon, Nov 7, 2016 at 2:50 PM, 'Jeanie' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
>> Good to hear from you and I know what you mean. I get tired of it all too
>> but I've been a CML warrior almost 13 years and live by faith and pills.
>> I'm on my fourth tki now and I feel it's my last try.   I can't go off
>> because my platelets and wbc go sky high when I do.   Just get your rest
>> and eat healthy, get some exercise and get lots of love.  Hang in there
>> warrior.   ♥️♥️
>> Marty give us an uplift today.
>>
>> My Motto:
>> Faith and Pills
>> With Love
>> 18's
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/2015
>> Doctor Balducci Moffitt Cancer Center
>>
>> On Nov 6, 2016, at 12:42 AM, Richard H <rbhuffm...@gmail.com> wrote:
>>
>> Ryan Romero
>> Today at 12:11 PM
>>
>>-
>>-
>>
>> Hi everyone!!!
>>
>> I hope you all are doing well and continuing the fight!
>>
>> I wanted to share with you all a fantastic front page article in CURE
>> Magazine and also ask you if anyone has tried or had success with the LAST
>> Trial. I know some of you have asked your oncologists about this in the
>> past but never say any updates.
>>
>> For those that don't know what this trial is; after 3-4 years of pcrU on
>> TKIs (your chemo- gleevec for me), they are pulling people off gradually.
>> Reports show 50% remain pcrU !!!
>>
>> Today is a bad day for me. I'm tried of the side effects of treatment and
>> overall just tired. Needing some inspiration I picked up my CURE Magaizine
>> and noticed that CML was on the front page. Here's a link below.
>>
>> http://www.curetoday.com/publications/cure/2016/hematology-
>> 2-2016/targeted-power-improving-prognoses-for-patien
>> ts-with-chronic-myeloid-leukemia.
>>
>>
>> Ryan "chemo-sabi"
>> dx-10.27.2009
>> Interferon-10/09-12/09
>> Gleevec-400mg 1xd-12/09-02-11
>> BCR-ABL- undetectable 2/2011
>> 02/2011-Today- 400mg gleevec
>>
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>
>> You received this message because you are subscribed to the Google Groups
>> "CMLHope" group.
>> To post to this group, send email to CMLHope@googlegroups.com
>> To unsubscribe from this group, send email to
>> cmlhope-unsubscr...@googlegroups.com
>> For more options, visit this group at http://groups.goo

Re: [CMLHope] This was posted on our Yahoo site - WE ALL NEED TO READ THE ARTICLE!!!!!

[sherri swanson]

I  heard about this and when I was having some edema, my oncologist took me
off my Gleevec as all of my doctors were sure that was the reason for my
leg edema. I was off the Gleevec for 6 months and in that time my counts
started going up. Slowly at first and then by the 6th month very quickly.
My oncologist advised me that I will not be able to stop the Gleevec as it
took me so long to get my count down when I first started it 14 years ago.

So today I am back on my original dosage of 600mg of  Gleevec once a day
and the edema has never been figured out and my legs still get to 24 inches
around on any given day. But the good news, my counts are back within
range. I'll take it.

Hope everyone is doing well.

L'Chaim

Sherri

On Mon, Nov 7, 2016 at 2:50 PM, 'Jeanie' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Good to hear from you and I know what you mean. I get tired of it all too
> but I've been a CML warrior almost 13 years and live by faith and pills.
> I'm on my fourth tki now and I feel it's my last try.   I can't go off
> because my platelets and wbc go sky high when I do.   Just get your rest
> and eat healthy, get some exercise and get lots of love.  Hang in there
> warrior.   ♥️♥️
> Marty give us an uplift today.
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> On Nov 6, 2016, at 12:42 AM, Richard H  wrote:
>
> Ryan Romero
> Today at 12:11 PM
>
>-
>-
>
> Hi everyone!!!
>
> I hope you all are doing well and continuing the fight!
>
> I wanted to share with you all a fantastic front page article in CURE
> Magazine and also ask you if anyone has tried or had success with the LAST
> Trial. I know some of you have asked your oncologists about this in the
> past but never say any updates.
>
> For those that don't know what this trial is; after 3-4 years of pcrU on
> TKIs (your chemo- gleevec for me), they are pulling people off gradually.
> Reports show 50% remain pcrU !!!
>
> Today is a bad day for me. I'm tried of the side effects of treatment and
> overall just tired. Needing some inspiration I picked up my CURE Magaizine
> and noticed that CML was on the front page. Here's a link below.
>
> http://www.curetoday.com/publications/cure/2016/
> hematology-2-2016/targeted-power-improving-prognoses-for-
> patients-with-chronic-myeloid-leukemia.
>
>
> Ryan "chemo-sabi"
> dx-10.27.2009
> Interferon-10/09-12/09
> Gleevec-400mg 1xd-12/09-02-11
> BCR-ABL- undetectable 2/2011
> 02/2011-Today- 400mg gleevec
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 updates in 1 topic

[sherri swanson]

I too have had terrible muscle cramps on Gleevec. I have also had every
side effect that Gleevec lists in its product sheet. I've been on this
medication for 14 years now and can not change do to other health issues.
At this point all of the side effects just become part of my everyday life
as I've had them for so long. They are awful, but they keep me humble.

L'chaim

Sherri

On Mon, Oct 17, 2016 at 5:28 PM, Marty Gartenberg  wrote:

> I forgot to mention that you have to download this You will see a little
> icon to the right of open with. There are three of four icons and just
> slide your mose over them until you see download then click on it.
>
> On Mon, Oct 17, 2016 at 6:17 PM, Marty Gartenberg 
> wrote:
>
>> Hi,
>> Sorry you went through so much. However take a good look at yourself it
>> really shows you and me and a whole lot of other people that are fighting
>> their battles.
>>
>> It's called a butterfly's lesson. If you like it then be sure to pass it
>> along.
>>
>> 18's,
>>
>> Marty
>>
>> On Mon, Oct 17, 2016 at 5:20 PM, 'Jeanie' via CMLHope <
>> cmlhope@googlegroups.com> wrote:
>>
>>> Yes I had terrible cramps on Gleevec.  Even had trigger finger. Had to
>>> get up in the middle if night to walk out leg cramps. I too was put on
>>> Sprycel.   And yes I would look in mirror and not recognize myself.  Just
>>> keep on fighting warriors.  Blessings
>>>
>>> My Motto:
>>> Faith and Pills
>>> With Love
>>> 18's
>>> Dx 1/2004 CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna 9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib 1/2015
>>> Doctor Balducci Moffitt Cancer Center
>>>
>>> On Sep 30, 2016, at 4:58 PM, lrc lrc  wrote:
>>>
>>> Gleevec has a big history of muscle cramps, especially in the hands and
>>> the legs.   Gleevec also has side affects that include skin that is thin,
>>> white rings around the eyes, water retention around the eyes to name just a
>>> few.   I moved from Gleevec to Sprycel years ago and all the Gleevec issues
>>> disappeared.  It was a wonderful change.  I suggest you review it with your
>>> oncologist.  I am under care of the University of Michigan Cancer Center,
>>> Dr. Talpaz.
>>>
>>> On Fri, Sep 30, 2016 at 12:42 PM, NICK WOODS 
>>> wrote:
>>>
 We're happy to hear you're on the mend, Marty.
 It's been good to read other persons updates in their lives of CML and
 family changes, etc.  Sending sympathy to those whose family members have
 died within the past few months.  It's been so tough on each CMLer as we
 age or our family members are diagnosed with other types of cancers.

 Nick's got a Zauve's O Club number, but it's been a while since we've
 posted it.  Does anyone have a list?

 Wondered if any other persons with CML on Gleevec are experiencing
 multiple muscle cramps?
 Or have large muscle wasting?
 Thanks, Elizabeth Woods Nick's wife


 On Friday, September 30, 2016 5:18 AM, "cmlhope@googlegroups.com" <
 cmlhope@googlegroups.com> wrote:


 cmlhope@googlegroups.com
 
  Google
 Groups
 
 
 Topic digest
 View all topics
 

- Angie, your card

 
- 2 Updates

 Angie, your card
 
 ANGELYN ESDERS : Sep 30 12:20AM

 You are most welcome.I fractured my 9th vertebra a month ago. I have
 had to give up almost everything I do. I understand pain.May we BOTH be
 dancing on tabletops by this time next year!Angie

 From: Marty Gartenberg 
 To: cmlhope@googlegroups.com
 Sent: Thursday, September 29, 2016 12:05 AM
 Subject: [CMLHope] Angie, your card

 Hi Angie, you were so thoughtful to send me a get well card, and I
 wanted to thank you for your kindness.
 18's,
 Marty--
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Re: [CMLHope] All zero club members

[sherri swanson]

Hi Marty,

I'm so glad to see that you are doing a little better my friend. I am not a
big social media person and this coming from a person that has worked in
the IT field for many, many years. Believe it or not there are a lot of us
that are not on facebook, twitter and such.

If anyone should be number one in the Zavie Miller club it is you. It is an
honor to be in the same club as you.  I can't think of a better group of
people to be with.

Sherri


On Wed, Sep 28, 2016 at 8:11 PM, sherri swanson <swanson.sherri...@gmail.com
> wrote:

> Hi Jeanie,
>
> My number is 1023 and I got it on 12/07/2006.
>
> Thanks
>
> On Wed, Sep 28, 2016 at 6:06 PM, Marty Gartenberg <wa2...@gmail.com>
> wrote:
>
>> Hi Sherri,
>>
>> Just to let you know my Zavies zero club number is #1 and face book
>> wasn't even around then, so I also never got on face book.
>>
>> Join our club
>>
>> On Wed, Sep 28, 2016 at 1:44 PM, sherri swanson <
>> swanson.sherri...@gmail.com> wrote:
>>
>>> To bad I'm not on facebook. I have a Zavie number.
>>>
>>> On Wed, Sep 28, 2016 at 8:19 AM, 'Jeanie' via CMLHope <
>>> cmlhope@googlegroups.com> wrote:
>>>
>>>> Thanks. I'll let her know.
>>>>
>>>> My Motto:
>>>> Faith and Pills
>>>> With Love
>>>> 18's
>>>> Dx 1/2004 CML Leukemia
>>>> Started Gleevec 2/2004
>>>> Started Tasigna 9/2009
>>>> Started Sprycel 11/2009
>>>> Started Ponatinib 1/2015
>>>> Doctor Balducci Moffitt Cancer Center
>>>>
>>>> On Sep 28, 2016, at 8:41 AM, ANGELYN ESDERS <esd...@rogers.com> wrote:
>>>>
>>>> I am # 76
>>>>
>>>> --
>>>> *From:* 'Jeanie' via CMLHope <cmlhope@googlegroups.com>
>>>> *To:* 'Jeanie' via CMLHope <cmlhope@googlegroups.com>
>>>> *Sent:* Wednesday, September 28, 2016 7:30 AM
>>>> *Subject:* [CMLHope] All zero club members
>>>>
>>>>
>>>> Hi Florida - Sue Hurt
>>>>
>>>>
>>>>
>>>> If you haven't signed in yet and have your zero zavie club number do so
>>>> as soon as possible.
>>>> facebook page to reconnect to those who were Zavie Millers Zero Club
>>>> Members
>>>> •Zavie - CML Zero Club Members - Where are You ? Facebook Forum.
>>>> I require a little about yourself with CML,
>>>> I also require your Zavie Zero Club number.
>>>> The Forum is vetting expressions of interest of security so that
>>>> conversations can remain private
>>>> This Facebook Forum is a closed site for that reason
>>>> The Forum is only for those who have received a Zero Club Number
>>>>
>>>> https://www.facebook.com/groups/1673390782910601/
>>>>
>>>> Looking forward to hearing from you - Administrator [Sue Hurt]
>>>> My Motto:
>>>> Faith and Pills
>>>> With Love
>>>> 18's
>>>> Dx 1/2004 CML Leukemia
>>>> Started Gleevec 2/2004
>>>> Started Tasigna 9/2009
>>>> Started Sprycel 11/2009
>>>> Started Ponatinib 1/2015
>>>> Doctor Balducci Moffitt Cancer Center
>>>>
>>>> --
>>>> --
>>>> [CMLHope]
>>>> A support group of http://cmlhope.com/
>>>> -
>>>>
>>>> You received this message because you are subscribed to the Google
>>>> Groups "CMLHope" group.
>>>> To post to this group, send email to CMLHope@googlegroups.com
>>>> To unsubscribe from this group, send email to
>>>> cmlhope-unsubscr...@googlegroups.com
>>>> For more options, visit this group at http://groups.google.com/group
>>>> /CMLHope
>>>> ---
>>>> You received this message because you are subscribed to the Google
>>>> Groups "CMLHope" group.
>>>> To unsubscribe from this group and stop receiving emails from it, send
>>>> an email to cmlhope+unsubscr...@googlegroups.com.
>>>> For more options, visit https://groups.google.com/d/optout.
>>>>
>>>> --
>>>> --
>>>> [CMLHope]
>>>> A support group of http://cmlhope.com
>>>> -
>>>>
>>>> You received this message because you are subscribed to the Google
>>>&

Re: [CMLHope] All zero club members

[sherri swanson]

Hi Jeanie,

My number is 1023 and I got it on 12/07/2006.

Thanks

On Wed, Sep 28, 2016 at 6:06 PM, Marty Gartenberg <wa2...@gmail.com> wrote:

> Hi Sherri,
>
> Just to let you know my Zavies zero club number is #1 and face book
> wasn't even around then, so I also never got on face book.
>
> Join our club
>
> On Wed, Sep 28, 2016 at 1:44 PM, sherri swanson <
> swanson.sherri...@gmail.com> wrote:
>
>> To bad I'm not on facebook. I have a Zavie number.
>>
>> On Wed, Sep 28, 2016 at 8:19 AM, 'Jeanie' via CMLHope <
>> cmlhope@googlegroups.com> wrote:
>>
>>> Thanks. I'll let her know.
>>>
>>> My Motto:
>>> Faith and Pills
>>> With Love
>>> 18's
>>> Dx 1/2004 CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna 9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib 1/2015
>>> Doctor Balducci Moffitt Cancer Center
>>>
>>> On Sep 28, 2016, at 8:41 AM, ANGELYN ESDERS <esd...@rogers.com> wrote:
>>>
>>> I am # 76
>>>
>>> --
>>> *From:* 'Jeanie' via CMLHope <cmlhope@googlegroups.com>
>>> *To:* 'Jeanie' via CMLHope <cmlhope@googlegroups.com>
>>> *Sent:* Wednesday, September 28, 2016 7:30 AM
>>> *Subject:* [CMLHope] All zero club members
>>>
>>>
>>> Hi Florida - Sue Hurt
>>>
>>>
>>>
>>> If you haven't signed in yet and have your zero zavie club number do so
>>> as soon as possible.
>>> facebook page to reconnect to those who were Zavie Millers Zero Club
>>> Members
>>> •Zavie - CML Zero Club Members - Where are You ? Facebook Forum.
>>> I require a little about yourself with CML,
>>> I also require your Zavie Zero Club number.
>>> The Forum is vetting expressions of interest of security so that
>>> conversations can remain private
>>> This Facebook Forum is a closed site for that reason
>>> The Forum is only for those who have received a Zero Club Number
>>>
>>> https://www.facebook.com/groups/1673390782910601/
>>>
>>> Looking forward to hearing from you - Administrator [Sue Hurt]
>>> My Motto:
>>> Faith and Pills
>>> With Love
>>> 18's
>>> Dx 1/2004 CML Leukemia
>>> Started Gleevec 2/2004
>>> Started Tasigna 9/2009
>>> Started Sprycel 11/2009
>>> Started Ponatinib 1/2015
>>> Doctor Balducci Moffitt Cancer Center
>>>
>>> --
>>> --
>>> [CMLHope]
>>> A support group of http://cmlhope.com/
>>> -
>>>
>>> You received this message because you are subscribed to the Google
>>> Groups "CMLHope" group.
>>> To post to this group, send email to CMLHope@googlegroups.com
>>> To unsubscribe from this group, send email to
>>> cmlhope-unsubscr...@googlegroups.com
>>> For more options, visit this group at http://groups.google.com/group
>>> /CMLHope
>>> ---
>>> You received this message because you are subscribed to the Google
>>> Groups "CMLHope" group.
>>> To unsubscribe from this group and stop receiving emails from it, send
>>> an email to cmlhope+unsubscr...@googlegroups.com.
>>> For more options, visit https://groups.google.com/d/optout.
>>>
>>> --
>>> --
>>> [CMLHope]
>>> A support group of http://cmlhope.com
>>> -
>>>
>>> You received this message because you are subscribed to the Google
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>>> To post to this group, send email to CMLHope@googlegroups.com
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>>>
>>> You received this message because you are subscribed to the Google
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Re: [CMLHope] All zero club members

[sherri swanson]

To bad I'm not on facebook. I have a Zavie number.

On Wed, Sep 28, 2016 at 8:19 AM, 'Jeanie' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Thanks. I'll let her know.
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> On Sep 28, 2016, at 8:41 AM, ANGELYN ESDERS  wrote:
>
> I am # 76
>
> --
> *From:* 'Jeanie' via CMLHope 
> *To:* 'Jeanie' via CMLHope 
> *Sent:* Wednesday, September 28, 2016 7:30 AM
> *Subject:* [CMLHope] All zero club members
>
>
> Hi Florida - Sue Hurt
>
>
>
> If you haven't signed in yet and have your zero zavie club number do so as
> soon as possible.
> facebook page to reconnect to those who were Zavie Millers Zero Club
> Members
> •Zavie - CML Zero Club Members - Where are You ? Facebook Forum.
> I require a little about yourself with CML,
> I also require your Zavie Zero Club number.
> The Forum is vetting expressions of interest of security so that
> conversations can remain private
> This Facebook Forum is a closed site for that reason
> The Forum is only for those who have received a Zero Club Number
>
> https://www.facebook.com/groups/1673390782910601/
>
> Looking forward to hearing from you - Administrator [Sue Hurt]
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com/
> -
>
> You received this message because you are subscribed to the Google Groups
> "CMLHope" group.
> To post to this group, send email to CMLHope@googlegroups.com
> To unsubscribe from this group, send email to CMLHope-unsubscribe@
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> group/CMLHope
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Re: [CMLHope] Re: Medicare and presc drugs cost

[sherri swanson]

Hi Penny,

I have Part and I am on Gleevec. When I was looking for my carrier, I
listed all my drugs and looked at the plans that gave me the best rate and
the best price for the Gleevec. I wound up with a specialty pharm for the
Gleevec and Walgreen's for everything else.  The prices at the specialty
pharm were much cheaper than going to Walgreen's or CVS. I do not have an
advantage plan it is strictly part D.

Hope that helps.

Sherri

On Wed, Sep 14, 2016 at 10:32 PM, Richard H  wrote:

> Penny, anyone with a major illness including CML must look for insurance
> that does provide part D prescription service.  You will find most
> companies offer different levels of coverage.  Of course that changes your
> monthly rate.  When checking these plans have a complete list of
> medications with you and have the insurance person review all of them.
> Good luck on finding something you can handle in your retirement.
>
> Richard H.
>
>
>
> On Wednesday, September 14, 2016 at 10:04:52 AM UTC-5, Penny wrote:
>>
>> Hi,
>>
>> I am getting close to retiring and checking out Medicare coverage for
>> sprycel.
>> Is anyone in the group on Medicare ?
>>
>> I must be missing something cause I can't afford these prices!
>> I am sure someone has been through this beforeplease help
>>
>> Thanks
>> Penny
>> Cml 2002
>>
>> --
> --
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Re: [CMLHope] Just checking in

[sherri swanson]

MARTY

It is so good to see your words. I'm sorry you're hurt and pray that you
are better soon. Understand that it is a struggle to type us a message,
just say hi to let us know you are OK and we won't worry. Please feel
better soon as we all miss you and want you back when you are able.

18's

Sherri

On Sat, Sep 10, 2016 at 11:02 PM, Richard H  wrote:

> Great to see your post.  Positive thoughts for you and prayers still going
> your way.
> I understand your struggle, just say hi on occasion and my concerns about
> you will ease.
>
> 18's
>
> Richard H.
>
>
>
> --
> --
> [CMLHope]
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>
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Re: [CMLHope] Re: About Marty

[sherri swanson]

I miss Millie too. She was such a sweetie.

Prayers to Marty and to everyone in the group.

Sherri

On Fri, Sep 9, 2016 at 8:00 AM, 'Jeanie' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Remember when we didn't hear from Millie for a while?  Marty was the one
> who got in touch her son and gave us the news.  He also sent flowers I
> believe.  She had liver failure and had been in Tasigna for a long time.
> Bless her heart!! I still miss her like crazy.  She had a lot of pain.
> Blessings to group and let's all day a prayer for Marty.
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> On Sep 8, 2016, at 1:22 PM, sherri swanson <swanson.sherri...@gmail.com>
> wrote:
>
> Thank you so much for the update on Marty. I'm glad to know he is home and
> will reconnect when he is able. Let us know if there is an address that we
> can send cards and good wishes.
>
> Sherri
>
> On Thu, Sep 8, 2016 at 11:16 AM, Myvety2k via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
>> Thank you so much for your comment on Derek, and to the rest of the
>> group.  Still hard to believe he's gone.
>>
>> greenie
>>
>> In a message dated 9/8/2016 12:11:21 P.M. Eastern Daylight Time,
>> cmlhope@googlegroups.com writes:
>>
>> Ditto  from me. Thank you so much for checking on Marty. Glad to know his
>> story..and that his amazing spirit is still intact to inspire all of us.
>> HOPe everyoneis doing OK. Greenie , thinking of you and your wife as you
>> live through the loss of your son. While there are no words adequate to
>> express my sadness for you, I want you to know I and all of us here,
>> continue to think of you each day. Take good care.
>>
>> Love, Beth
>>
>>
>> -Original Message-
>> From: Myvety2k via CMLHope <cmlhope@googlegroups.com>
>> To: cmlhope <cmlhope@googlegroups.com>
>> Sent: Thu, Sep 8, 2016 9:38 am
>> Subject: Re: [CMLHope] Re: About Marty
>>
>> Thank you so much for checking out how Marty is doing for all of us.
>>
>> greenie
>>
>> In a message dated 9/8/2016 6:35:42 A.M. Eastern Daylight Time,
>> cmlhope@googlegroups.com writes:
>>
>>
>>
>> > On Sep 7, 2016, at 6:04 PM, LadyRx <lad...@aol.com> wrote:
>> >
>> > Because everyone has been worried about our suddenly absent friend,
>> Marty, I decided to look him up and call. Our dear friend is recovering
>> from a fall in which he broke his neck in three places and broke some bones
>> in his shoulder. Due to complications from surgery, he developed pneumonia
>> and was in the hospital. After recuperating from that and being in a rehab
>> facility, he is at home now. He seems to have a very positive attitude.
>> What an amazingly kind, warm, intelligent man he is! He sends warmest
>> regards to all and looks forward to reconnecting with everyone when he's
>> able to do so.
>> > 18's for our friend, Marty!
>>
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com
>> -
>>
>> You received this message because you are subscribed to the Google Groups
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Re: [CMLHope] Re: About Marty

[sherri swanson]

Thank you so much for the update on Marty. I'm glad to know he is home and
will reconnect when he is able. Let us know if there is an address that we
can send cards and good wishes.

Sherri

On Thu, Sep 8, 2016 at 11:16 AM, Myvety2k via CMLHope <
cmlhope@googlegroups.com> wrote:

> Thank you so much for your comment on Derek, and to the rest of the
> group.  Still hard to believe he's gone.
>
> greenie
>
> In a message dated 9/8/2016 12:11:21 P.M. Eastern Daylight Time,
> cmlhope@googlegroups.com writes:
>
> Ditto  from me. Thank you so much for checking on Marty. Glad to know his
> story..and that his amazing spirit is still intact to inspire all of us.
> HOPe everyoneis doing OK. Greenie , thinking of you and your wife as you
> live through the loss of your son. While there are no words adequate to
> express my sadness for you, I want you to know I and all of us here,
> continue to think of you each day. Take good care.
>
> Love, Beth
>
>
> -Original Message-
> From: Myvety2k via CMLHope 
> To: cmlhope 
> Sent: Thu, Sep 8, 2016 9:38 am
> Subject: Re: [CMLHope] Re: About Marty
>
> Thank you so much for checking out how Marty is doing for all of us.
>
> greenie
>
> In a message dated 9/8/2016 6:35:42 A.M. Eastern Daylight Time,
> cmlhope@googlegroups.com writes:
>
>
>
> > On Sep 7, 2016, at 6:04 PM, LadyRx  wrote:
> >
> > Because everyone has been worried about our suddenly absent friend,
> Marty, I decided to look him up and call. Our dear friend is recovering
> from a fall in which he broke his neck in three places and broke some bones
> in his shoulder. Due to complications from surgery, he developed pneumonia
> and was in the hospital. After recuperating from that and being in a rehab
> facility, he is at home now. He seems to have a very positive attitude.
> What an amazingly kind, warm, intelligent man he is! He sends warmest
> regards to all and looks forward to reconnecting with everyone when he's
> able to do so.
> > 18's for our friend, Marty!
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -
>
> You received this message because you are subscribed to the Google Groups
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> group/CMLHope
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Re: [CMLHope] Haven't gotten any e-mail notifications

[sherri swanson]

All is well here in humid Illinois. I just got another dog so we are trying
to learn each other. He is 8 years old and from a shelter. But he's a good
boy.  Hope everyone is doing well and enjoying the end of summer. We will
be in the 90s for the next few days and then cool down.

Wish we would hear from Marty.

L'chaim
Sherri

On Mon, Sep 5, 2016 at 11:42 PM, 'Marcie Goodman' via CMLHope <
cmlhope@googlegroups.com> wrote:

> I'm here, just not been posting. Haven't seen anything from Marty in quite
> a while. Hope Marty and all of the group is enjoying end of summer and
> doing well.
>
> Marcie
>
> Sent from my iPad
>
> On Sep 6, 2016, at 12:16 AM, 'rszim0...@aol.com' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
> I'm here but on vacay til the 18th. Havent seen any posts either!
>
> 18's,
>
> SusanZ.
>
> Ps. Any word from Marty?
>
>
> Sent from my Sprint phone
>
>
> -- Original message--
>
> *From: *'LadyRx' via CMLHope
>
> *Date: *Mon, Sep 5, 2016 1:06 PM
>
> *To: *cmlhope@googlegroups.com;
>
> *Subject:*[CMLHope] Haven't gotten any e-mail notifications
>
>
> I haven't received any notifications in my e-mail for the past 3 weeks or so. 
> Just checking to see if the group is still active. If so, please leave a 
> comment.Thank you!-- -- [CMLHope]A support group of 
> http://cmlhope.com-You 
> received this message because you are subscribed to the Google Groups 
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Re: [CMLHope] Anyone out there. Testing

[sherri swanson]

Hey Greenie,

Anything is better than snow! Just saying the word is awful. LOL 

On Wed, Jul 13, 2016 at 10:09 AM, Myvety2k via CMLHope <
cmlhope@googlegroups.com> wrote:

> It's going to be in the upper 90's here in Southwest Florida, BUT, still
> better then SNOW...
> greenie
>
> In a message dated 7/13/2016 9:41:55 A.M. Eastern Daylight Time,
> cmlhope@googlegroups.com writes:
>
> 82 right now in Fl. Going up soon. It's a little cloudy here. Been having
> great thunder storms.
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> On Jul 13, 2016, at 12:18 AM, Richard H <rbhuffm...@gmail.com> wrote:
>
> How hot is your skillet.  Most of our Missouri area has a heat index in
> the afternoon above 100 degrees and one day I remember was 114 degrees in
> the shade.  a race a few weekends ago the race track was reading 141
> degrees while they were racing.
>
> The World weather this year is totally UNBELIEVABLE!!!
>
> Richard H.
>
> On Tuesday, July 12, 2016 at 8:30:43 PM UTC-5, Angie wrote:
>>
>> We're roasting in Canada!
>> How hot is it?
>> The chickens are laying hard boiled eggs.
>>
>> --
>> *From:* sherri swanson <swanson@gmail.com>
>> *To:* cml...@googlegroups.com
>> *Sent:* Tuesday, July 12, 2016 8:06 PM
>> *Subject:* Re: [CMLHope] Anyone out there. Testing
>>
>> Hi Jeanie,
>>
>> I'm out here in the heat & humidity trying to stay cool. 
>>
>> Sherri
>>
>> On Tue, Jul 12, 2016 at 11:03 AM, 'Jeanie' via CMLHope <
>> cml...@googlegroups.com> wrote:
>>
>>
>>
>> My Motto:
>> Faith and Pills
>> With Love
>> 18's
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/2015
>> Doctor Balducci Moffitt Cancer Center
>>
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com/
>> -
>>
>> You received this message because you are subscribed to the Google Groups
>> "CMLHope" group.
>> To post to this group, send email to cml...@googlegroups.com
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>>
>>
>> --
>> --
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>> A support group of http://cmlhope.com/
>> -
>>
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> A support group of http://cmlhope.com
> -
>
> You received th

Re: [CMLHope] New BCR-ABL test in

[sherri swanson]

Richard,

That's great news! I just had my BCR/ABL on Monday so I don't know the
results yet. Hope they are as good as yours.

Sherri

On Tue, Jul 12, 2016 at 11:03 PM, Richard H  wrote:

> I have another Good Report foe this 6 month test.  My count is ..1% or
> less.  Great News for me.  I am still t checking weekly for low hemoglobin
> and still have times that I use Procrit to build it back up.
>
>
> 18's
>
>
> Richard H.
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -
>
> You received this message because you are subscribed to the Google Groups
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Re: [CMLHope] Anyone out there. Testing

[sherri swanson]

I don't don't mind the heat but this humidity has got to go.  The good news
about the chickens laying hard boiled eggs, you don't have to cook and
cause any heat in your house. LOL 
To make matters worse my A/C went out on Tuesday morning. The good news, I
live in a community were they will come and fix it for me. WOOHOO! I have
A/C again.

Stay cool everyone.

On Tue, Jul 12, 2016 at 11:18 PM, Richard H <rbhuffm...@gmail.com> wrote:

> How hot is your skillet.  Most of our Missouri area has a heat index in
> the afternoon above 100 degrees and one day I remember was 114 degrees in
> the shade.  a race a few weekends ago the race track was reading 141
> degrees while they were racing.
>
> The World weather this year is totally UNBELIEVABLE!!!
>
> Richard H.
>
> On Tuesday, July 12, 2016 at 8:30:43 PM UTC-5, Angie wrote:
>>
>> We're roasting in Canada!
>> How hot is it?
>> The chickens are laying hard boiled eggs.
>>
>> --
>> *From:* sherri swanson <swanson@gmail.com>
>> *To:* cml...@googlegroups.com
>> *Sent:* Tuesday, July 12, 2016 8:06 PM
>> *Subject:* Re: [CMLHope] Anyone out there. Testing
>>
>> Hi Jeanie,
>>
>> I'm out here in the heat & humidity trying to stay cool. 
>>
>> Sherri
>>
>> On Tue, Jul 12, 2016 at 11:03 AM, 'Jeanie' via CMLHope <
>> cml...@googlegroups.com> wrote:
>>
>>
>>
>> My Motto:
>> Faith and Pills
>> With Love
>> 18's
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/2015
>> Doctor Balducci Moffitt Cancer Center
>>
>> --
>> --
>> [CMLHope]
>> A support group of http://cmlhope.com/
>> -
>>
>> You received this message because you are subscribed to the Google Groups
>> "CMLHope" group.
>> To post to this group, send email to cml...@googlegroups.com
>> To unsubscribe from this group, send email to
>> cmlhope-u...@googlegroups.com
>> For more options, visit this group at
>> http://groups.google.com/group/CMLHope
>> ---
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>>
>>
>> --
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>>
>> --
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Re: [CMLHope] Anyone out there. Testing

[sherri swanson]

Hi Jeanie,

I'm out here in the heat & humidity trying to stay cool. 

Sherri

On Tue, Jul 12, 2016 at 11:03 AM, 'Jeanie' via CMLHope <
cmlhope@googlegroups.com> wrote:

>
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com
> -
>
> You received this message because you are subscribed to the Google Groups
> "CMLHope" group.
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Re: [CMLHope] About John Hopkins Cancer Update

[sherri swanson]

Greenie,

I'm so sorry to hear about the loss of your son. I'm glad to hear that
Grace is back home and resting. I will keep you in my thoughts and prayers.

Sherri in Illinois

On Fri, Jun 17, 2016 at 3:42 PM, bkbarney via CMLHope <
cmlhope@googlegroups.com> wrote:

> Dear Greenie,
>
> So glad to hear that Joyce is home. Greenie, as I am in Chicago..if I can
> help you in any way..please let me know. Thinking of you and your family
> sending warmth and prayers to you. Beth
>
>
> -Original Message-
> From: 'Jeanie' via CMLHope 
> To: cmlhope 
> Sent: Thu, Jun 16, 2016 5:13 am
> Subject: Re: [CMLHope] About John Hopkins Cancer Update
>
> Glad she's home Greenie and sorry she can't go with you.   Tell her I said
> to take care of herself and everything else will take care of itself.
> I know personally what I can do and what I can't and even though I want to
> do somethings I understand I can't.
> Grief will take its tole on you so take care of yourself too.
> Love and blessing to you in time of sorrow.
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> On Jun 16, 2016, at 4:52 AM, Myvety2k via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
> Thank you Joyce and to everyone else.  Grace came home yesterday afternoon
> and she is O. K. but needs to rest.  Doctor told her she's not to go  to
> Chicago with me.
>
> greenie
>
> In a message dated 6/16/2016 2:41:46 A.M. Eastern Daylight Time,
> joy...@htc.net writes:
>
> Greenie,
> So sorry to hear about your son.  I hope Grace is back at home and
> recovering.  It is very hard to lose a child.  You are in my thoughts and
> prayers.
> Joyce in IL
>
>
>
> On Jun 14, 2016, at 12:05 PM, 'Jeanie' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
> Thanks Marty,
> My hubby died in 1998 in his sleep right beside me. We had been married
> almost 43 years and dated for a year and half before we got married. He had
> his first heart attack when he was 52. It was a very hard loss.
> But life goes on and we must live it the very best we can.
> Thanks. ❤️
>
> My Motto:
> Faith and Pills
> With Love
> 18's
> Dx 1/2004 CML Leukemia
> Started Gleevec 2/2004
> Started Tasigna 9/2009
> Started Sprycel 11/2009
> Started Ponatinib 1/2015
> Doctor Balducci Moffitt Cancer Center
>
> On Jun 14, 2016, at 12:25 PM, Marty Gartenberg  wrote:
>
> But Jeanie, you now can see what my father taught me and just look right
> into your heart and mind... By the way Jeannie, your heart and your mind
> are very powerful tools.
>
> Sorry about the loss of your "Hubby"
>
> 18's
>
> Marty
>
> On Tue, Jun 14, 2016 at 11:26 AM, 'Jeanie' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
>> So true Marty. When I lost my Hubbie I could feel him everywhere.  I even
>> saw him standing at the refrigerator door where I had seen him so many
>> times.  Love will sustain you and yours.  ❤️
>>
>> My Motto:
>> Faith and Pills
>> With Love
>> 18's
>> Dx 1/2004 CML Leukemia
>> Started Gleevec 2/2004
>> Started Tasigna 9/2009
>> Started Sprycel 11/2009
>> Started Ponatinib 1/2015
>> Doctor Balducci Moffitt Cancer Center
>>
>> On Jun 14, 2016, at 10:59 AM, Marty Gartenberg  wrote:
>>
>> I am so sorry to hear about the tragic loss of your son. Please try to
>> take care of Grace. It seems that life has it's twists and turns. but Grace
>> will get through with this, just so much aggravation and grief.
>>
>> My deepest condolences to you, Grace, and your daughter-in-law and the
>> rest of your family and friends
>>
>> I still remain sending out my 18's and there is a good reason. My father
>> once taught me that when a loved one passes on that the loved person may no
>> longer be  physically there, but that person will always be there in your
>> hearts and minds. Please take comfort in that.
>>
>> My prayers are with you.
>>
>> 18's
>>
>> Marty
>>
>> On Mon, Jun 13, 2016 at 10:52 PM, Myvety2k via CMLHope <
>> cmlhope@googlegroups.com> wrote:
>>
>>> With heavy heart I received word from my daughter-in-law this afternoon
>>> that my 31 year son Derek passed away from a heart attack, he was at the
>>> gym working out. Grace and I are lost for words and I had to take Grace to
>>> the hosp. from chest pains put she will be alright but will have to stay
>>> their for a few days before they let her come home.
>>>
>>> greenie
>>>
>>> In a message dated 6/13/2016 6:07:27 P.M. Eastern Daylight Time,
>>> cmlhope@googlegroups.com writes:
>>>
>>> Our food today is full of junk. You would have to grow everything
>>> yourself and use no fertilizer or pesticides.  You can't even buy gum or
>>> toothpaste without artificial sweetener.  I was a health nut before I got
>>> cancer.  Go figure.  I think moderation is the key and variety.  Try to get
>>> 

Re: [CMLHope] ZAVIE ZERO CLUB NUMBER

[sherri swanson]

Hi Marty,

I too was in Zavie's Zero Club. My number is 1023. Do we know what happen
to the numbers after what is on this list? Are we thinking about keeping
the list going? If so, I would be glad to help. I've got time and great
computer skills. Let me know if I can help in any way.

Sherri

On Fri, Apr 1, 2016 at 4:38 AM, Marty Gartenberg  wrote:

> Hi Emile, actually the list is included in your message to me. I hope that
> everyone that is interested in the list, it goes from # 1 That's me to #826.
>
> I also have it converted to text, however be fore warned it is very long,
> but one thing that this list proves, just look at how many people have
> survived and this list is not even complete. You getting my meaning of what
> 18's is really all about?
>
> I want to thank you Emile for all of your work, can all of you imagine
> what Zavie went through, because of how much his dedication went?
>
> 18's
>
> Marty
>
>  ZERO CLUB MEMBERS
> No. Name Surname City St Comment
> 1 Marty Gartenberg Staten Island NY BMT from sister. I now live in Florida
> 2 Linda Bartlett Cody WY Gleevec
> 3 Jeanelle Street Nederland TX
> 4 Vinny Carrasco
> 5 Rob Gebauer Roseville CA
> 6 Suzan McNamara Montreal QU Petition originator.
> 7 Cynthia Duty Arlington VA Mother is Kim
> 8 Dorothy Emery Denver NC Helped with album
> 9 Jill Jones   Husband is Richard
> 10 Ellen Rubino New York NY Mother has CML Email doesn't work anymore
> 11 Bob Andrews   Relapsed. Was in accellerated.
> 12 Margie Bovee Saline MI Sees Dr. Schiffer @ Karmanis in Detroit
> 13 Jane Graham Seattle WA
> 14 Marilyn Phillips Buckhannon WV Son Tim writes.
> 15 Chris Posadas   Laurie?
> 16 Wayne Becken Niagra Falls ON Trial in Detroit. Diag. Mar 1989
> 23 Fran Evertsbusch Anchorage Alaska INF, now on Gleevec, name is Maiuri
> 33 Angelo Arizzo   Goes to MD Anderson
> 34 Scott Read Kaysville UT
> 44 Cliff Layman Raleigh (from Schenectady NY) NC see Dr. Shea and
> Dr.Powderly in Chapel Hill.
> 45 Alayna Leppke  OK
> 47 Joyce Ward Pickerington OH Early chronic, 0 at 3 mos. Heart attach,
> 1/20 in jun03
> 49 Dave Schulz Detroit MI Had a self transplant.
> 50 Giora Scharf Natanya ISR 0 by Dr. Hochhaus
> 52 Bob Aylesworth St. Petersberg FL Wife Dawn
> 54 Bob Stewart Granger IN Wife Pat
> 58 Judy Orem Portland OR
> 59 Pete Pabon Palm Harbour FL Moved from Bayside NY
> 60 Ken Allen
> 61 Riza Yilmabasar
> 62 Lorraine Rollo
> 64 Dave B.   INF only
> 65 Jennifer Gangloff
> 66 Nancy Belcher Alameda CA Liver toxicity
> 67 Thea Rosen   Dr. M. Shurafa, Henry Ford
> 69 Kristin Olson Lieberman San Marino CA
> 70 Diane Wiley Coronado CA mom hDaughter is Laura Civilikasas cml
> 71 David Cranmer Shelburne VT BMT relapse, wife is Allison
> 72 Abe Weintraub   father in law Barry
> 73 Fposades Fish   BMT
> 74 Dianne Ness Mpls MN Husband Paul, INF
> 75 Richard Rockefeller Falmouth ME Dr., was on peg inf, MSKCC
> 76 Angela Esders Brantford ON
> 77 Dana Huddleston
> 78 Richard Schenk Harpers Ferry WV
> 79 David Greenberg Hobart IN
> 80 Sylvia Guenther Toronto ON
> 81 Harmony Jaursch
> 82 Susan Geller Chicago IL INF, daughter Jodi has CML
> 83 Sandra Craine London UK lives in UK
> 84 Victoria Bartling
> 85 Marajou Janse The Hague Netherlands
> 86 Steven Flack San Diego CA
> 87 Mithun Kamath New Orleans LA 15yr, dad is Burde
> 88 Linda Ginn   age 44
> 89 Phylecia Wilson
> 90 Peter Capel Walton on Themes Surry From Elizabeth Rees - Hammersmith
> 91 Steve Harvey
> 92 Georgia Coats Dearborn MI age 28
> 93 Ruth Marcon Allentown PA Dr. Shuster, NY Presbyterian
> 94 Tracy van Houwling Leiden NL
> 95 Jack Plummer Aventura FL From ACOR, Dr. Talpaz
> 96 Bruce Weinstock Richfield  MN Had a BMT. Relapsed. Gleevec
> 97 Terry Lowell Littleton CO
> 98 Doug Tan Kuala Lumpur Malaysia
> 99 John Rowe Oxon Hill MD Wife Marguaritte, after 12 mos on Gleevec
> 100 John Calderwood Vancouver BC Still waiting. 1% left.
> 101 Susan Carrow Buffalo NY
> 102 Zavie Miller Ottawa ON
> 103 Amy Fischer Boca Raton FL
> 104 Unlucky for Japanese
> 105 Ken Ito  Japan
> 106 Darlene  Shepherdsville KY
> 107 Charlie Jensen Fort Colins CO Wife is Vicky. Relapsed Mar02
> 108 Ladonna Lopossa Winlock WA 207 E Walnut #22 Winlock WA 98596 FISH 0
> 360-785-0907
> 109 Steve Robinson Longview WA Wife Jenifer, met at LTN
> 110 Syad Ansari
> 111 Lisa Martinez Tampa FL
> 112 Gale Woliver (Bacon) Dallas TX
> 113 Genie Boutchia Plymouth MA  Dana Farber, Dr. De'Angelo
> 114 Chris Duce San Diego CA His mom is Paty
> 115 Bonnie Liebergot Chevy Chase MD harris.liebergot.nist.gov
> 116 Sal
> 117 Anna Powers
> 118 Doris Kentucky  KY
> 119 Paula Sapinski   dxd 5/4/2001
> 120 Joe Stark Grove OK Wife Mary, going off G  May 2004
> 121 = Mulone Astoria NY Frances dx 5/22/2, Gleevec 5/25/01-10/2/01
> bma-cyto 0% in 3 mos.
> 122 Beth Petrich   From European Site
> 123 Shelley Orenstein Boca Raton FL
> 124 Max Hoefler  Germany
> 125 Keith Sharrock
> 126 Sydna
> 127 Richard Wilday
> 128 Caroline MacDonald   Husband, Steve
> 129 Keith 

Re: [CMLHope] Hey, what happened to everyone?

[sherri swanson]

Hi Angie,

Thanks for the good wishes.
I haven't heard of anyone with the edema issues I have that are on Gleevec.
I am on a rather high dose at 600mg, and have been since I started. In my
case the doctors blame Gleevec for everything. I had a toe nail that was
falling off from fungus and he told me it was the Gleevec. Sometimes it is
really comical the things I hear that Gleevec causes.

Stay well,

Sherri




On Wed, Mar 2, 2016 at 3:20 AM, sherri swanson <swanson.sherri...@gmail.com>
wrote:

> Hi Marty,
>
> My doctor put me on Furosemide 20mg & potassium as I have low potassium to
> begin with, and at 20mg it did nothing. SO of course, he increased it to
> 40mg and still nothing. He switched me to a different drug Spironalactone,
> generic for Aldactone and still no trips to the bathroom and the swelling
> did not abate. My legs are just stubborn. So that is when all the testing
> started and current I am not on any diuretic as none of them have produced
> a result. Strange huh? Leave it to me to be difficult. But with all the
> other medical issues I have some not so common, the doctors are doing a
> bunch of tests with the hopes of find the culprit.
>
> I have to tell ya, I would welcome a run for the bathroom about now. LOL
> Anything to get rid of this excess water.
>
> As always, your input is most welcome.
>
> Cheers,
>
> Sherri
>
>
> On Tue, Mar 1, 2016 at 10:12 PM, 'judy' via CMLHope <
> cmlhope@googlegroups.com> wrote:
>
>> Hello  This is Judy I forgot my password s I ave to wait till some one
>> writes  all is good t this end we got about a foot of snow and its
>> beautiful  Just love it.  Have been off Gleevec for a few years and
>> stillgoing  Good  Keeping up with blood tests because of other things buT
>> all is Good with the counts.   Take care and if you want some snow come and
>> get it  HAha   JUDY
>>
>>
>> On Monday, February 29, 2016 10:00 AM, Marty Gartenberg <wa2...@gmail.com>
>> wrote:
>>
>>
>> Why the silence? I miss everyone.
>>
>> 18's,
>>
>> Marty
>> --
>> --
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>> A support group of http://cmlhope.com/
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Re: [CMLHope] Hey, what happened to everyone?

[sherri swanson]

Hi Marty,

My doctor put me on Furosemide 20mg & potassium as I have low potassium to
begin with, and at 20mg it did nothing. SO of course, he increased it to
40mg and still nothing. He switched me to a different drug Spironalactone,
generic for Aldactone and still no trips to the bathroom and the swelling
did not abate. My legs are just stubborn. So that is when all the testing
started and current I am not on any diuretic as none of them have produced
a result. Strange huh? Leave it to me to be difficult. But with all the
other medical issues I have some not so common, the doctors are doing a
bunch of tests with the hopes of find the culprit.

I have to tell ya, I would welcome a run for the bathroom about now. LOL
Anything to get rid of this excess water.

As always, your input is most welcome.

Cheers,

Sherri


On Tue, Mar 1, 2016 at 10:12 PM, 'judy' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Hello  This is Judy I forgot my password s I ave to wait till some one
> writes  all is good t this end we got about a foot of snow and its
> beautiful  Just love it.  Have been off Gleevec for a few years and
> stillgoing  Good  Keeping up with blood tests because of other things buT
> all is Good with the counts.   Take care and if you want some snow come and
> get it  HAha   JUDY
>
>
> On Monday, February 29, 2016 10:00 AM, Marty Gartenberg 
> wrote:
>
>
> Why the silence? I miss everyone.
>
> 18's,
>
> Marty
> --
> --
> [CMLHope]
> A support group of http://cmlhope.com/
> -
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Re: [CMLHope] Re: Hey, what happened to everyone?

[sherri swanson]

Hi Everyone.

Sorry to have been so quite but I've been dealing with a lot of crazy
health issues. I've been on Gleevec for 13 years and have had every side
effect it can throw at me and have dealt with it. At the beginning of 2015
I began having some edema in my legs and I told my GP about and he said it
was my Gleevec. I said okay I talk to my oncologist. I had had swelling
before with the Gleevec but never in my legs and never like this. SO off to
the oncologist and he said I should talk to my kidney doctor as I have
Stage 3 kidney  disease. Off to the kidney doctor I went and he said it was
the Gleevec. I said I didn't think it was and told him about all the side
effects I had in the past. Well, that was the end of all the conversations.
I would see the doctors and every time they would tell me how swollen my
legs and feet were but each would point to the other and then to the
Gleevec.

Finally in December 2015, I could no longer stand the pain and my calves
were now 24 inches around so I called my GP and got in to see him right
away. I was sent to a cardiologist and he told me the swelling was not
caused by medications. After a bunch of very expensive tests, he told me it
was the Gleevec and I had to stop it right away. I looked at him like he
was nuts and called my oncologist and told him was said. We agreed that I
would stop the Gleevec for 2 weeks and if the swelling did not improve I
would go back on it.

After 2 weeks the swelling did not improve I actually got worse and the
oncologist would not put me back on the Gleevec as he believed that it was
now the the medication masking something that was causing the issue. He
sent me to Northwestern to see Dr. Altman.

After meeting with her and having a tremendous amount of blood drawn and
making appointments with other specialists at Northwestern including a
cardiac oncologist, I feel that I am on the road to getting this problem
with my legs resolved. I am waiting to hear from Dr. Altman to find out
what my BCR-ABL was as well as my WBC, as my white count was climbing since
I've been off the Gleevec. I've seen so many doctors, I feel like I've met
every doctor in the state of Illinois. That is way to many. I'm hopeful
that I'll be able to start my Gleevec today. As for the pain and swelling
in my legs, I'll just live with it until we find out what the heck it is
and how to treat it. As of today, I have been off Gleevec for 2 months and
the pain and swelling has not changed. The pain in my legs is like an
electric shock and they feel like they are on fire. And I do mean fire.
Like someone has poured gasoline on them and lit a match and tossed it on
my legs. It's awful. That I know of Gleevec does not have those side
effects, and Dr. Altman did think so either.

Has anyone here that has taken Gleevec had any side effects like that?

I hope everyone has a good week and stays well.

Strength doesn't come from what you can do. It comes from overcoming the
things you thought couldn't.

L'chaim,

Sherri

On Tue, Mar 1, 2016 at 7:16 AM, Norm  wrote:

> I am still alive and kicking but one of my kickers is giving me fits. I
> think it is plantar fasciitis.
>
> I haven't posted in awhile and miss Millie may she rest in peace.
> Jeanie is my cruise mentor and my wife and I along with a few other
> friends just got back a couple of weeks ago from a 7 day cruise to Jamaica,
> Cayman, and Cozumel.
>
> We were busy with one of my cousin staying here quite often  while he was
> being treated for stage 4 Melanoma, he passed and is walking with Jesus
> now. Way too young and such a very good person.
>
> My beloved dachshund, Hans, turned 12  yesterday. About a month ago we
> were given the devastating news that he has lymphoma. I never knew it would
> be so difficult to have to deal with the knowledge that one day, much
> sooner than expected, I would have to ease his way to a comfortable ending.
> I dread this as he was my buddy and comfort while I was recovering from my
> relapse of CML.
> He is being spoiled even more than ever now and will be until that time
> comes. Millie would understand.
>
> April 1st will mark 13 years since my diagnosis and the start of Gleevec.
> As some know, I relapsed and Gleevec no longer worked.
> I was fortunate enough to get in the clinical trial for AMN107 during the
> phase 1 study.
> As you can tell, it worked but not before I entered blast and was one very
> sick puppy. I believe that one night the angel of death came for me and for
> some reason let me stay.
> All I know is Dr Kantarjian tells me to thank God and I do.
>
> My son has finished his tour of duty with the USMC and has been discharged
> as a Sargent with the Achievement medal. We are extremely proud of our son,
> and our daughter who is still teaching photography to high schoolers.
>
> I have been training my replacements at work so I can eventually retire. I
> am ready but they are not.lol..
>
> My macular degeneration is stable and I have 

Re: [CMLHope] Heart valve replacement and TKIs

[sherri swanson]

Hi Perry,

I've been on Gleevec for 13 years and I just started having trouble with my
heart. I am scheduled next week for some tests to rule out some things and
hopefully help me with the issues that I am having. I do not have a
diagnosis yet, so I can't say if it will be an aortic replacement.

I wish you the best with your surgery and please keep us updated.

Sherri

On Wed, Jan 6, 2016 at 6:36 PM, 'Marcie Goodman' via CMLHope <
cmlhope@googlegroups.com> wrote:

> Perry,
>
> I have not but just want to wish you well. Please keep us updated because
> we look out for one another.
>
> Marcie
>
> Sent from my iPhone
>
> > On Jan 6, 2016, at 7:05 PM, Perry Israel  wrote:
> >
> > I've been lurking on the list for quite some time, and thought I would
> seek some advice. I've been on Gleevec for almost 9 years and am doing fine
> with my numbers--tried a break, numbers started to rise, went back on, fell
> back to PCRU, and thinking about trying another break in the near future.
> >
> > In the meantime, I've learned that I'm going to have the have an aortic
> valve replacement. Has anybody else on the list on a TKI had a valve
> replacement?  If so, how did it go?
> >
> > Thanks.
> >
> > Perry
> >
> > Sent from my iPad
> >
> > --
> > --
> > [CMLHope]
> > A support group of http://cmlhope.com
> > -
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Re: [CMLHope] New Insurance

[sherri swanson]

Hi Suzie,

Back in June of this year, I need to get my Gleevec refilled. When I went
to pick it up I was told my total would be $ 18,987.00 for one month. I
take 600mg a day. I almost fell on the floor right there at the counter. It
just so happens, my husbands insurance decided they were changing companies
and they were no longer going to cover retirees. The company never sent out
anything telling him of the switch and I have to say that total was a
shock. The pharmacist was nice enough to hold the medication until we could
get it sorted out which took a week.

Come to find out the insurance company shut off the insurance to soon as my
husband's company hadn't had a chance to sent out the new information and
cards. I did find out that for one month of 400mg of Gleevec my current
refill price is $10,301.00 and the 100mg is $5,830.00, and that is as of
September. Of course I don't pay that, but that was what was listed on the
invoice to the insurance company. Thank goodness for the insurance.

Glad you got your insurance situation straighten out.

L'chaim

Sherri

On Fri, Oct 30, 2015 at 8:30 PM, Marty Gartenberg  wrote:

> Hi Suzie,
>
> Before I start let me run a few numbers by you. First 90.43 today's
> closing in the stock market for Novartis. Another number 91.9200 that's
> what it was worth in September. Finally another number 20. That is what is
> was when Novartis started manufacturing STI-571. Maybe you haven't heard of
> it then but that is now the drug called Gleevec. And there is a story
> behind it having to do with a lot of money.
>
> Now for some history:
>
> Some of you may remember my friend Zavie. Most of us "old timers" probably
> do. When Dr. Druker was having some trials and one of the people was Zavie
> Miller who lived up in Canada.
>
> What the problem was that Novartis was basically a company that would
> produce pharmaceuticals for veterinary needs. So when STI-571 was just
> about finished with STI-571/Gleevec  Novartis was urged to start production
> on it but the money needed was simply not there as it would probably be
> needed.
>
> There were probably a few CML sites scattered around so Zavie and I got
> the idea of getting in touch with a few "higher up's in Novartis which we
> finally did. We then spoke with them and we then asked for any monetary
> support. It was a long story but people did start buying it for $20 a
> share, which was more then what was expected, and that was more then
> expected. And that's exactly what happened.
>
> Now I would like to explain something:  When I first starting with my
> computer I decided to support the CML groups and started asking around for
> any one looking to buy any stock. Most of then did and so did I. In fact so
> did a lot of other people followed around and then the baby was born.
>
> So let's take a look at the stock market. Gleevec, sold for $20 a share
> and todays
>
> On Fri, Oct 30, 2015 at 7:16 PM, Suzieq  wrote:
>
>> *Hello my fellow Survivors:  *
>>
>> *Well, my hubby and I had a great big surprise when he went to refill his
>> prescription for blood pressure medicine a couple of weeks ago. He found
>> out that we had been dropped by our previous insurance as of September
>> 30th.  Wasn't that sweet..no notice what so ever! Thank goodness that I
>> have a few bottles of Gleevec on hand as it came time to reorder.  Anyhoo,
>>  he put us in for COBRA and got us started as of last Friday.  When we sold
>> our business last spring,  the new owners were to keep our insurance going
>> for at least one year after the sale,  but that did not happen.  You cannot
>> trust people today to do what they tell you they will do.  At least we
>> found out in the time period to get the other started.  Now,  we are
>> covered for the next 18 months.  *
>>
>> * Here is what I wanted to tell you that I learned...my husband had
>> me call to order my Gleevec as there was a chance that I was still
>> covered.  The pharmacy tech told me that "no, I wasn't until Dec. 1st" (not
>> true now, have a new card)  anyway, I just asked her what the cost of
>> 100mgs. of Gleevec for one month would cost if one had to pay cash money.
>> She checked and came back on and said "$3000".  I was stunned.I told
>> her that I sure thought that the price would have gone down,  instead it is
>> like it went up more since I first started taking it.  The last price I had
>> while I was still doing 400mgs. and that was around 4 and 1/2 years ago, it
>> was getting really close to that $6000 mark for 1 month.  The reason I knew
>> the cost,  the stupid pharmacy I ordered thru the mail from included a
>> receipt of the cost.  I always thought it odd for them to do that since I
>> paid a co-pay of 25$ back then,  but oh well, it was interesting to watch
>> the price rise each month.   I kept thinking that Novartis wouldn't have
>> dibs on the Patent any longer by now and the price would drop and Generic
>> brand 

Re: [CMLHope] Oct BCR-ABL

[sherri swanson]

Richard,

So sorry to heard about your wife's fall. Sending her healing wishes. With
regards to your CML, stable is a wonderful thing. May you stay a long time.

L'chaim
Sherri

On Wed, Aug 26, 2015 at 6:28 PM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote:

 Richard,

 I am so sorry to hear about your wife's fall. It sounds so miserable and
 painful...Hopefully with time, she will make a full recovery..I am glad she
 has you. As for your news...stable is good! And the BCR is
 unchangedThis is cause for celebration!!!

 Stay close, and have a good fall.

 Warm regards, Beth (18's)


 -Original Message-
 From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Wed, Aug 26, 2015 5:13 pm
 Subject: Re: [CMLHope] Oct BCR-ABL

 Hi Richard and sorry to hear about your wife but glad you are doing good.
 Hang in there!!!

 My Motto: Faith and Pills
 Jeanie \uD83D\uDC1F\uD83D\uDC1F18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Aug 26, 2015, at 12:25 AM, Richard H  rbhuffm...@gmail.com wrote:

 I met with my ONC today.  The good news is that My BCR-ABL was the same as
 .6% and matches my test 3 months ago.  My HMG is starting to stabilize with
 the medications I am taking.  We discussed when I should think about
 requesting to take a Procrit shot so we are on the same page when I read my
 CBC every 2 weeks.

 I am on safe ground for now.  My wife took a fall Monday morning and today
 they put a cylinder  and 1 pin in her upper right thigh.  She also
 fractured her collar bone close to her cervical bone and possibly cracked a
 rib .  So she is having a tough go for a while.  She broke her left thigh
 in the same area 7 years ago.

 18s
 Richard H.
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Re: [CMLHope] Thanks

[sherri swanson]

Joyce,

I know what you mean about looking ahead. Better to be prepared. I'm glad
you are happy with Dr. Talpaz. I too am happy with my oncologist. I've been
with him for for 14 years. I sure hope he doesn't plan on retiring any time
soon. LOL Although, the practice has some great Doctors in and at one time
or another, I've seen just about all of them.  Hope you're doing well.

Sherri

On Sun, Aug 23, 2015 at 9:48 PM, Joyce Mesnarich joy...@htc.net wrote:

 Sherri,
 Thank you for the information about the Chicago CML specialist.  But it is
 just about as far for us to fly to Chicago as to Ann Arbor.  We are very
 happy with Dr Talpaz..just looking ahead to the time when either our
 health or our finances prevent us from the travel.
   Joyce in IL


 On Aug 22, 2015, at 8:21 AM, sherri swanson wrote:

 Hi Joyce,

 I just saw that you go to Ann Arbor to see Dr. Talpaz for your husband and
 live in Southern Illinois. Have you checked out the CML specialist that
 replaced Dr. Tallman at Northwestern in Chicago? I have not seen her, but
 my oncologist has hinted that he will send me to her should I need to to
 see her. I use to see Dr. Tallman every 6 months until he left. I could get
 her name for you if it is an avenue you would like to explore. Let me know.

 Sherri in IL

 On Fri, Aug 21, 2015 at 10:35 PM, Joyce Mesnarich joy...@htc.net wrote:

 Susieq
 So sorry to hear about your experiences on FB.  I agree:  hope is good,
 but not fasle hope.  I certainly hope you don't leave us here on CML Hope.
 You are a valued member/contributor.  What part of MO are you from?  We
 live in Southern IL and are also enjoying the fall-like weather.

 Do you have a CML oncologist in the St Louis area?  My husband is
 traveling all the way to Ann Arbor, MI, to see Dr Talpaz.  He is worth the
 trip, but as airfare gets higher and higher it is getting too expensive.
 But at the present time he really needs a CML specialist.  So I guess we
 will just suck it up and pay the bills.
   Joyce in IL


 On Aug 21, 2015, at 12:16 PM, Suzieq wrote:

 Hello to all...just wanted to say that it's good to hear from y'all
 from time to time.  I decided to leave the two Facebook groups a couple of
 days ago.  I hated to do it because I thought it was good for the new ones
 being dx'ed to have the help of those of us who have been around awhile. :)
  Then I got upset with some who were posting stuff about being in
 remission after 2 years and being able to come off the TKI's.  Another
 one said that after being dx'ed, their doctor told them aww, don't worry,
 you will be taking this drug for about a year and then you'll be cured.
 ?  I have come unglued a few times over these people saying stuff like
 this or always saying I'm in remission...I asked this one lady where
 she got her information (the 2 year thing)  she posted some link to the
 England study.  I wanted to tell her that according to my doctor, over half
 of those people who came off Gleevec had their CML return  some
 accelerated right to Blast stage. (actually, I think I did tell her that,
 but they didn't listen to me)  But, I could see she was in an argumentative
 mood and I don't argue.  I told the one person whose doctor told her that
 about taking this pill and being cured in a year's time that she should
 find herself/himself a new doctor,  one who is a CML specialist or at least
 a good Onc./Hem.  Some of us did try to tell this group that there is just
 not enough evidence yet to prove that there is a cure. The drugs haven't
 been around long enough.  There was one lady who has been taking Gleevec
 for 15 years and has been undetectable for almost that long whose doctor
 told her she could now quit taking her medicine and they would see how she
 did. The lady said she felt like she was flying without her kite. :)  I
 could understand that.  Okay,  I am done ranting nowjust wanted y'all
 to know what some were being told.  I believe it's good to give people
 hope,  but not a dangerous false hope.  Some of us older ones tried to tell
 them that not everybody's body was the same,  some responded differently to
 the drugs. We tried to tell them about how these drugs haven't been around
 long enough to gather enough evidence.  But, you might as well be talking
 to the wind.

 Greenie,  it is always good to hear from a fellow Missourian, :).  We are
 experiencing fall like temperatures in the middle of August. Can you
 believe it?  70's and mid-80's!  Don't know how long it will hold out, but
 I'm sure enjoying it.  And, we've had so much more rain this year that
 normal. Everything is still nice and green around here.

 Jeannie:  I noticed that you and I were dx'ed exactly the same month and
 year,  stared Gleevec the same time.  I'm sorry that it didn't work for
 you,  thankful for all these newer TKI's coming out that you had something
 new to try.  I know you've fought many more battles than I have had to deal
 with.  Thankful each

Re: [CMLHope] Thanks

[sherri swanson]

Hi Joyce,

I just saw that you go to Ann Arbor to see Dr. Talpaz for your husband and
live in Southern Illinois. Have you checked out the CML specialist that
replaced Dr. Tallman at Northwestern in Chicago? I have not seen her, but
my oncologist has hinted that he will send me to her should I need to to
see her. I use to see Dr. Tallman every 6 months until he left. I could get
her name for you if it is an avenue you would like to explore. Let me know.

Sherri in IL

On Fri, Aug 21, 2015 at 10:35 PM, Joyce Mesnarich joy...@htc.net wrote:

 Susieq
 So sorry to hear about your experiences on FB.  I agree:  hope is good,
 but not fasle hope.  I certainly hope you don't leave us here on CML Hope.
 You are a valued member/contributor.  What part of MO are you from?  We
 live in Southern IL and are also enjoying the fall-like weather.

 Do you have a CML oncologist in the St Louis area?  My husband is
 traveling all the way to Ann Arbor, MI, to see Dr Talpaz.  He is worth the
 trip, but as airfare gets higher and higher it is getting too expensive.
 But at the present time he really needs a CML specialist.  So I guess we
 will just suck it up and pay the bills.
   Joyce in IL


 On Aug 21, 2015, at 12:16 PM, Suzieq wrote:

 Hello to all...just wanted to say that it's good to hear from y'all
 from time to time.  I decided to leave the two Facebook groups a couple of
 days ago.  I hated to do it because I thought it was good for the new ones
 being dx'ed to have the help of those of us who have been around awhile. :)
  Then I got upset with some who were posting stuff about being in
 remission after 2 years and being able to come off the TKI's.  Another
 one said that after being dx'ed, their doctor told them aww, don't worry,
 you will be taking this drug for about a year and then you'll be cured.
 ?  I have come unglued a few times over these people saying stuff like
 this or always saying I'm in remission...I asked this one lady where
 she got her information (the 2 year thing)  she posted some link to the
 England study.  I wanted to tell her that according to my doctor, over half
 of those people who came off Gleevec had their CML return  some
 accelerated right to Blast stage. (actually, I think I did tell her that,
 but they didn't listen to me)  But, I could see she was in an argumentative
 mood and I don't argue.  I told the one person whose doctor told her that
 about taking this pill and being cured in a year's time that she should
 find herself/himself a new doctor,  one who is a CML specialist or at least
 a good Onc./Hem.  Some of us did try to tell this group that there is just
 not enough evidence yet to prove that there is a cure. The drugs haven't
 been around long enough.  There was one lady who has been taking Gleevec
 for 15 years and has been undetectable for almost that long whose doctor
 told her she could now quit taking her medicine and they would see how she
 did. The lady said she felt like she was flying without her kite. :)  I
 could understand that.  Okay,  I am done ranting nowjust wanted y'all
 to know what some were being told.  I believe it's good to give people
 hope,  but not a dangerous false hope.  Some of us older ones tried to tell
 them that not everybody's body was the same,  some responded differently to
 the drugs. We tried to tell them about how these drugs haven't been around
 long enough to gather enough evidence.  But, you might as well be talking
 to the wind.

 Greenie,  it is always good to hear from a fellow Missourian, :).  We are
 experiencing fall like temperatures in the middle of August. Can you
 believe it?  70's and mid-80's!  Don't know how long it will hold out, but
 I'm sure enjoying it.  And, we've had so much more rain this year that
 normal. Everything is still nice and green around here.

 Jeannie:  I noticed that you and I were dx'ed exactly the same month and
 year,  stared Gleevec the same time.  I'm sorry that it didn't work for
 you,  thankful for all these newer TKI's coming out that you had something
 new to try.  I know you've fought many more battles than I have had to deal
 with.  Thankful each time I see you posting here.  God bless you

 Marty,  thank you for letting me know that Skip is still with us.  I was a
 little afraid when not hearing from him in so long.

 Keep Looking Up,

 Suzieq

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Re: [CMLHope] Re: 12 years old boy with CML

[sherri swanson]

You are correct about learning from our parents. I learned from my
grandparents. They were from Europe and when they first came here spoke no
English at all. It was not until my mother, their first born went to school
did they learn how to speak English. When I was at my grandparents home I
was not allowed to speak English. It was always Hebrew. I learned all my
traditions from my grandmother as well as cooking.

I too mean cure all those that are afflicted with illness and disease. I
would love to see every disease wiped out and every person live their pain
 drug free. I've been praying for this for a very long time and not
because I am ill or because I had family members who were very sick. I use
to work in the medical profession and I saw a lot of pain and suffering
that I could do nothing about. When it comes to myself, I am the type of
person that does not wallow in my pain. I do not find any comfort in that,
and it does not help. I find that if I find something to do to help others
in some way, then I have been productive. And besides, weather I'm doing
something or not, the pain will be there, so I might as well be doing
something.

I am glad that you are the way you are Marty. It keeps you going. And the
ability to speak seven languages is an asset. And to get five of those
languages back within a day after your stoke is amazing. Was English more
of a second language in your home?  That could be why English took so long
to come back after your stroke. What part of Europe did your parents come
from? What other languages do you speak? I can also speak German and some
Russian and I learned Spanish in high school. Of course when I was in
medicine we had to know Latin. Oh my, did I just date myself? LOL However,
I don't remember very much of that.

How are you recovering from your stoke? Are you doing PT or anything like
that?

L'chaim



On Sun, Jul 26, 2015 at 3:52 PM, Marty Gartenberg wa2...@gmail.com wrote:

 He will heal us, oh God, and we need to heal up and save us, and we will
 be saved, one we praise is you. To bring complete healing for all our
 diseases, Ho Chi Minh Mausoleum of God, you are loyal to us merciful King.
 God bless you, Sir, cure the patients of Israel

 When I mean cure the patients of Israel I mean cure every person that
 is afflicted with any disease through the world.

 As you must know I have been through some difficult time in the last
 several months and even more in the last 26 years ever since my bone marrow
 transplant but I still refuse to complain because I find that it does't
 help me. I have a much better way of dealing with things, which I have been
 doing for a long time. Trying to help people including my self as well as
 others.

 Mt Kidney transplant, my prostate operation, and my stroke, but I seem to
 get through these.
 Right after my stroke, at first I wasn't able to speak to well but as time
 went in only a couple weeks
 I got most of my speech back.

 A funny happened within a day or so I was able to get at least five of my
 languages back with full understanding I was even able to get the speech
 back but not my English until a month ago. Still working on that but almost
 completely

 When I was a young child my parents were from Europe and they spoke
 several languages
 So we learned from them.

 18's and L'chaim

 Marty


 On Sun, Jul 26, 2015 at 11:56 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hi Marty,

 As you can guess, it is Sunday.
 You are correct when you say that Gleevec is a terrible taste but I don't
 have to much of a choice. I did stop it for awhile under my doctors advice
 and my numbers went threw the roof so he put me right back on the
 medication. When he first put me on the Gleevec, it took me 2.5 years just
 to get my numbers in the somewhat normal range. My CML is very stubborn.

 Thanks for the tip on Biotene. I have tried that and now I'm something
 else as that didn't work. Like I said above stubborn. Everything I have is
 that way. They like me for some reason and don't want to leave me. LOL !
  The new stuff I take is called Xylimelts and it has a mild mint
 flavor that I love and they are all natural. They help increase saliva
 which is something I need as I tend to get blacked salivary glands. ANd boy
 is that ever a painful experience.

 I must say your  Cyslosporine description does not want to make me run
 out and try it any time soon. LOL I'm telling you, these drugs we take,
 something they are almost as bad as the disease we have.

 Thank you for Sabbath wish and the get well wish. I have something for
 you as well.


 לרפא אותנו, הו אלוהים, ואנחנו צריכים להירפא; להציל אותנו, ואנחנו יישמרו, לאחד
 אנו משבחים הוא אתה. להביא ריפוי מלא לכל המחלות שלנו, להו אלוהים, אתה
 נאמן לנו ומרפא רחום ומלך. ברוך אתה, אדוני, מרפא את החולים של ישראל.
 L'chaim

 On Thu, Jul 23, 2015 at 1:17 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Yes me too.   So sorry. My husband had diabetes and suffered

Re: [CMLHope] Re: 12 years old boy with CML

[sherri swanson]

 tasteful.

 L'chaim

 On Thu, Jul 23, 2015 at 3:25 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hi Marty,

 I Hope this message fines you well. Sorry to be so late in responding to
 you, but I do not use the computer on the Sabbath and I haven't been
 feeling well.

 So to answer your question, Gleevec has a very bitter astringent taste,
 and when you swallow it, the liquid burns all the way down. I would imagine
 it would be like drinking Drano only less caustic. No matter what you I do
 I can not get rid of the taste. I've brushed my teeth, used mouthwash and
 that tasted is still there for hours. On top of that, because I'm taking it
 in a liquid, I have mouth sores that never heal and each time I take my
 medication, I reopen the sores. It's also hard on the enamel of my teeth or
 at least that is what my dentist tells me. I would much rather swallow the
 pill but due to my paralyzed stomach, I can no longer do that.

 So what did Cyclosporine taste like? I can't image that it was very
 tasteful.

 L'chaim

 On Fri, Jul 17, 2015 at 2:34 PM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Hi Sherri,

 I am just curious I have tasted some awful things in my life, including
 liquid Cyclosporine with was the absolutely worth thing I have ever tasted
 in my life, but since i have never been on Gleevec can you tell me what
 does it taste?

 On Fri, Jul 17, 2015 at 2:32 PM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 No problem. It is strange to tell someone that you don't eat solid food
 and still take Gleevec. Or whenever I say that my stomach is paralyzed I
 get the funniest looks.  But I just explain what kind of illness I
 have and people are so surprised. But I will say one thing, that Gleevec is
 just awful tasting. But I've been doing for so long now that I've grown
 accustom to the taste. Now that is sad. 

 Hope everyone has a great weekend. Try and stay cool. It is going to be
 in the 90's here in the Chicago area and very humid too.

 L'chaim

 Sherri

 On Fri, Jul 17, 2015 at 12:33 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi Sherri and all.
 I guess we have to realize that we are so unique and different.  We
 have to do what we have to do to survive.
 When I first went on Gleevec it wasn't working. So we crush the pills
 and everything hoping it would work. I didn't know at the time  that we
 were not supposed to crush the pills.
 I do know that some people can't swallow pills.  I'm so sorry to hear
 about your stomach problems.  I hope you get better.
 Thanks so much for your story.

 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Jul 16, 2015, at 2:43 PM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hi everyone,

 While it is true we are not to take PPI's and we are to take our
 Gleevec with a meal, I happen to be the exception to that rule. I've been
 on Gleevec since 2002. I have not taken my Gleevec with any solid food in 
 6
 years. I have a paralyzed stomach and I can no longer digest solid food. 
 SO
 I must have only liquids. The only way I can take my Gleevec is dissolved
 in 3 ounces of apple juice. NOW, I do not recommend that everyone go out
 and do this as it is very hoard to tolerate and I am very sick when I take
 my Gleevec this way. But it is the only way I can get it in and it was
 doctor recommended. And, let me tell you, it tastes awful!

 As for the PPI's, I've been on those for as long as I've been on the
 Gleevec. However, do to my kidney disease, my nephrologist has taken me 
 off
 of the PPI and my stomach is very angry with me. More so than before.

 Now, I do not recommend that you go out an take the PPI's and Gleevec
 at the same time. I'm a special case and I was able to tolerate. Jeanie is
 correct when she says you should follow the instructions from the packet.
 I'm just relaying my experience.

 L'chaim

 Sherri

 On Thu, Jul 16, 2015 at 1:02 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hello all.
 When I was in the hospital in 2009 after Gleevec failed I kept asking
 my onc at the time to start me on Sprycel.  He wouldn't at first but
 finally a nurse convinced him to do it.  He was giving me 600 mgs Gleevec
 plus other drugs.  My platelets and WBC were very high and not coming 
 down
 even after blood cleansing.
 He came in my room and gave me a prescription for Sprycel.  The
 hospital I was in couldn't get the Sprycel so my son had it filled at
 Walgreens.  I was reading the Sprycel information and it said no proton
 pump inhibitors.  I found out that due to my side pain they were giving 
 me
 a proton pump inhibitor twice a day. No wonder the meds weren't working!
 I refused to take the inhibitor again.
 The Sprycel put me into remission in just a few months.  So be your
 own doctor at times and read the info on your drugs

Re: [CMLHope] Re: 12 years old boy with CML

[sherri swanson]

Hi Marty,

I Hope this message fines you well. Sorry to be so late in responding to
you, but I do not use the computer on the Sabbath and I haven't been
feeling well.

So to answer your question, Gleevec has a very bitter astringent taste, and
when you swallow it, the liquid burns all the way down. I would imagine it
would be like drinking Drano only less caustic. No matter what you I do I
can not get rid of the taste. I've brushed my teeth, used mouthwash and
that tasted is still there for hours. On top of that, because I'm taking it
in a liquid, I have mouth sores that never heal and each time I take my
medication, I reopen the sores. It's also hard on the enamel of my teeth or
at least that is what my dentist tells me. I would much rather swallow the
pill but due to my paralyzed stomach, I can no longer do that.

So what did Cyclosporine taste like? I can't image that it was very
tasteful.

L'chaim

On Fri, Jul 17, 2015 at 2:34 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi Sherri,

 I am just curious I have tasted some awful things in my life, including
 liquid Cyclosporine with was the absolutely worth thing I have ever tasted
 in my life, but since i have never been on Gleevec can you tell me what
 does it taste?

 On Fri, Jul 17, 2015 at 2:32 PM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 No problem. It is strange to tell someone that you don't eat solid food
 and still take Gleevec. Or whenever I say that my stomach is paralyzed I
 get the funniest looks.  But I just explain what kind of illness I
 have and people are so surprised. But I will say one thing, that Gleevec is
 just awful tasting. But I've been doing for so long now that I've grown
 accustom to the taste. Now that is sad. 

 Hope everyone has a great weekend. Try and stay cool. It is going to be
 in the 90's here in the Chicago area and very humid too.

 L'chaim

 Sherri

 On Fri, Jul 17, 2015 at 12:33 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi Sherri and all.
 I guess we have to realize that we are so unique and different.  We have
 to do what we have to do to survive.
 When I first went on Gleevec it wasn't working. So we crush the pills
 and everything hoping it would work. I didn't know at the time  that we
 were not supposed to crush the pills.
 I do know that some people can't swallow pills.  I'm so sorry to hear
 about your stomach problems.  I hope you get better.
 Thanks so much for your story.

 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Jul 16, 2015, at 2:43 PM, sherri swanson swanson.sherri...@gmail.com
 wrote:

 Hi everyone,

 While it is true we are not to take PPI's and we are to take our Gleevec
 with a meal, I happen to be the exception to that rule. I've been on
 Gleevec since 2002. I have not taken my Gleevec with any solid food in 6
 years. I have a paralyzed stomach and I can no longer digest solid food. SO
 I must have only liquids. The only way I can take my Gleevec is dissolved
 in 3 ounces of apple juice. NOW, I do not recommend that everyone go out
 and do this as it is very hoard to tolerate and I am very sick when I take
 my Gleevec this way. But it is the only way I can get it in and it was
 doctor recommended. And, let me tell you, it tastes awful!

 As for the PPI's, I've been on those for as long as I've been on the
 Gleevec. However, do to my kidney disease, my nephrologist has taken me off
 of the PPI and my stomach is very angry with me. More so than before.

 Now, I do not recommend that you go out an take the PPI's and Gleevec at
 the same time. I'm a special case and I was able to tolerate. Jeanie is
 correct when she says you should follow the instructions from the packet.
 I'm just relaying my experience.

 L'chaim

 Sherri

 On Thu, Jul 16, 2015 at 1:02 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hello all.
 When I was in the hospital in 2009 after Gleevec failed I kept asking
 my onc at the time to start me on Sprycel.  He wouldn't at first but
 finally a nurse convinced him to do it.  He was giving me 600 mgs Gleevec
 plus other drugs.  My platelets and WBC were very high and not coming down
 even after blood cleansing.
 He came in my room and gave me a prescription for Sprycel.  The
 hospital I was in couldn't get the Sprycel so my son had it filled at
 Walgreens.  I was reading the Sprycel information and it said no proton
 pump inhibitors.  I found out that due to my side pain they were giving me
 a proton pump inhibitor twice a day. No wonder the meds weren't working!
 I refused to take the inhibitor again.
 The Sprycel put me into remission in just a few months.  So be your own
 doctor at times and read the info on your drugs.

 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started

Re: [CMLHope] Re: 12 years old boy with CML

[sherri swanson]

No problem. It is strange to tell someone that you don't eat solid food and
still take Gleevec. Or whenever I say that my stomach is paralyzed I get
the funniest looks.  But I just explain what kind of illness I have and
people are so surprised. But I will say one thing, that Gleevec is just
awful tasting. But I've been doing for so long now that I've grown accustom
to the taste. Now that is sad. 

Hope everyone has a great weekend. Try and stay cool. It is going to be in
the 90's here in the Chicago area and very humid too.

L'chaim

Sherri

On Fri, Jul 17, 2015 at 12:33 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Sherri and all.
 I guess we have to realize that we are so unique and different.  We have
 to do what we have to do to survive.
 When I first went on Gleevec it wasn't working. So we crush the pills and
 everything hoping it would work. I didn't know at the time  that we were
 not supposed to crush the pills.
 I do know that some people can't swallow pills.  I'm so sorry to hear
 about your stomach problems.  I hope you get better.
 Thanks so much for your story.

 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Jul 16, 2015, at 2:43 PM, sherri swanson swanson.sherri...@gmail.com
 wrote:

 Hi everyone,

 While it is true we are not to take PPI's and we are to take our Gleevec
 with a meal, I happen to be the exception to that rule. I've been on
 Gleevec since 2002. I have not taken my Gleevec with any solid food in 6
 years. I have a paralyzed stomach and I can no longer digest solid food. SO
 I must have only liquids. The only way I can take my Gleevec is dissolved
 in 3 ounces of apple juice. NOW, I do not recommend that everyone go out
 and do this as it is very hoard to tolerate and I am very sick when I take
 my Gleevec this way. But it is the only way I can get it in and it was
 doctor recommended. And, let me tell you, it tastes awful!

 As for the PPI's, I've been on those for as long as I've been on the
 Gleevec. However, do to my kidney disease, my nephrologist has taken me off
 of the PPI and my stomach is very angry with me. More so than before.

 Now, I do not recommend that you go out an take the PPI's and Gleevec at
 the same time. I'm a special case and I was able to tolerate. Jeanie is
 correct when she says you should follow the instructions from the packet.
 I'm just relaying my experience.

 L'chaim

 Sherri

 On Thu, Jul 16, 2015 at 1:02 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hello all.
 When I was in the hospital in 2009 after Gleevec failed I kept asking my
 onc at the time to start me on Sprycel.  He wouldn't at first but finally a
 nurse convinced him to do it.  He was giving me 600 mgs Gleevec plus other
 drugs.  My platelets and WBC were very high and not coming down even after
 blood cleansing.
 He came in my room and gave me a prescription for Sprycel.  The hospital
 I was in couldn't get the Sprycel so my son had it filled at Walgreens.  I
 was reading the Sprycel information and it said no proton pump inhibitors.
 I found out that due to my side pain they were giving me a proton pump
 inhibitor twice a day. No wonder the meds weren't working!
 I refused to take the inhibitor again.
 The Sprycel put me into remission in just a few months.  So be your own
 doctor at times and read the info on your drugs.

 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Jul 16, 2015, at 6:39 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi we are not supposed to have proton pumps on tkis.  I'm so sorry he is
 sick.   He is supposed to take his gleevec with a large meal. I took mine
 with my breakfast. Read your gleevec info and see the info there.  Has he
 added any new med?
 Keep him on mild food and see a dietician if possible.  Good luck.
 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Jul 15, 2015, at 2:47 PM, kevin.l.willi...@gmail.com 
 kevin.l.willi...@gmail.com wrote:

 I would ask your Oncologist about alternative drugs to Gleevec.

 On Wednesday, July 15, 2015 at 1:00:14 AM UTC-7, Choi wrote:

 Hi, this is Choi.

 My friend's 12 years old son have CML. He got diagnosed when he was 7
 years old and on 200mg Gleevec for 5 years.

 Recently he has been suffering from severe nausea and stomach pain (sign
 of gastritis) for 2 weeks.

 His Doctor gave treatment for gastritis; proton pump inhibitor, PPI. but
 it doesn't work.

 Do you have any advice for relief from withdrawls symptoms?

 Choi.

  --
 --
 [CMLHope

Re: [CMLHope] Re: 12 years old boy with CML

[sherri swanson]

Hi everyone,

While it is true we are not to take PPI's and we are to take our Gleevec
with a meal, I happen to be the exception to that rule. I've been on
Gleevec since 2002. I have not taken my Gleevec with any solid food in 6
years. I have a paralyzed stomach and I can no longer digest solid food. SO
I must have only liquids. The only way I can take my Gleevec is dissolved
in 3 ounces of apple juice. NOW, I do not recommend that everyone go out
and do this as it is very hoard to tolerate and I am very sick when I take
my Gleevec this way. But it is the only way I can get it in and it was
doctor recommended. And, let me tell you, it tastes awful!

As for the PPI's, I've been on those for as long as I've been on the
Gleevec. However, do to my kidney disease, my nephrologist has taken me off
of the PPI and my stomach is very angry with me. More so than before.

Now, I do not recommend that you go out an take the PPI's and Gleevec at
the same time. I'm a special case and I was able to tolerate. Jeanie is
correct when she says you should follow the instructions from the packet.
I'm just relaying my experience.

L'chaim

Sherri

On Thu, Jul 16, 2015 at 1:02 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hello all.
 When I was in the hospital in 2009 after Gleevec failed I kept asking my
 onc at the time to start me on Sprycel.  He wouldn't at first but finally a
 nurse convinced him to do it.  He was giving me 600 mgs Gleevec plus other
 drugs.  My platelets and WBC were very high and not coming down even after
 blood cleansing.
 He came in my room and gave me a prescription for Sprycel.  The hospital I
 was in couldn't get the Sprycel so my son had it filled at Walgreens.  I
 was reading the Sprycel information and it said no proton pump inhibitors.
 I found out that due to my side pain they were giving me a proton pump
 inhibitor twice a day. No wonder the meds weren't working!
 I refused to take the inhibitor again.
 The Sprycel put me into remission in just a few months.  So be your own
 doctor at times and read the info on your drugs.

 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Jul 16, 2015, at 6:39 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hi we are not supposed to have proton pumps on tkis.  I'm so sorry he is
 sick.   He is supposed to take his gleevec with a large meal. I took mine
 with my breakfast. Read your gleevec info and see the info there.  Has he
 added any new med?
 Keep him on mild food and see a dietician if possible.  Good luck.
 My Motto: Faith and Pills
 Jeanie 18,s
 Dx 1/2004. CML Leukemia
 Started Gleevec 2/2004
 Started Tasigna  9/2009
 Started Sprycel 11/2009
 Started Ponatinib January 2015
 Dr Balducci Moffitt Cancer Center

 On Jul 15, 2015, at 2:47 PM, kevin.l.willi...@gmail.com 
 kevin.l.willi...@gmail.com wrote:

 I would ask your Oncologist about alternative drugs to Gleevec.

 On Wednesday, July 15, 2015 at 1:00:14 AM UTC-7, Choi wrote:

 Hi, this is Choi.

 My friend's 12 years old son have CML. He got diagnosed when he was 7
 years old and on 200mg Gleevec for 5 years.

 Recently he has been suffering from severe nausea and stomach pain (sign
 of gastritis) for 2 weeks.

 His Doctor gave treatment for gastritis; proton pump inhibitor, PPI. but
 it doesn't work.

 Do you have any advice for relief from withdrawls symptoms?

 Choi.

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Re: [CMLHope] Platelets

[sherri swanson]

Hi Marty,

I just saw your reply to Susan about having a stroke. When did this happen?
I've been sick and did not have access to PLM so I didn't know you were
ill. I'll say an extra prayer for you. I hope your feeling better.

L'chaim,

Sherri

On Thu, Jul 2, 2015 at 8:47 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi. Susan

 unfortunately i had a stroke. getting better.

 18's

 Marty













 On Mon, Jun 29, 2015 at 2:18 PM, 'Susan Zimmerman' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Pete,
 When I was at Moffitt from 2005 til 2007, I saw Dr. Javier Panilla.  He
 is GREAT!!!

 18'S,
 Susan F. Zimmerman


 -Original Message-
 From: Pete Pabon nyc...@hotmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Mon, Jun 15, 2015 12:36 am
 Subject: RE: [CMLHope] Platelets

   *Jeanie,who do you see at Moffitt?*



  --
 Date: Sun, 14 Jun 2015 20:23:18 -0700
 From: rbhuffm...@gmail.com
 To: cmlhope@googlegroups.com
 Subject: Re: [CMLHope] Platelets

  I do understand Skip.  I have a sister that has been anemic all her
 life, and she is doing fine at 5.  I have been having problems every time I
 get close 7.9.Just again shows how we each find our spot that works for
 us.

  Richard H.

 On Sunday, June 14, 2015 at 8:08:33 AM UTC-5, easyskip_2002 wrote:


 I have had very low platelets and ANC and RBC and plus some others plus
 high Ferritin counts over 7000 most weeks I have critical platelets and
 white counts of 1.2 or up to 2.01  neut 0.20 yet with no meds I have 0.8
 log reduction. I fell fine been doing this for 37 years I tell you this as
 I want all to know Low counts should looked but not to spoil your day
  Zevie was astounded when I send him on of my blood reports with 1.0 white
 88 RBC 0zero platelets  ANC of 0.20
 hooe this helps
  Skip Dx 1977
 Sent from Yahoo Mail on Android
 https://overview.mail.yahoo.com/mobile/?.src=Android
 --
*From*:'Icandoallttc' via CMLHope  cml...@googlegroups.com
 *Date*:Tue, May 19, 2015 at 9:01 AM
 *Subject*:Re: [CMLHope] Platelets

  I also have problems with platelets and WBC.   They go way too high.
 Only on Tasigna did they drop too Lowe.  Go figure.  We are all unique in
 how we respond to the tkis.
  Moffitt tomorrow.  I am hoping for good results.
  5 months on ponatinib.

 Prayers  Blessings Jeanie [image: Fish] [image: Fish]18,s
 Dx 1/2004
  Started Gleevec 2/2004
  Started Tasigna  9/2009
  Started Sprycel 11/2009
  Started Ponatinib January 2015

 On May 17, 2015, at 7:08 AM, Gopalsamy Ragavan  graga...@gmail.com
 wrote:

   I have problems with platelet count. Diagnosed in 2012 Started with
 Gleevec. Now with Sprycel. With Sprycel, platelet counts go down. Started
 with 140mg per day and now taking 50mg per day. One moth of Sprycel
 medication and two months rest for platelet recovery. This is how current
 medication is going on. I take papaya leaf tea everyday to improve
 platelets.

  On Sat, May 16, 2015 at 9:29 AM, ANGELYN ESDERS esd...@rogers.com
 wrote:

   Does anyone have problems maintaining their platelet level?
  Mine fall down to almost ZERO, which is a dangerous place to be. I am
 covered with big purple bruises and petechiae and look like I have been in
 a bar fight. Even a light scratch on my skin brings the blood to the
 surface. It is called Thrombocytopenia. My red cells also plummet and I had
 6 blood transfusions  last week.
  My confidence waivers a little as it seems they don't really know what
 to do about me. I have lots of complications. More specialists on the
 horizon, but every step forward is followed by 3 steps back. I am on
 massive prednisone for the moment.
  Can anyone share  info on this?
  Angie in Canada
  Gleevec pioneer since 2001

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Re: [CMLHope] Today's Doctor visit

[sherri swanson]

Richard,
Good Job![?]
Sherri

On Thu, May 28, 2015 at 9:54 AM, Joyce Mesnarich joy...@htc.net wrote:

 Richard,
 So happy to hear your good news!!
  Joyce in IL



 On May 27, 2015, at 10:44 PM, Richard H wrote:


 I know I am and I'm lovin every minute of it.  Life is so much more fun
 when you are winning.

 Richard H.

 On Wednesday, May 27, 2015 at 8:37:57 AM UTC-5, wa2yyx wrote:

 Richard, I'm not going to be polite so here it is. YOU ARE KICKING *ASS*.
 Yea!!!

 So you now deserve this poem.

 EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
 CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
 YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
 (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.

 WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
 MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING
 INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU
 THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.

 EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
 BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
 SUCCESSFUL OUTCOME...

 FOCUS...

 18's,

 Marty

 On Wed, May 27, 2015 at 12:34 AM, Richard H rbhuf...@gmail.com wrote:

 I received my ABL-BCR results and I had another CBC before we met.  My
 ABL-BCR has decreased form 1.17 to .6.  Great news!!!  The Hemoglobin was
 up from 11 on Friday to 11.8 today.  So with those great results I will now
 go into monitoring mood on a weekly basis until I get my next ABL-BCR in
 Aug.  The ONC was in awe of the results since we reduced the Gleevec to
 300mg and I reminded him that anytime I tried to convince he to do it him
 just wasn't comfortable about .making it happen.

 God is good and remember to keep the faith especially when those dark
 times are trying to take over.

 Richard H.


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[CMLHope] A bit of good news today

[sherri swanson]

Hi Everyone!

In the mist of all the bad news I've been getting lately, I got some good
news this afternoon. My Onc called me to tell me that my BCR/ABL was
undetectable.  So with that that good news still ringing in my ears, I went
for walk. AS I was walking it started to rain. I just didn't care. I
continued my walk like it was a sunny day and 85 degrees. I really needed
that good news.

L'chaim

Sherri

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Re: [CMLHope] CML visit

[sherri swanson]

Hi Jeanie,

Glad to hear the weather is good in FL.  The weather here north of Chicago
isn't that bad, but it is to cold for me. I like it nice and warm.  But
today is the first day of spring and I'm excited. I take Gleevec and
understand what you mean about side effects. I've had every side effect
there is to have with Gleevec and I've been on it for 13 years and still
have effects. But I'm not complaining.

Here's to Spring!

L'chaim

Sherri

On Thu, Mar 19, 2015 at 1:22 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Sherri.
 The weather is great here in fl.  Spring has sprung with blossoms all over
 the yard.  This is my favorite time of the year.  I also roam around my
 yard every day and the fragrance of the blooms is heavenly.
 Time to order my third refill for ponatinib.   I believe it's working
 good; just dealing with side effects.
 I hope every one is good.  John are you still off med?

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s

 On Mar 11, 2015, at 5:27 AM, sherri swanson swanson.sherri...@gmail.com
 wrote:

 Hi Susan

  You're right about it being great news that we get up every day. And now
 that spring is in sight and the days are getting longer, that makes getting
 up even brighter. Our snow here in northern Illinois is melting fast too.
 It is going to be in the upper 50s most of this week also. Hey I'm with
 your pup! I go out and roam around in the front yard, only I do it just to
 get some fresh air LOL!

  I hope you have a good trip when you come to Chicago in April. At least
 the weather should be nice. Here's to hoping they don't screw it up.

  I have insomnia so there will be no sleeping for me. But for the rest of
 you, I hope you all had a restful night.

  L'chaim,

  Sherri

 On Tue, Mar 10, 2015 at 10:54 PM, Richard H rbhuffm...@gmail.com wrote:

 I will be praying for you.

 Richard H.


 On Tuesday, March 10, 2015 at 5:31:27 AM UTC-5, greenie wrote:

  Hi  Group, As of last Tuesday I have lost 5 pounds and I don't know
 why.  Been eating O. K. so I went to my Reg. Doctor yesterday and I'm going
 over to get some blood work at 7 a.m.  Comprehensive metabolic panel, cbc
 (no diff), vitamin B12 level and TSH, Ultrasensitive.  Also he want's me to
 have a colonoscopy to screen for colon cancer Friday.  I really don't need
 2 different kinds of cancer so I'm worried.  Will let you all know what
 happens.

 greenie

  In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time,
 swanson@gmail.com writes:

  Richard,  That is great news about the your haemoglobin. I also think
 it's great that your drs are talking to one another.  That is so important.
 Last week, I had to get a transfusion as my counts were so low. I went
 to my onc and he did the usual blood draw and my WBC was 2.4.  That was
 enough to send me over to the hospital for type and cross match and a
 transfusion.

 I too am eager to hear about Marty and pray for him everyday.

 Sherri

 On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope 
 cml...@googlegroups.com wrote:

  Richard, excellent news and I'm happy to hear that your hemoglobin
 has stabilized.  Glad that your doctors are in sync, too, because that will
 certainly make your life easier. Yay!

 Marcie

 Sent from my iPhone

 On Mar 10, 2015, at 12:15 AM, Richard H rbhuf...@gmail.com wrote:

   I visited my VA ONC today and both ONCs are bck on the same page.
 The better news is it appears that my hemoglobin has stabilized at 10.5. we
 are going to move forward with the testing program until the end of May.
 Another piece of news that makes me very happy is that both ONC's works at
 Kansas University Cancer Center. The VA contracts it's Doctors and Fellows
 (Doctors in training).  They can access all my records at both offices with
 the new Cerner Medical Systems that are being installed world wide.

 I am anxiously waiting for more news from Marty, and him keeping him my
 prayers.

 Richard H.

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Re: [CMLHope] Checking in/ to all my CML friends

[sherri swanson]

Hi Joyce,

I'll be glad to send down when we get it back.  LOL  Right now it is only
in the 40s here. Not exactly as warm as it was, but as soon as those 70s
come back, I'll be sure to send it down your way.  As for the sun shinning,
we had that hit or miss. Yesterday, it was out late in the day and a very
welcome sight.

L'chaim,

Sherri

On Thu, Mar 19, 2015 at 10:53 PM, Joyce Mesnarich joy...@htc.net wrote:

 Haven't posted for a week or so, but I have been monitoring the site.
 Sherri, you said it is getting warmer in Northern Illinois and the snow is
 beginning to melt.  I guess you are planning on sending it down to us in
 Southern Illinois.  LOL  We will all feel better when it gets warmer and
 the sun shines more.

 Jeanne, so sorry to hear that you are still having ear  pain.  Stay on
 it.  You have been through a lot lately and I suppose you have put this ear
 thing at the bottom of the list.  So go for it now!  Glad to hear you are
 tolerating ponatinib.

 Greenie, glad to know your colonoscopy had a good outcome.  My husband has
 been through 2 of them in less than 2 years.  They insist he has blood in
 his stool, but both times they did a colonoscopy, endoscopy (down the
 throat and into the stomach), and he even swallowed the camera, just in
 case something was missed.  All tests came back ok.  That's good, but where
 is the problem  His blood counts go down, indicating he is losing blood
 and they go through the same song and dance with no answers.  Don't know
 what to do next.  Get the breast thing checked out quickly.  This, too, you
 will overcome, if it is indeed something.  May be nothing.  Now you know
 what all us women go through.  Just kiddinga little levity is needed
 sometime.  My thoughts and prayers are with you.

 Marty,  I know you are out there somewhere and probably your wife is
 checking this site from time to time.  Just know that we are all praying
 for you.  I know that the operation you just had is probably the hardest
 thing you may have gone through.I know the bone marrow transplant was
 no walk in the park.  But you have added a few years since then and it
 stands to reason that we don't have the same bounce back that we did when
 we were younger.  Just be patient and do whatever they tell you.within
 reason.  God bless and keep you!

 My husband, Wayne, has been on bosulif for a month now, after having to
 stop Sprycel in August because of pleural effusion.  He is doing very well,
 so far.  He is on a small dose (100 mg).  He will go to see Dr Talpaz in
 Michigan the middle of April for testing.  Then a few weeks later we will
 know if bosulif is working its magic.

Joyce in IL

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Re: [CMLHope] CML visit

[sherri swanson]

Hi Susan

 You're right about it being great news that we get up every day. And now
that spring is in sight and the days are getting longer, that makes getting
up even brighter. Our snow here in northern Illinois is melting fast too.
It is going to be in the upper 50s most of this week also. Hey I'm with
your pup! I go out and roam around in the front yard, only I do it just to
get some fresh air LOL!

 I hope you have a good trip when you come to Chicago in April. At least
the weather should be nice. Here's to hoping they don't screw it up.

 I have insomnia so there will be no sleeping for me. But for the rest of
you, I hope you all had a restful night.

 L'chaim,

 Sherri

On Tue, Mar 10, 2015 at 10:54 PM, Richard H rbhuffm...@gmail.com wrote:

 I will be praying for you.

 Richard H.


 On Tuesday, March 10, 2015 at 5:31:27 AM UTC-5, greenie wrote:

  Hi  Group, As of last Tuesday I have lost 5 pounds and I don't know
 why.  Been eating O. K. so I went to my Reg. Doctor yesterday and I'm going
 over to get some blood work at 7 a.m.  Comprehensive metabolic panel, cbc
 (no diff), vitamin B12 level and TSH, Ultrasensitive.  Also he want's me to
 have a colonoscopy to screen for colon cancer Friday.  I really don't need
 2 different kinds of cancer so I'm worried.  Will let you all know what
 happens.

 greenie

  In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time,
 swanson@gmail.com writes:

  Richard,  That is great news about the your haemoglobin. I also think
 it's great that your drs are talking to one another.  That is so important.
 Last week, I had to get a transfusion as my counts were so low. I went to
 my onc and he did the usual blood draw and my WBC was 2.4.  That was enough
 to send me over to the hospital for type and cross match and a transfusion.

 I too am eager to hear about Marty and pray for him everyday.

 Sherri

 On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope 
 cml...@googlegroups.com wrote:

  Richard, excellent news and I'm happy to hear that your hemoglobin has
 stabilized.  Glad that your doctors are in sync, too, because that will
 certainly make your life easier. Yay!

 Marcie

 Sent from my iPhone

 On Mar 10, 2015, at 12:15 AM, Richard H rbhuf...@gmail.com wrote:

   I visited my VA ONC today and both ONCs are bck on the same page.
 The better news is it appears that my hemoglobin has stabilized at 10.5. we
 are going to move forward with the testing program until the end of May.
 Another piece of news that makes me very happy is that both ONC's works at
 Kansas University Cancer Center. The VA contracts it's Doctors and Fellows
 (Doctors in training).  They can access all my records at both offices with
 the new Cerner Medical Systems that are being installed world wide.

 I am anxiously waiting for more news from Marty, and him keeping him my
 prayers.

 Richard H.

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Re: [CMLHope] CML visit

[sherri swanson]

Hi Greenie,

I've had all those tests and the colonscopy prep is the hardest part. I
know what you mean about not needing another cancer, I had to have a FNA
(Fine Needle Aspiration) on my thyroid in January as there is a pretty good
size mass on my right thyroid.  The good news is it is benign, but I was
worry until I got the report.
Hang in there and know I'm praying for you.

L'chaim,

Sherri


On Tue, Mar 10, 2015 at 10:05 AM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi Greenie and good to hear from you.  I think you are not alone in
 worrying about other cancers.  Let us know how your test come out.  I have
 had all the test except the colonoscopy.   The doctor has been wanting me
 to do that one, but just haven't felt up to it.
 Almost 2 months on ponatinib.  Haven't felt well on it at all, but wasn't
 feeling good before I started it.
 I hope everyone is good today. Stay positive Greenie.

 Prayers  Blessings Jeanie [image: ][image: ][image: ][image: ][image:
 ][image: ][image: ][image: ][image: ][image: ][image: ][image:
 ]. 18,s

 On Mar 10, 2015, at 6:31 AM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi  Group, As of last Tuesday I have lost 5 pounds and I don't know
 why.  Been eating O. K. so I went to my Reg. Doctor yesterday and I'm going
 over to get some blood work at 7 a.m.  Comprehensive metabolic panel, cbc
 (no diff), vitamin B12 level and TSH, Ultrasensitive.  Also he want's me to
 have a colonoscopy to screen for colon cancer Friday.  I really don't need
 2 different kinds of cancer so I'm worried.  Will let you all know what
 happens.

 greenie

  In a message dated 3/10/2015 4:00:08 A.M. Eastern Daylight Time,
 swanson.sherri...@gmail.com writes:

  Richard,  That is great news about the your haemoglobin. I also think
 it's great that your drs are talking to one another.  That is so important.
 Last week, I had to get a transfusion as my counts were so low. I went to
 my onc and he did the usual blood draw and my WBC was 2.4.  That was enough
 to send me over to the hospital for type and cross match and a transfusion.

 I too am eager to hear about Marty and pray for him everyday.

 Sherri

 On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope 
 cmlhope@googlegroups.com wrote:

  Richard, excellent news and I'm happy to hear that your hemoglobin has
 stabilized.  Glad that your doctors are in sync, too, because that will
 certainly make your life easier. Yay!

 Marcie

 Sent from my iPhone

 On Mar 10, 2015, at 12:15 AM, Richard H rbhuffm...@gmail.com wrote:

   I visited my VA ONC today and both ONCs are bck on the same page.  The
 better news is it appears that my hemoglobin has stabilized at 10.5. we are
 going to move forward with the testing program until the end of May.
 Another piece of news that makes me very happy is that both ONC's works at
 Kansas University Cancer Center. The VA contracts it's Doctors and Fellows
 (Doctors in training).  They can access all my records at both offices with
 the new Cerner Medical Systems that are being installed world wide.

 I am anxiously waiting for more news from Marty, and him keeping him my
 prayers.

 Richard H.

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Re: [CMLHope] CML visit

[sherri swanson]

Richard,  That is great news about the your haemoglobin. I also think it's
great that your drs are talking to one another.  That is so important.
Last week, I had to get a transfusion as my counts were so low. I went to
my onc and he did the usual blood draw and my WBC was 2.4.  That was enough
to send me over to the hospital for type and cross match and a transfusion.

I too am eager to hear about Marty and pray for him everyday.

Sherri

On Mon, Mar 9, 2015 at 11:19 PM, 'Marcie Goodman' via CMLHope 
cmlhope@googlegroups.com wrote:

 Richard, excellent news and I'm happy to hear that your hemoglobin has
 stabilized.  Glad that your doctors are in sync, too, because that will
 certainly make your life easier. Yay!

 Marcie

 Sent from my iPhone

 On Mar 10, 2015, at 12:15 AM, Richard H rbhuffm...@gmail.com wrote:

 I visited my VA ONC today and both ONCs are bck on the same page.  The
 better news is it appears that my hemoglobin has stabilized at 10.5. we are
 going to move forward with the testing program until the end of May.
 Another piece of news that makes me very happy is that both ONC's works at
 Kansas University Cancer Center. The VA contracts it's Doctors and Fellows
 (Doctors in training).  They can access all my records at both offices with
 the new Cerner Medical Systems that are being installed world wide.

 I am anxiously waiting for more news from Marty, and him keeping him my
 prayers.

 Richard H.

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Re: [CMLHope] U[PDATE FOR MARTY

[sherri swanson]

Take your time and rest. We'll all be waiting here for you upon your
return.  We're so happy for you. [?]

L'chaim,

Sherri

On Sat, Feb 28, 2015 at 11:52 PM, Richard H rbhuffm...@gmail.com wrote:

 How great to receive your post.  May you heal quickly.

 Richard H.

 On Saturday, February 28, 2015 at 8:37:14 PM UTC-6, wa2yyx wrote:

 Hello to everyone,

 Now you all know why I do what I do. I love all of you just as my
 extended family. I am so honored and grateful to be a part of your lives,
 your very precious lives.

 I would like to share with all of you, a letter that I wrote to my kidney
 donors family. I would hopefully respect that they have the opportunity of
 reading it one day.

 18's,

 Marty

  *February 28th 2015*

 *I write this to the family of the young man that gave of himself in
 order that I can survive.*

 *It has been four days since I received a kidney transplant from your
 loved one. I am in pain right now but I want to write this without any pain
 medication because I would like to have a clear mind so that I can speak to
 you from my heart and soul.*

 *It is very important to me to be able to write this to you, and I truly
 hope that you receive it. I hope that it is something that may give you
 less hurt in your hearts.*

 *First, I would like to send you my deepest condolences on the loss of
 your loved one. When I first got the call from the hospital that there was
 a matching kidney for me I was very happy. However, I also felt a great
 deal of guilt that someone had to be deceased in order for me to receive
 this very precious gift of life.*

 *I believe that there is a reason for everything that happens in this
 world. Sometimes we may not understand what these reasons are, and
 sometimes it hurts, but there is a reason for everything.*

 *I also believe that if someone does something to try and help someone
 else then it will come back to that person. More than twenty five years ago
 I had Leukemia and had to go through a bone marrow transplant. In order to
 do this I had to have total body radiation and chemotherapy.*

 *I remember the first time that I went into the radiation chamber. I got
 down on my knees, clasped my hands in front of me and made a promise to
 GOD. I prayed that if I were to survive I would go on to try and help
 others also go through this.*

 *And, this is something that I have done more than one hundred times
 since. This is what I meant when I said that if you try to help someone it
 will come back to you. This is what your loved one did for me. He has given
 me the opportunity to continue on, and even though I do not know his name I
 will continue to do this in his name. GOD knows exactly who he is, and I
 promise you that I will continue to dedicate my life to your loved one for
 giving of him to me.*

 *I truly hope that you will eventually receive my letter. Perhaps one of
 these days I might have the opportunity of meeting you.*


 *Sincerely,*

 *Marty*


 On Sat, Feb 28, 2015 at 12:31 AM, Richard H rbhuf...@gmail.com wrote:

 This was posted to CML2 on YAHOO.

 Hello cml chums!
I have wonderful news from/about our friend Marty!
   Marty left a message at my home sharing that he HAS had his transplant
 (0: is doing well(0: and that he greatly appreciates all of our prayers(0:
 !   (collective sigh of relief from all of us, right?)
Let's continue to send our love, support and prayers to our amazing
 friend.

 (0:  Caryl


 This is great news.  I am now praying for a rapid recovery so he can get
 home soon.

 Richard H.

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Re: [CMLHope] U[PDATE FOR MARTY

[sherri swanson]

This is wonderful news!!!

Here is a prayer for Marty that is said in the synagogue for those who are
ill or recovering from illness or accidents.

May the One who blessed our ancestors --

Patriarchs Abraham, Isaac, and Jacob,

Matriarchs Sarah, Rebecca, Rachel, and Leah --

bless and heal the one who is ill: Marty .

May the Holy Blessed One

overflow with compassion upon him,

to restore him,

to heal him,

to strengthen him,

to enliven him.

The One will send him, speedily,

a complete healing --

healing of the soul and healing of the body --

along with all the ill, among the people of Israel and all humankind,

soon, speedily, without delay,

and let us all say: Amen!



http://www.myjewishlearning.com/practices/Ritual/Prayer/Synagogue_and_Religious_Leaders/How_to_Choose_a_Synagogue.shtml

On Fri, Feb 27, 2015 at 11:31 PM, Richard H rbhuffm...@gmail.com wrote:

 This was posted to CML2 on YAHOO.

 Hello cml chums!
I have wonderful news from/about our friend Marty!
   Marty left a message at my home sharing that he HAS had his transplant
 (0: is doing well(0: and that he greatly appreciates all of our prayers(0:
 !   (collective sigh of relief from all of us, right?)
Let's continue to send our love, support and prayers to our amazing
 friend.

 (0:  Caryl


 This is great news.  I am now praying for a rapid recovery so he can get
 home soon.

 Richard H.

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Re: [CMLHope] Doctor's Visit

[sherri swanson]

Hi Beth,

I was think the same thing you were. I've been sending all the good
thoughts I could find to Marty and since we've not heard from him, it must
have been a match. Let's just keep praying that the kidney was a match and
everything goes well. He is such a wonderful person.

Have a good day.

L'chaim,

Sherri

On Wed, Feb 25, 2015 at 4:37 PM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote:

 Hi all. I think our not hearing from Marty, is a sign that the kidney was
 a match. otherwise he would have posted that it did not work out and he is
 still waiting? Does anybody think the same? If this is true,then he would
 have had his surgery...so lets all keep sending healing energy and good
 thoughts, love, his way.

  I am wondering, if anyone who has been on sprycel, has developed any
 other forms of cancer while on it? Thanks, Beth


 -Original Message-
 From: ICANDOALLTTC via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Wed, Feb 25, 2015 8:10 am
 Subject: Re: [CMLHope] Doctor's Visit

   Hi Richard and good to hear from you.
  I had the worst side effects on Gleevec than any other TKI I have taken,
 except for the one I am on now, Ponatinib.  Boils, cramps, nausea and etc.
 Yes and eye bleeds.  Also and infected eye that never seemed to heal.
 Ponatinib is hitting me with everything its got.  I am seeing lights that
 aren't there and things in my side vision that aren't there.  When I close
 my eyes at night, the things are still there.  I was never on LSD but this
 feels like something like it. Going for blood check up tomorrow; pray that
 it comes out ok.
  Has anyone heard from Marty?  Pray that he is ok.
  Blessings
  Jeanie3

  In a message dated 2/24/2015 1:09:55 P.M. Eastern Standard Time,
 cmlhope@googlegroups.com writes:

 Richard, that is great news!  I pray that the Gleevec will continue to
 work well and the side effects will stay away.  So nice to hear good
 tidings!  Marcie


  -Original Message-
 From: Richard H rbhuffm...@gmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Tue, Feb 24, 2015 12:17 pm
 Subject: [CMLHope] Doctor's Visit


   I received my test results yesterday.  It shows a major molecular
 reduction  down to 1.579% on the international scale.  The side effects (a
 long list) are minimal.  The most aggravating are watery, fuzzy vision
 and leg, foot cramps from twinges to a pain level 3.  I started on 400mg
 Gleevec and in 20 days I had gained 10 lbs.  I stopped Gleevec for  7
 days.  I restarted 300mg Gleevec and it has been great so far.  I have
 changed when I take Gleevec from evening to midday, as it was causing
 indigestion at bedtime.  I have been able maintain my weight and have not
 shown any weight increase on 300mg Gleevec.

  Richard H.
  Dxd 2/2003
 400mg Gleevec 3/2003
  Undetectable 11/03
  RT-PCR negative 11/04
  QT-PCR .003 11/05
  RBC 8.
  Gleevec Vacation 11/06-6/07
  Iron infusion 11/06
  Transfusions 12/06-5/07
  QT-PCR .007
  Gleevec 1/08 -5/08
  Procrit 8/08-11/08
  Gleevec Vacation 7/08-12/11/14
  QT-PCR .003  4/09
  QT-PCR .00156/09
  QT-PCR .00219/09
  QT-PCR .00281/10
  QT-PCR .001  4/10
  QT-PCR .00468  10/10
  QT-PCR 1.049% 2/11
  QT-PCR .0612% 8/11
  QT-PCR 2.616 %2/12
  QT-PCR 2.410% 8/12
  RT-PCR 9.183% 4/13
  RT-PCR 4.57%   6/13
  RT-PCR 10.183%   10/13
  RT-PCR 10.577%   2/14
  RT-PCR 16.050%   5/14
  RT-PCR Approx. 20% 10/14
  Restarted 400mg Gleevec 12/11/14
  Stopped 400mg Gleevec 12/20/14 Edema in legs 10 lbs. in 10 days
  Started 300 mg Gleevec 1/27/14
  QT-PCR 1.579%   2/15


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Re: [CMLHope] Re: Kidney transplant

[sherri swanson]

Marty,

That is great news. Please let it be a match. Just to let you know, I'm
still praying.

L'Chaim

Sherri

On Mon, Feb 23, 2015 at 11:08 PM, Richard H rbhuffm...@gmail.com wrote:

 Great news MartyMy prayers are with you.. This was a great day, I also
  received good news today.  Will more post tomorrow.

 Richard H.



 On Monday, February 23, 2015 at 6:10:19 PM UTC-6, wa2yyx wrote:

 I thought that everyone should know, When I arrived at dialysis this
 morning I had a phone call from my transplant coordinator. She told me that
 there is a kidney for me and I will have to go to the hospital late this
 evening. They still need to make sure that the cross match is good. If it
 isn't then back to the drawing board but if it is good then the surgery
 should take place tomorrow morning.

 I would like to thank you all for all of your good wishes and prayers.

 I will probably be out of touch for a while.

 18's,

 Marty

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Re: [CMLHope] Greenie and all

[sherri swanson]

Hey Greenie,

Sorry to hear that you are having so much trouble with nausea.  I too
suffer with that everyday. My doctor gave me a patch that I wear when it
gets really bad as I have a very hard time swallowing pills because of my
thyroid issue. As a matter of fact, I even dissolve the Gleevec in apple
juice so I can take it everyday. I've been taking Gleevec for 13 years and
I'm nauseous more day than not. So I understand how you feel.

I too have taken a Gleevec vacation. I too did have the cells show up and
had to go back on the Gleevec. And I had the same side effects the second
time around that I had the first. I really hate these side effects
especially the rash. The itching makes me crazy.

I also use to see Dr. Tallman. What a small world. He was such a nice guy,
I thought. Do you see his replacement, it's a woman I believe?

I would hope it's just the Gleevec and nothing more. Don't let your anxiety
get the better of this. Take some deep breaths and find something else to
occupy your time. If you have a hobby, spend your time with that. It'll be
better for you in the long run.

L'chaim

Sherri



On Sat, Jan 24, 2015 at 11:22 PM, 'Susan Zimmerman' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hey Greenie and all,

  So sorry to hear you're having these struggles.  Nausea is like having
 the flu all the time.  The doc (our mutual Altman) prescribed a nausea pill
 when I began bosulif. I've used it about 4 times since going on bosulif.
  (10 mos. ago).   If it continues after you've gone off gleevec for a week
 or more, I would ask for some.  You have lots of options, but I truly hope
 a quick vacation will do the trick.  We might not get to meet in New
 Carlisle if you can't get this problem solved~!  And I had such a good time
 meeting with you and your sweet wife, we'll need to do it again when you
 are in the area.

  I went to Chicago Northwestern Medical again last Thursday.  I now get 3
 months in between visits since I'm in remission.  I do have to go to a
 cardiologist to check out a few chest pains I've had, and a neurologist for
 the shakes that have been going on for far too long.  I'd like to blame
 everything on bosulif, but I don't think I can.

  You are sure in my thoughts and prayers about your nausea.  Enjoy your
 vacation from gleevec and sure hope it helps!
 All you guys have been posting so much.  I read, but I can't always write
 with other things going on.  This time I'm reporting a praise report about
 being in remission, and asking for prayers about the chest pains and
 shakes!!!  Rearranging my blood pressure medicine and one other to see if
 it improves things before the neurologist.  It was too strong I
 thinkwe'll see.  God bless you all!!!

  18's,

 Susan
 -Original Message-
  From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Sat, Jan 24, 2015 3:25 pm
 Subject: [CMLHope] Greenie

  Hi Greenie
 Check your potassium and ect.   You might have an imbalance.   That
 happened to me when gleevec quit working.   I was so sick.   Do you have
 diarrhea?I had both.   I finally started taking psyllium
 seed--crushed--you can get them at health food store. Just go by the
 directions.
 It cured the diarrhea but I had to finally change tkis.


 Blessings Jeanie 18's

 On Jan 24, 2015, at 11:39 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

   Hi Richard and hang in there.   I wake up with nausea every morning
 which I think is the hydrea.  Do you eat a big meal with gleevec?  I know I
 had to and no spicy foods.  Your success on gleevec has been great.  It
 quit on me after 5 years.  You could just have a bug.
 Good luck and blessings.
 Jeanie

 Sent from my iPhone

 On Jan 24, 2015, at 10:56 AM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

   Hi to my friends in our group,  well I've been on Gleevec for 15 years
 and 14 days all of a sudden for the last 4 days I'm having nausea
 problems.  I'm taking some promethazine that helps some what but it's not a
 fun thing.  I have no idea what started it either.  I had this problem
 before when we lived in Springfield, MO. I got over heated and got hit with
 nausea every day for a little more then 2 years then I awoke one morning
 and it was like someone turned off the switch and it was gone.  This time
 of the year it's not hot here so I know that's not what caused this problem.

 I'm going to take a Gleevec break for a week or two to clean out my system
 and hope that I get back to normal.  I did this before about 6 years ago
 when I had a sinus infection and the doctor back in Indiana put me on and
 anabolic that interfered with my Gleevec so we stopped Gleevec for 26
 days.  After getting blood work some cancer cells did show back up in my
 blood work but after stating Gleevec again the next test showed that I was
 clean again.

 My doctor at that time was doctor Tallman and he gave me a call and said
 well if it worked before it will 

Re: [CMLHope] Big test today

[sherri swanson]

Hey Marty,

You’re correct. If the test comes back inconclusive, then I'll be back in
that procedure room having it done all over again. But at least time I'll
know what to expect. And I still won't wont like it.  It is better than not
knowing.

And once again my dear Marty you are correct, it truly is the meaning of
L'chaim and no one should miss that. Not on single moment of it. I
personally am glad that you are here to share in my life. So you keep doing
whatever you have to and if there is anything I can do to help you, let me
know.

L'chaim my friend, L'chaim!

Sherri


On Fri, Jan 23, 2015 at 8:33 AM, Myvety2k via CMLHope 
cmlhope@googlegroups.com wrote:

  Going back to Disco days the song We Are Family...

 greenie

  In a message dated 1/23/2015 7:26:14 A.M. Eastern Standard Time,
 wa2...@gmail.com writes:

 Greenie,

 I also want to get this wait over with, and the way that I look at it is
 we all help each other not just me. This is what this site is all about one
 helping the other just compare it to a family situation.

 18's,

 Marty

 On Thu, Jan 22, 2015 at 9:43 PM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  Marty,  I'm hoping for you that the wait is not much longer.  You are
 one person that all of us want to be around for another 100 years.  Your
 always their when we need advice.


 greenie

  In a message dated 1/22/2015 6:28:20 P.M. Eastern Standard Time,
 wa2...@gmail.com writes:

 Hi Greenie,

 You have me beat hands down. I used to call them a real pain in my azz

 Glad I don't have to have them anymore. Now just waiting for another
 adventure in my life to happen, a kidney transplant. I probably have more
 of others parts in my body then most people do.

 Since they are human parts does this make me a bionic man? Hey if we
 can't laugh then we cry and I am not a cry baby.

 18's,

 Marty

 On Thu, Jan 22, 2015 at 12:42 PM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Marty,  their may have been a few more in their I know I was
 getting one every 4 month for 7 to 8 years.  Next time I'm in Chicago I'll
 have to check with them because before going into the study in Chicago I
 had 2 at the other Doctors office in Munster, IN.

 greenie

  In a message dated 1/22/2015 12:14:41 P.M. Eastern Standard Time,
 wa2...@gmail.com writes:

 Hi Greenie,

  Wow 27 of them! You got me beat, I only had 17. LOL

 18's,

 Marty


 On Thu, Jan 22, 2015 at 7:24 AM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Marty, I'm glad I don't have to get any more BMB, blood work
 instead.  I had 27 of them and their not a lot of fun.  My back is like a
 rocky road with all the bumps in it.

 greenie

  In a message dated 1/22/2015 7:15:00 A.M. Eastern Standard Time,
 wa2...@gmail.com writes:

 Hi Sherri,

 I had one and let me tell you that it is no where close to having a BMB
 which I had 17 of them. I wish you the very best of luck and I know that
 your frightened and it's difficult to not worry but you go in there as a
 winner!

 18's,

 Marty



 On Thu, Jan 22, 2015 at 4:25 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

  Hi everyone!

 This morning I'm having an Ultrasound Guided Fine Needle Aspiration
 done on my thyroid. One of my doctors found a mass on my thyroid that is
 about half the size of my right lobe and sent me for a regular ultrasound
 with the hopes that he would be able to see something. Well, me being me,
 of course he couldn't and off to the ENT I went for even more test before 
 I
 was told I would have to have this one this morning.

 This procedure takes 2 hours as it requires multiple insertions into
 my neck with this very fine needle. The only thing I could relate it to 
 was
 my BMA and was wondering if anyone here has had one and could tell me if
 they are similar to the bone marrow aspiration? Gee, 2 hours of multiple
 insertions in the neck over insertions in the back side. Right now, the
 back side is sounding a whole lot better. I mean what's a few more holes 
 in
 my bones there? LOL [?]

 Wish me luck.

 L'chaim

 Sherri

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Re: [CMLHope] Big test today

[sherri swanson]

Hi Marty,

I went in a winner and came out one too. It takes a lot to keep me down. It
was no fun and it was painful but here I am just like a bad penny. [?]  My
Doctor should have the results in about a week and we'll decide next steps
from there. This is a procedure that I hope to never undergo again.

Thanks for the kind words.

L'chaim

Sherri

On Thu, Jan 22, 2015 at 8:43 PM, Myvety2k via CMLHope 
cmlhope@googlegroups.com wrote:

  Marty,  I'm hoping for you that the wait is not much longer.  You are
 one person that all of us want to be around for another 100 years.  Your
 always their when we need advice.


 greenie

  In a message dated 1/22/2015 6:28:20 P.M. Eastern Standard Time,
 wa2...@gmail.com writes:

 Hi Greenie,

 You have me beat hands down. I used to call them a real pain in my azz

 Glad I don't have to have them anymore. Now just waiting for another
 adventure in my life to happen, a kidney transplant. I probably have more
 of others parts in my body then most people do.

 Since they are human parts does this make me a bionic man? Hey if we can't
 laugh then we cry and I am not a cry baby.

 18's,

 Marty

 On Thu, Jan 22, 2015 at 12:42 PM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Marty,  their may have been a few more in their I know I was getting
 one every 4 month for 7 to 8 years.  Next time I'm in Chicago I'll have to
 check with them because before going into the study in Chicago I had 2 at
 the other Doctors office in Munster, IN.

 greenie

  In a message dated 1/22/2015 12:14:41 P.M. Eastern Standard Time,
 wa2...@gmail.com writes:

 Hi Greenie,

  Wow 27 of them! You got me beat, I only had 17. LOL

 18's,

 Marty


 On Thu, Jan 22, 2015 at 7:24 AM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Marty, I'm glad I don't have to get any more BMB, blood work
 instead.  I had 27 of them and their not a lot of fun.  My back is like a
 rocky road with all the bumps in it.

 greenie

  In a message dated 1/22/2015 7:15:00 A.M. Eastern Standard Time,
 wa2...@gmail.com writes:

 Hi Sherri,

 I had one and let me tell you that it is no where close to having a BMB
 which I had 17 of them. I wish you the very best of luck and I know that
 your frightened and it's difficult to not worry but you go in there as a
 winner!

 18's,

 Marty



 On Thu, Jan 22, 2015 at 4:25 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

  Hi everyone!

 This morning I'm having an Ultrasound Guided Fine Needle Aspiration
 done on my thyroid. One of my doctors found a mass on my thyroid that is
 about half the size of my right lobe and sent me for a regular ultrasound
 with the hopes that he would be able to see something. Well, me being me,
 of course he couldn't and off to the ENT I went for even more test before I
 was told I would have to have this one this morning.

 This procedure takes 2 hours as it requires multiple insertions into my
 neck with this very fine needle. The only thing I could relate it to was my
 BMA and was wondering if anyone here has had one and could tell me if they
 are similar to the bone marrow aspiration? Gee, 2 hours of multiple
 insertions in the neck over insertions in the back side. Right now, the
 back side is sounding a whole lot better. I mean what's a few more holes in
 my bones there? LOL [?]

 Wish me luck.

 L'chaim

 Sherri

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 To post

[CMLHope] Big test today

[sherri swanson]

Hi everyone!

This morning I'm having an Ultrasound Guided Fine Needle Aspiration done on
my thyroid. One of my doctors found a mass on my thyroid that is about half
the size of my right lobe and sent me for a regular ultrasound with the
hopes that he would be able to see something. Well, me being me, of course
he couldn't and off to the ENT I went for even more test before I was told
I would have to have this one this morning.

This procedure takes 2 hours as it requires multiple insertions into my
neck with this very fine needle. The only thing I could relate it to was my
BMA and was wondering if anyone here has had one and could tell me if they
are similar to the bone marrow aspiration? Gee, 2 hours of multiple
insertions in the neck over insertions in the back side. Right now, the
back side is sounding a whole lot better. I mean what's a few more holes in
my bones there? LOL [?]

Wish me luck.

L'chaim

Sherri

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Re: [CMLHope] Hi all finally going in for an endoscopy next week.

[sherri swanson]

When I had mine done, they found ulcers and adenoma's. My GI removed the
adenoma's while I was under and I had to be rechecked every 3 months in the
beginning to be sure they didn't come back. They haven't come back but my
ulcers have. LOL

Good luck with your BMA.

On Thu, Jan 15, 2015 at 4:29 PM, bkbarney via CMLHope 
cmlhope@googlegroups.com wrote:


 good luck on your BMB tomorrow Jeannie. I will be thinking of you. AS for
 results of endoscopies, I had a small stomach ulcer..the result of taking
 NSAIDS on an empty stomach...  to battle a broken hand. it was years ago
 but Iearned my lesson.
 I never take any pain med without food.

  thinking of you. big hug,. Beth
 -Original Message-
 From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Thu, Jan 15, 2015 12:34 pm
 Subject: Re: [CMLHope] Hi all finally going in for an endoscopy next week.

  Hi all and thanks so much for the updates in endoscopy.
 Did anyone have anything discovered during the procedure?
 I have had an ongoing pain in my right side.  I am hoping they can solve
 the mystery.
 Getting the Bma early in the morning.   No food or drink after midnight.
 Sure will miss my morning cup if coffee.
 They also want to do a ct scan but put that off for a couple of weeks.
 I had one done last year.
 Blessings
 Jeanie


 Sent from my iPhone

 On Jan 15, 2015, at 12:43 AM, Richard H rbhuffm...@gmail.com wrote:

   You are correct about both.  One time, I had both back to back.  The
 Dr. didn't care for my remark about using clean equipment so now they
 schedule them at different times.

 On Wednesday, January 14, 2015 at 5:19:39 PM UTC-6, Beth wrote:

 Yes Jeannie, I have had an endoscopyNO problem...at least for me.
 Twilight meds, remember nothingnot even a sore throat
 afterwardsI've had two of them. several years apart. Hope yours goes as
 well as mine. Easier on the body than a colonoscopy. Good luck with the
 bone marrow biopsy Friday. glad they will take a good look at what is going
 on and can reset from there...So sorry you are so nauseated.Take good
 care...and jeannie, if you feel at all like talking, happy to listen. Feel
 free to email me at personal email and I can give you phone number.

  Beth


 -Original Message-
 From: 'Icandoallttc' via CMLHope cml...@googlegroups.com
 To: cmlhope cml...@googlegroups.com
 Sent: Wed, Jan 14, 2015 4:23 pm
 Subject: Re: [CMLHope] Hi all finally going in for an endoscopy next week.

  Anyone have an endoscopy ? Jeanie

 Sent from my iPhone

 On Jan 14, 2015, at 2:14 PM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

   Maybe they can find out why my side is hurting.
 Blessing everyone
 Jeanie

 Sent from my iPhone

 On Jan 14, 2015, at 10:57 AM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

   They put you to sleep for Bma.

 Sent from my iPhone

 On Jan 14, 2015, at 10:56 AM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

   Hi it's not me who lost their dad-- I lost mine many years ago.
 I am still so nauseas.
 Hanging in there.
 Doing Bma fri.
 Blessings
 Jeanie


 Sent from my iPhone

 On Jan 13, 2015, at 4:06 AM, sherri swanson swanson@gmail.com
 wrote:

   Jeanie,

  I'm so sorry for your loss. You will always have them in your heart.
  I lost my parent a long time ago but I miss them as if it were
 yesterday. When I read your message, I looked at their photo and asked them
 to take good care of your dad.

  L'chaim,

  Sherri


 On Mon, Jan 12, 2015 at 1:14 PM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

  Thank you Greenie
 I need that.
 Blessings
  Jeanie

 Sent from my iPhone

 On Jan 12, 2015, at 1:30 PM, Myvety2k via CMLHope 
 cml...@googlegroups.com wrote:

   Hi Jeanie, hang in their,  I'm thinking good thoughts and passing them
 on to you.

 greenie

  In a message dated 1/12/2015 1:08:27 P.M. Eastern Standard Time,
 cml...@googlegroups.com writes:

 Thanks Susan.
 I'm hanging in there!!!
 Blessings.
 Jeanieemoji_u1f41f.pngemoji_u1f41f.pngemoji_u1f41f.png

 Sent from my iPhone

 On Jan 11, 2015, at 11:17 PM, 'Susan Zimmerman' via CMLHope 
 cml...@googlegroups.com wrote:

  Aw Marcie!

  I am so sorry for your loss, dear one.  I know you've been being a good
 caregiver for several years to your dad.  You will be rewarded some day for
 that.  My heart hurts for you, so will surely be lifting you in prayer.  No
 matter what the age, the loss is huge when we are the ones left behind.  It
 was so kind of your rabbi to mention your CML battle.  I pray you stop
 having those horrible cramps, too. Traveling mercies for you all.

  And Jeanie, also know what it's like to have a bad day from hydrea.
  Many (including me) felt like they have the flu with the nausea, and I
 pray this will not last long at all.  A new day is coming, and I sure do
 hope your doc puts you on something that works! (maybe bosulif?)  Here's
 wishing you the best, dear one

Re: [CMLHope] Hi all finally going in for an endoscopy next week.

[sherri swanson]

Hi Jeanie,

Yup, I've had them too. I've had 15 of them to exact. For me they were
painless. I had general anaesthesia and woke up as they were taking me to
recovery.  I have a lot of trouble with anaesthesia, so me waking up while
they were taking me to recovery was no big surprise. I once woke up during
the endoscopy itself, but I don't remember anything. LOL  I hope everything
goes well for you and they find out what is bothering.

L'chaim

Sherri

On Wed, Jan 14, 2015 at 11:43 PM, Richard H rbhuffm...@gmail.com wrote:

 You are correct about both.  One time, I had both back to back.  The Dr.
 didn't care for my remark about using clean equipment so now they schedule
 them at different times.

 On Wednesday, January 14, 2015 at 5:19:39 PM UTC-6, Beth wrote:

 Yes Jeannie, I have had an endoscopyNO problem...at least for me.
 Twilight meds, remember nothingnot even a sore throat
 afterwardsI've had two of them. several years apart. Hope yours goes as
 well as mine. Easier on the body than a colonoscopy. Good luck with the
 bone marrow biopsy Friday. glad they will take a good look at what is going
 on and can reset from there...So sorry you are so nauseated.Take good
 care...and jeannie, if you feel at all like talking, happy to listen. Feel
 free to email me at personal email and I can give you phone number.

  Beth


 -Original Message-
 From: 'Icandoallttc' via CMLHope cml...@googlegroups.com
 To: cmlhope cml...@googlegroups.com
 Sent: Wed, Jan 14, 2015 4:23 pm
 Subject: Re: [CMLHope] Hi all finally going in for an endoscopy next week.

  Anyone have an endoscopy ? Jeanie

 Sent from my iPhone

 On Jan 14, 2015, at 2:14 PM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

   Maybe they can find out why my side is hurting.
 Blessing everyone
 Jeanie

 Sent from my iPhone

 On Jan 14, 2015, at 10:57 AM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

   They put you to sleep for Bma.

 Sent from my iPhone

 On Jan 14, 2015, at 10:56 AM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

   Hi it's not me who lost their dad-- I lost mine many years ago.
 I am still so nauseas.
 Hanging in there.
 Doing Bma fri.
 Blessings
 Jeanie


 Sent from my iPhone

 On Jan 13, 2015, at 4:06 AM, sherri swanson swanson@gmail.com
 wrote:

   Jeanie,

  I'm so sorry for your loss. You will always have them in your heart.
  I lost my parent a long time ago but I miss them as if it were
 yesterday. When I read your message, I looked at their photo and asked them
 to take good care of your dad.

  L'chaim,

  Sherri


 On Mon, Jan 12, 2015 at 1:14 PM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

  Thank you Greenie
 I need that.
 Blessings
  Jeanie

 Sent from my iPhone

 On Jan 12, 2015, at 1:30 PM, Myvety2k via CMLHope 
 cml...@googlegroups.com wrote:

   Hi Jeanie, hang in their,  I'm thinking good thoughts and passing them
 on to you.

 greenie

  In a message dated 1/12/2015 1:08:27 P.M. Eastern Standard Time,
 cml...@googlegroups.com writes:

 Thanks Susan.
 I'm hanging in there!!!
 Blessings.
 Jeanieemoji_u1f41f.pngemoji_u1f41f.pngemoji_u1f41f.png

 Sent from my iPhone

 On Jan 11, 2015, at 11:17 PM, 'Susan Zimmerman' via CMLHope 
 cml...@googlegroups.com wrote:

  Aw Marcie!

  I am so sorry for your loss, dear one.  I know you've been being a good
 caregiver for several years to your dad.  You will be rewarded some day for
 that.  My heart hurts for you, so will surely be lifting you in prayer.  No
 matter what the age, the loss is huge when we are the ones left behind.  It
 was so kind of your rabbi to mention your CML battle.  I pray you stop
 having those horrible cramps, too. Traveling mercies for you all.

  And Jeanie, also know what it's like to have a bad day from hydrea.
  Many (including me) felt like they have the flu with the nausea, and I
 pray this will not last long at all.  A new day is coming, and I sure do
 hope your doc puts you on something that works! (maybe bosulif?)  Here's
 wishing you the best, dear one.

  Love and 18's,

   Susan

 -Original Message-
 From: 'Marcie Goodman' via CMLHope cml...@googlegroups.com
 To: cmlhope cml...@googlegroups.com
 Sent: Sun, Jan 11, 2015 10:59 pm
 Subject: Re: [CMLHope] Jeanie's relapse

  Hi Jeanie,

  So sorry you are having a tough time. I'm praying for you to have good
 test results and a much better week.

  My 94 year old father passed away on Friday, funeral was today. During
 evening prayers our rabbi asked that everyone pray for not only my father
 and our family but for our group struggling with the impact of CML. My dad
 hated the fact that I had this illness and knew that I had such a wonderful
 online support family.

  So lots of prayers for you and all of us headed out from Baltimore all
 week!

  Much love,

  Marcie

 Sent from my iPhone

 On Jan 11, 2015, at 9:33 AM, 'Icandoallttc' via CMLHope 
 cml...@googlegroups.com wrote:

   Hi Marty.
 I feel

Re: [CMLHope] Jeanie's relapse

[sherri swanson]

Jeanie,

I'm so sorry for your loss. You will always have them in your heart.
I lost my parent a long time ago but I miss them as if it were yesterday.
When I read your message, I looked at their photo and asked them to take
good care of your dad.

L'chaim,

Sherri


On Mon, Jan 12, 2015 at 1:14 PM, 'Icandoallttc' via CMLHope 
cmlhope@googlegroups.com wrote:

 Thank you Greenie
 I need that.
 Blessings
 Jeanie

 Sent from my iPhone

 On Jan 12, 2015, at 1:30 PM, Myvety2k via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Jeanie, hang in their,  I'm thinking good thoughts and passing them
 on to you.

 greenie

  In a message dated 1/12/2015 1:08:27 P.M. Eastern Standard Time,
 cmlhope@googlegroups.com writes:

 Thanks Susan.
 I'm hanging in there!!!
 Blessings.
 Jeanie[image: ][image: ][image: ]

 Sent from my iPhone

 On Jan 11, 2015, at 11:17 PM, 'Susan Zimmerman' via CMLHope 
 cmlhope@googlegroups.com wrote:

  Aw Marcie!

 I am so sorry for your loss, dear one.  I know you've been being a good
 caregiver for several years to your dad.  You will be rewarded some day for
 that.  My heart hurts for you, so will surely be lifting you in prayer.  No
 matter what the age, the loss is huge when we are the ones left behind.  It
 was so kind of your rabbi to mention your CML battle.  I pray you stop
 having those horrible cramps, too. Traveling mercies for you all.

 And Jeanie, also know what it's like to have a bad day from hydrea.  Many
 (including me) felt like they have the flu with the nausea, and I pray this
 will not last long at all.  A new day is coming, and I sure do hope your
 doc puts you on something that works! (maybe bosulif?)  Here's wishing you
 the best, dear one.

 Love and 18's,

  Susan

 -Original Message-
 From: 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Sun, Jan 11, 2015 10:59 pm
 Subject: Re: [CMLHope] Jeanie's relapse

  Hi Jeanie,

 So sorry you are having a tough time. I'm praying for you to have good
 test results and a much better week.

 My 94 year old father passed away on Friday, funeral was today. During
 evening prayers our rabbi asked that everyone pray for not only my father
 and our family but for our group struggling with the impact of CML. My dad
 hated the fact that I had this illness and knew that I had such a wonderful
 online support family.

 So lots of prayers for you and all of us headed out from Baltimore all
 week!

 Much love,

 Marcie

 Sent from my iPhone

 On Jan 11, 2015, at 9:33 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Marty.
 I feel so bad today!!!
 Thinks it's from the hydrea.
 I will print that out and keep it close.
 I love psalms also.
 Keep praying.
 Jeanie 18's

 Sent from my iPhone

 On Jan 11, 2015, at 8:05 AM, Marty Gartenberg wa2...@gmail.com wrote:

  Jeanie, I know that your feeling low right now but things will work out
 for you. You must have this in your heart and I know that you do. FOCUS.

 This was something that was given to me by one of my close friends when I
 had to live in that plastic bubble for all of those many months. I would
 read it all the time and I am now passing it on to you, and it is being
 sent to you from my heart because I remember my doubts but then again I
 also remember my strengths.

  EXPECT THE BEST, MIND OVER MATTER. SUCCESS IS A FUNCTION OF SELF
 CONFIDENCE. TO HAVE SUCCESS AT ANYTHING YOU MUST FIRST LEARN TO BELIEVE IN
 YOURSELF. IF YOU EXPECT THE WORSE THEN THAT IS EXACTLY WHAT YOU WILL GET
 (MIND OVER MATTER) IF YOU EXPECT THE BEST THEN THAT IS WHAT YOU WILL GET.
 WHAT WE HAVE TO LEARN TO DO IS TO CHANGE OUR MENTAL HABITS, OUR STATES OF
 MIND. LEARN TO EXPECT AND NOT TO DOUBT. BY DOING THIS YOU BRING EVERYTHING
 INTO THE REALM OF POSSIBILITY. WHEN YOU LEARN TO BELIEVE THEN WHAT YOU
 THOUGHT TO BE IMPOSSIBLE THEN MOVES INTO THE AREA OF POSSIBILITY.
 EVERY GREAT THING EVENTUALLY BECOMES POSSIBLE FOR YOU. MY BELIEF AT THE
 BEGINNING OF A DOUBTFUL UNDERTAKING IS THE ONE THING THAT INSURES THE
 SUCCESSFUL OUTCOME...
 FOCUS...

 Yes Jeanie you just keep on focusing because you are much more powerful
 then you think.

 Now you know why I keep on sending 18's.

 18's,

 Marty

 On Sat, Jan 10, 2015 at 10:38 AM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Marty
 Thanks for you uplifting message.
 I am back to square one with my counts--
 700 thousand platelets
 163.28 WBC
 ANC high
 Creatine high
 Potassium high
 Took me off sprycel.
 Allipurinoll 2 pills
 Hydrea 3 twice a day
 Yes I will fight!!!
 Just so tired.
 I think dr will put me on new drug mon.
 Got to see if there is a mutant.
 Prays and love to all.
 18's. emoji_u1f41f.png
 Jeanie


 Sent from my iPhone

 On Jan 10, 2015, at 4:31 AM, sherri swanson swanson.sherri...@gmail.com
 wrote:

Hi Richard,

 If it's one thing I got, It's Attitude! At least that's what my mom would
 tell me when I was a teenager. LOL

 Sorry to hear about

Re: [CMLHope] Night Sweats

[sherri swanson]

 that I had my BMT. It
 took many years for my kidneys to fail and that is probably why most
 transplant centers will usually not use total body radiation any more
 unless it is really needed.

 18's,

 Marty

 On Thu, Jan 8, 2015 at 1:31 PM, sherri swanson swanson@gmail.com
 wrote:

  Hi Marty,

 The doctors are trying to treat the different illnesses that are included
 in my condition. There are so many and they do so many different things,
 that I am happy just to to be here. I agree that as we get older there are
 some unusual things that that find us. But in the long run, we all got
 something. I'm a survivor. It's what I do. So when I found out on Monday
 that I have a large mass on my thyroid, I told my doctor I guess we're
 going to be busy this winter. At least I'm not an alarmist.

 I too have trouble with my kidneys. Not to the extend that you do, I'm
 working to keep myself at the current level of stage III Kidney Disease.
 Some days, I'm good others, not so much.  Lately I've not been doing so
 good and I've had to go and buy new shoes as my feet have been so swollen
 that my current size no longer fit. I wear compression socks all the time
 as well.

 My Nephrologist ran some blood work and found that my sodium was very low
 and and so was a bunch of other levels. Now, he is an alarmist. If I even
 look like I'm getting a cold he freaks out. I love him dearly, and I do
 what he says, but I can't sneeze without him making me go see my GP or the
 Oncologist or whatever doctor he thinks I need to see.

 I've heard that when you have a BMT and have to have radiation and chemo,
 sometimes kidney failure is possible. How long have you been on the list
 for transplant?

 Well, I'm glad that you are here and that you are strong. You're an
 inspiration to all of us. Thanks for all you do Marty.

 L'chaim

 Sherri

 On Thu, Jan 8, 2015 at 10:07 AM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Hi again Sherri,

 Hopefully you will be able to be treated for this condition. It seems
 that as most of us get older we start suffering from some very unusual
 things, but that is the price we must pay to remain alive. We just have to
 do whatever we can to keep on going because we have no other choice.

 My kidneys failed four years ago and I must be on dialysis because it is
 keeping me alive until I can hopefully receive a kidney transplant.

 This happened because when I received a bone marrow transplant more then
 25 years all of the radiation and chemotherapy started to destroy my
 kidneys, but i'm still alive today because of it. We all have our own
 battles in life and that is just the way it is.

 I wish you much health and happiness in this New Year.

 18's,

 Marty

 On Thu, Jan 8, 2015 at 5:19 AM, sherri swanson swanson@gmail.com
 wrote:

  Hi Marty,

 Happy New Year. I hope you are well. Thanks for the research I enjoyed
 article. I could only wish it was as simple as being as side effect of my
 TKI. In my case, nothing is ever simple LOL.  What I have is called
 Autonomic Neuropathy.  Basically, my Autonomic Nervous System has
 malfunctioned.  Here is a link for you to read if you would like to.

 http://en.wikipedia.org/wiki/Dysautonomia

 In a nutshell, Autonomic Neuropathy is a nerve disorder that affects
 involuntary body functions, including heart rate, blood pressure,
 perspiration and digestion.

 It isn't a specific disease. Autonomic Neuropathy refers to damage to the
 autonomic nerves. This damage disrupts signals between the brain and
 portions of the autonomic nervous system, such as the heart, blood vessels
 and sweat glands. This can cause decreased or abnormal performance of one
 or more involuntary body functions.

 Autonomic Neuropathy can be a complication of a number of diseases and
 conditions. And some medications can cause autonomic neuropathy as a side
 effect. Signs, symptoms and treatment of autonomic neuropathy vary
 depending on the cause, and on which nerves are affected.

 L'Chaim,

 Sherri




 On Wed, Jan 7, 2015 at 7:02 PM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Hi Sherri,

 I did a little research on your no sweating problem, and it is probably a
 side effect of your TKI treatment.

 I also ran across an article which you can read here. It does mention
 something about the lack of sweating. It probably has nothing to do with
 your problem but maybe you should read it anyway.

 http://en.wikipedia.org/wiki/Fabry_disease

 18's,

 Marty

 On Wed, Jan 7, 2015 at 5:29 AM, sherri swanson swanson@gmail.com
 wrote:

  Hello,

 I've had CML for 12 years and I've taken Gleevec for those 12 years. I've
 also experienced night sweats for many years.  At first I was told that it
 was due to menopause because of my age at the time. Go figure. When that
 was no longer an option, the only thing left was the Gleevec. Since being
 dx'd with the CML in 2003, I've been dx'd with other chronic illnesses that
 are just as serious.

 With these new illnesses came a new problem

Re: [CMLHope] Night Sweats

[sherri swanson]

Hi Richard,

If it's one thing I got, It's Attitude! At least that's what my mom would
tell me when I was a teenager. LOL

Sorry to hear about the car.  This cold weather can be brutal on a car's
battery. Glad you were able to get a new and now you’re good to go.

Uor wind chills have been bad too. And we have some open fields so there is
nothing to block that wind.  The other morning it was so cold that the
water froze in our community and none of had any water for awhile. It's a
good thing I'm an early raiser and I took my shower while we had water.

Currently, it is -7 with a wind chill of -25 where I live and it isn't
going to be above zero until 9 am. That's cold.

Stay warm Richard and think spring!

L'chaim,

Sherri

On Fri, Jan 9, 2015 at 11:29 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi Jeanie,

 So many things effect your kidneys. The simple ageing factor is just one
 of them. Some medicines will also contribute to kidney function probably
 some of these TKI's. Mine finally gave out from all of the chemotherapy and
 radiation I had more then 25 years ago.

 I can make a suggestion: If you are not diabetic try drinking cranberry
 juice. Not the ones that are mixed up with juices like grape juice. Ocean
 Spray has pure cranberry juice so you might want to try it. Even if you are
 diabetic they also make a light cranberry juice.

 You know what? You have been through so much that this is only a bump in
 the road for you, and so it is for me.

 We have two choices. One, continue to fight and the other is not an option
 for me or you.
 That is why I always end any of my posts with 18's. You just hang in there
 sweetie.

 Marty

 On Fri, Jan 9, 2015 at 7:55 AM, ICANDOALLTTC via CMLHope 
 cmlhope@googlegroups.com wrote:

  Hi Sherri,
 I think the tki's contribute to kidney disease.  I think that I am in the
 beginning of the disease and I have been on tki's for 11 years now.
 Hang in in there; blessings
 Jeanie3

  In a message dated 1/9/2015 3:21:09 A.M. Eastern Standard Time,
 swanson.sherri...@gmail.com writes:

  Hi Marty,

 Thanks for the prayers and right back at ya.

 I've been struggling with my kidney disease for many years and didn't
 know it, and then one day voilà the doctors found that there was a problem
 and that I'd been fighting it for years hence the diagnoses of Chronic
 Kidney Disease. And the funny thing is, I'm the only one in my entire
 family that has any of these diseases. My family had its share of health
 issues from heart disease to diabetes. But never anything like what I have.
 All my doctors just shake their heads. I tell them that I like to keep
 things interesting. And what they like is that I have a sense of humor. And
 at this point, it is much better to joke and laugh than to worry and cry.
 While I still take what I have seriously, I'm just happy to be here.

 I would be a lot happier if the weather here would warm up. For crying
 out loud it was -5 here yesterday and I was out in it. Now that is one
 hearty person or a very foolish one. The jury is still out on that one.
 Today it is going to be a balmy 8.  Woohoo! A heat wave. And, again I'll be
 out in it as I have to go and get a Rx that I need.

 L'chaim,

 Sherri

 On Thu, Jan 8, 2015 at 10:40 PM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Dear Sherri,

 Yes, you are a fighter and it takes one to know one. I pray that
 everything turns out well for you.

 And you are correct that all of the radiation and chemotherapy did
 destroy both of my kidneys. It has been over 25 years that I had my BMT. It
 took many years for my kidneys to fail and that is probably why most
 transplant centers will usually not use total body radiation any more
 unless it is really needed.

 18's,

 Marty

 On Thu, Jan 8, 2015 at 1:31 PM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

  Hi Marty,

 The doctors are trying to treat the different illnesses that are
 included in my condition. There are so many and they do so many different
 things, that I am happy just to to be here. I agree that as we get older
 there are some unusual things that that find us. But in the long run, we
 all got something. I'm a survivor. It's what I do. So when I found out on
 Monday that I have a large mass on my thyroid, I told my doctor I guess
 we're going to be busy this winter. At least I'm not an alarmist. [?]

 I too have trouble with my kidneys. Not to the extend that you do, I'm
 working to keep myself at the current level of stage III Kidney Disease.
 Some days, I'm good others, not so much.  Lately I've not been doing so
 good and I've had to go and buy new shoes as my feet have been so swollen
 that my current size no longer fit. I wear compression socks all the time
 as well.

 My Nephrologist ran some blood work and found that my sodium was very
 low and and so was a bunch of other levels. Now, he is an alarmist. If I
 even look like I'm getting a cold he freaks out. I love him dearly, and I
 do what he says, but I can't sneeze

Re: [CMLHope] Bad need

[sherri swanson]

Jeanie,

Hang in there! I'll say a prayer for you too.

L'chaim

Sherri

On Thu, Jan 8, 2015 at 10:33 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi Jeanie,

 You know that I am praying for you.

 18's times two for you.

 Marty

 On Thu, Jan 8, 2015 at 1:21 PM, 'Icandoallttc' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Just got back from Moffitt.  All counts were up and uremic acid was high.
 Dr took me off sprycel and put me on Hydrea, and other drugs.  Took
 another blood test for mutant.  Will know next week if mutant is problem.
 Pray for me and all in need.
 Jeanie[image: ]

 Sent from my iPhone

 On Jan 8, 2015, at 11:07 AM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi again Sherri,

 Hopefully you will be able to be treated for this condition. It seems
 that as most of us get older we start suffering from some very unusual
 things, but that is the price we must pay to remain alive. We just have to
 do whatever we can to keep on going because we have no other choice.

 My kidneys failed four years ago and I must be on dialysis because it is
 keeping me alive until I can hopefully receive a kidney transplant.

 This happened because when I received a bone marrow transplant more then
 25 years all of the radiation and chemotherapy started to destroy my
 kidneys, but i'm still alive today because of it. We all have our own
 battles in life and that is just the way it is.

 I wish you much health and happiness in this New Year.

 18's,

 Marty

 On Thu, Jan 8, 2015 at 5:19 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hi Marty,

 Happy New Year. I hope you are well. Thanks for the research I enjoyed
 article. I could only wish it was as simple as being as side effect of my
 TKI. In my case, nothing is ever simple LOL.  What I have is called
 Autonomic Neuropathy.  Basically, my Autonomic Nervous System has
 malfunctioned.  Here is a link for you to read if you would like to.

 http://en.wikipedia.org/wiki/Dysautonomia

 In a nutshell, Autonomic Neuropathy is a nerve disorder that affects
 involuntary body functions, including heart rate, blood pressure,
 perspiration and digestion.

 It isn't a specific disease. Autonomic Neuropathy refers to damage to
 the autonomic nerves. This damage disrupts signals between the brain and
 portions of the autonomic nervous system, such as the heart, blood vessels
 and sweat glands. This can cause decreased or abnormal performance of one
 or more involuntary body functions.

 Autonomic Neuropathy can be a complication of a number of diseases and
 conditions. And some medications can cause autonomic neuropathy as a side
 effect. Signs, symptoms and treatment of autonomic neuropathy vary
 depending on the cause, and on which nerves are affected.

 L'Chaim,

 Sherri




 On Wed, Jan 7, 2015 at 7:02 PM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Hi Sherri,

 I did a little research on your no sweating problem, and it is probably
 a side effect of your TKI treatment.

 I also ran across an article which you can read here. It does mention
 something about the lack of sweating. It probably has nothing to do with
 your problem but maybe you should read it anyway.

 http://en.wikipedia.org/wiki/Fabry_disease

 18's,

 Marty

 On Wed, Jan 7, 2015 at 5:29 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hello,

 I've had CML for 12 years and I've taken Gleevec for those 12 years.
 I've also experienced night sweats for many years.  At first I was told
 that it was due to menopause because of my age at the time. Go figure. 
 When
 that was no longer an option, the only thing left was the Gleevec. Since
 being dx'd with the CML in 2003, I've been dx'd with other chronic
 illnesses that are just as serious.

 With these new illnesses came a new problem. I no longer sweat at all.
 So now I have the complete opposite problem. No matter how hot it is, I
 never sweat. I a way, it's nice because I'm always cold and I long for 
 very
 hot days so I can go out side in the heat. But my oncologist has warned me
 to not do it for very long as I have no way to control my body
 temperature.  Unfortunately, it works the same way with the cold. My body
 temperature is a constant 95 degrees.

 So, in answer to your question, yes, the Gleevec does cause night
 sweats. It is one of its side effects. Unfortunately, I was not able to
 find a remedy for my night sweats other than going to the extreme which I
 do not recommend. 332.png

 I hope everyone has a good New Year and is healthy.  Keep my posted as
 to what you find out. Even thought I no long have this issue, I would 
 still
 like to be kept in the loop.

 L'chaim

 Sherri

 On Tue, Jan 6, 2015 at 4:19 PM, 'Marcie Goodman' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Hello, Susan. Gosh, we are just sweating through this it seems. I
 will see what may be available naturally, as I don't want hormones 
 either.
 Sorry you are experiencing this same problem which I hope to solve.

 Best wishes to you, Roy

Re: [CMLHope] Night Sweats

[sherri swanson]

Hi Marty,

Thanks for the prayers and right back at ya.

I've been struggling with my kidney disease for many years and didn't know
it, and then one day voilà the doctors found that there was a problem and
that I'd been fighting it for years hence the diagnoses of Chronic Kidney
Disease. And the funny thing is, I'm the only one in my entire family that
has any of these diseases. My family had its share of health issues from
heart disease to diabetes. But never anything like what I have. All my
doctors just shake their heads. I tell them that I like to keep things
interesting. And what they like is that I have a sense of humor. And at
this point, it is much better to joke and laugh than to worry and cry.
While I still take what I have seriously, I'm just happy to be here.

I would be a lot happier if the weather here would warm up. For crying out
loud it was -5 here yesterday and I was out in it. Now that is one hearty
person or a very foolish one. The jury is still out on that one.  Today it
is going to be a balmy 8.  Woohoo! A heat wave. And, again I'll be out in
it as I have to go and get a Rx that I need.

L'chaim,

Sherri

On Thu, Jan 8, 2015 at 10:40 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Dear Sherri,

 Yes, you are a fighter and it takes one to know one. I pray that
 everything turns out well for you.

 And you are correct that all of the radiation and chemotherapy did destroy
 both of my kidneys. It has been over 25 years that I had my BMT. It took
 many years for my kidneys to fail and that is probably why most transplant
 centers will usually not use total body radiation any more unless it is
 really needed.

 18's,

 Marty

 On Thu, Jan 8, 2015 at 1:31 PM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hi Marty,

 The doctors are trying to treat the different illnesses that are included
 in my condition. There are so many and they do so many different things,
 that I am happy just to to be here. I agree that as we get older there are
 some unusual things that that find us. But in the long run, we all got
 something. I'm a survivor. It's what I do. So when I found out on Monday
 that I have a large mass on my thyroid, I told my doctor I guess we're
 going to be busy this winter. At least I'm not an alarmist. [?]

 I too have trouble with my kidneys. Not to the extend that you do, I'm
 working to keep myself at the current level of stage III Kidney Disease.
 Some days, I'm good others, not so much.  Lately I've not been doing so
 good and I've had to go and buy new shoes as my feet have been so swollen
 that my current size no longer fit. I wear compression socks all the time
 as well.

 My Nephrologist ran some blood work and found that my sodium was very low
 and and so was a bunch of other levels. Now, he is an alarmist. If I even
 look like I'm getting a cold he freaks out. I love him dearly, and I do
 what he says, but I can't sneeze without him making me go see my GP or the
 Oncologist or whatever doctor he thinks I need to see.

 I've heard that when you have a BMT and have to have radiation and chemo,
 sometimes kidney failure is possible. How long have you been on the list
 for transplant?

 Well, I'm glad that you are here and that you are strong. You're an
 inspiration to all of us. Thanks for all you do Marty.

 L'chaim

 Sherri

 On Thu, Jan 8, 2015 at 10:07 AM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Hi again Sherri,

 Hopefully you will be able to be treated for this condition. It seems
 that as most of us get older we start suffering from some very unusual
 things, but that is the price we must pay to remain alive. We just have to
 do whatever we can to keep on going because we have no other choice.

 My kidneys failed four years ago and I must be on dialysis because it is
 keeping me alive until I can hopefully receive a kidney transplant.

 This happened because when I received a bone marrow transplant more then
 25 years all of the radiation and chemotherapy started to destroy my
 kidneys, but i'm still alive today because of it. We all have our own
 battles in life and that is just the way it is.

 I wish you much health and happiness in this New Year.

 18's,

 Marty

 On Thu, Jan 8, 2015 at 5:19 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hi Marty,

 Happy New Year. I hope you are well. Thanks for the research I enjoyed
 article. I could only wish it was as simple as being as side effect of my
 TKI. In my case, nothing is ever simple LOL.  What I have is called
 Autonomic Neuropathy.  Basically, my Autonomic Nervous System has
 malfunctioned.  Here is a link for you to read if you would like to.

 http://en.wikipedia.org/wiki/Dysautonomia

 In a nutshell, Autonomic Neuropathy is a nerve disorder that affects
 involuntary body functions, including heart rate, blood pressure,
 perspiration and digestion.

 It isn't a specific disease. Autonomic Neuropathy refers to damage to
 the autonomic nerves. This damage disrupts signals between the brain

Re: [CMLHope] Night Sweats

[sherri swanson]

Hi Marty,

The doctors are trying to treat the different illnesses that are included
in my condition. There are so many and they do so many different things,
that I am happy just to to be here. I agree that as we get older there are
some unusual things that that find us. But in the long run, we all got
something. I'm a survivor. It's what I do. So when I found out on Monday
that I have a large mass on my thyroid, I told my doctor I guess we're
going to be busy this winter. At least I'm not an alarmist. [?]

I too have trouble with my kidneys. Not to the extend that you do, I'm
working to keep myself at the current level of stage III Kidney Disease.
Some days, I'm good others, not so much.  Lately I've not been doing so
good and I've had to go and buy new shoes as my feet have been so swollen
that my current size no longer fit. I wear compression socks all the time
as well.

My Nephrologist ran some blood work and found that my sodium was very low
and and so was a bunch of other levels. Now, he is an alarmist. If I even
look like I'm getting a cold he freaks out. I love him dearly, and I do
what he says, but I can't sneeze without him making me go see my GP or the
Oncologist or whatever doctor he thinks I need to see.

I've heard that when you have a BMT and have to have radiation and chemo,
sometimes kidney failure is possible. How long have you been on the list
for transplant?

Well, I'm glad that you are here and that you are strong. You're an
inspiration to all of us. Thanks for all you do Marty.

L'chaim

Sherri

On Thu, Jan 8, 2015 at 10:07 AM, Marty Gartenberg wa2...@gmail.com wrote:

 Hi again Sherri,

 Hopefully you will be able to be treated for this condition. It seems that
 as most of us get older we start suffering from some very unusual things,
 but that is the price we must pay to remain alive. We just have to do
 whatever we can to keep on going because we have no other choice.

 My kidneys failed four years ago and I must be on dialysis because it is
 keeping me alive until I can hopefully receive a kidney transplant.

 This happened because when I received a bone marrow transplant more then
 25 years all of the radiation and chemotherapy started to destroy my
 kidneys, but i'm still alive today because of it. We all have our own
 battles in life and that is just the way it is.

 I wish you much health and happiness in this New Year.

 18's,

 Marty

 On Thu, Jan 8, 2015 at 5:19 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hi Marty,

 Happy New Year. I hope you are well. Thanks for the research I enjoyed
 article. I could only wish it was as simple as being as side effect of my
 TKI. In my case, nothing is ever simple LOL.  What I have is called
 Autonomic Neuropathy.  Basically, my Autonomic Nervous System has
 malfunctioned.  Here is a link for you to read if you would like to.

 http://en.wikipedia.org/wiki/Dysautonomia

 In a nutshell, Autonomic Neuropathy is a nerve disorder that affects
 involuntary body functions, including heart rate, blood pressure,
 perspiration and digestion.

 It isn't a specific disease. Autonomic Neuropathy refers to damage to the
 autonomic nerves. This damage disrupts signals between the brain and
 portions of the autonomic nervous system, such as the heart, blood vessels
 and sweat glands. This can cause decreased or abnormal performance of one
 or more involuntary body functions.

 Autonomic Neuropathy can be a complication of a number of diseases and
 conditions. And some medications can cause autonomic neuropathy as a side
 effect. Signs, symptoms and treatment of autonomic neuropathy vary
 depending on the cause, and on which nerves are affected.

 L'Chaim,

 Sherri




 On Wed, Jan 7, 2015 at 7:02 PM, Marty Gartenberg wa2...@gmail.com
 wrote:

 Hi Sherri,

 I did a little research on your no sweating problem, and it is probably
 a side effect of your TKI treatment.

 I also ran across an article which you can read here. It does mention
 something about the lack of sweating. It probably has nothing to do with
 your problem but maybe you should read it anyway.

 http://en.wikipedia.org/wiki/Fabry_disease

 18's,

 Marty

 On Wed, Jan 7, 2015 at 5:29 AM, sherri swanson 
 swanson.sherri...@gmail.com wrote:

 Hello,

 I've had CML for 12 years and I've taken Gleevec for those 12 years.
 I've also experienced night sweats for many years.  At first I was told
 that it was due to menopause because of my age at the time. Go figure. When
 that was no longer an option, the only thing left was the Gleevec. Since
 being dx'd with the CML in 2003, I've been dx'd with other chronic
 illnesses that are just as serious.

 With these new illnesses came a new problem. I no longer sweat at all.
 So now I have the complete opposite problem. No matter how hot it is, I
 never sweat. I a way, it's nice because I'm always cold and I long for very
 hot days so I can go out side in the heat. But my oncologist has warned me
 to not do it for very long as I have

Re: [CMLHope] Night Sweats

[sherri swanson]

Hello,

I've had CML for 12 years and I've taken Gleevec for those 12 years. I've
also experienced night sweats for many years.  At first I was told that it
was due to menopause because of my age at the time. Go figure. When that
was no longer an option, the only thing left was the Gleevec. Since being
dx'd with the CML in 2003, I've been dx'd with other chronic illnesses that
are just as serious.

With these new illnesses came a new problem. I no longer sweat at all. So
now I have the complete opposite problem. No matter how hot it is, I never
sweat. I a way, it's nice because I'm always cold and I long for very hot
days so I can go out side in the heat. But my oncologist has warned me to
not do it for very long as I have no way to control my body temperature.
Unfortunately, it works the same way with the cold. My body temperature is
a constant 95 degrees.

So, in answer to your question, yes, the Gleevec does cause night sweats.
It is one of its side effects. Unfortunately, I was not able to find a
remedy for my night sweats other than going to the extreme which I do not
recommend. [?]

I hope everyone has a good New Year and is healthy.  Keep my posted as to
what you find out. Even thought I no long have this issue, I would still
like to be kept in the loop.

L'chaim

Sherri

On Tue, Jan 6, 2015 at 4:19 PM, 'Marcie Goodman' via CMLHope 
cmlhope@googlegroups.com wrote:

 Hello, Susan. Gosh, we are just sweating through this it seems. I will see
 what may be available naturally, as I don't want hormones either. Sorry you
 are experiencing this same problem which I hope to solve.

 Best wishes to you, Roy and your beautiful family for a blessed New Year.

 Marcie

 Sent from my iPad

 On Jan 5, 2015, at 10:17 PM, 'Susan Zimmerman' via CMLHope 
 cmlhope@googlegroups.com wrote:

 Dear Marcie,

  I have had night sweats for years, intensifying after my dx in 2005.  I
 have day sweats, too.  When I stand up for more than five minutes to do
 anything at all I start profusely sweating from weakness.  I think part of
 this is from the bosulif, but most is from the stroke weakness and need for
 hormones.  I will not take artificial hormones and have not gotten the good
 kind that are specially made for each person.  I totally sympathize with
 you Marcie.  You might want to go to a naturalist doctor about getting a
 test for hormones and then they will make a compound for you of cream that
 usually works.  Regular md's only know to prescribe the synthetic or horse
 hormones which do cause cancer.  That's my take on it, hope you find some
 relief!!!

 Thanks for your always uplifting posts!  Happy New Year to you, too!
 Susan F. Zimmerman


 -Original Message-
 From: 'Marcie Goodman' via CMLHope cmlhope@googlegroups.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Mon, Jan 5, 2015 8:41 am
 Subject: [CMLHope] Night Sweats

  Happy New Year, dear friends. I'm wondering if any of you suffer with night
 sweats as a side effect of your TKI.  I do, and have, over the years of my
 treatment. I don't know that it is happening more frequently but the sweats 
 seem
 to be more intense. Is there anything that you know of that will help?

 Many thanks for always being there to offer encouragement and assistance.

 Marcie

 Sent from my iPad

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Re: [CMLHope] My surgery is over

[sherri swanson]

Marty,

L'shana tova to you and all who celebrate the new year. I hope you get the
transplant very soon. I will continue to pray for you everyday my friend.

I agree with you Marty that someday we will see a cure for CML. The
reference you make to polio hits close to home for me as my husband had
polio as child and is now dealing with PPS (Post Polio Syndrome). So, even
though it was wiped out so many years ago, it is still in front and center
in our lives today.

Thank you for all you do it means a lot.


L'chaim!

Sherri



On Thu, Sep 25, 2014 at 6:01 PM, Marty Gartenberg wa2...@gmail.com wrote:

 Dear Beth,

 You will see there will be a cure for CML soon. If you think about it when
 Gleevec first came out it was able to save many lives because of all the
 research these doctors were doing on it, mainly Dr. Brian Druker. The same
 will also come with a cure.

 Just look at what happened to Polio. It was a dreaded disease that you
 don't hear about anymore because of a simple vaccine made by Dr. Salk. Same
 for many other diseases. Once dreaded and now most people don't seem to
 give them a thought.

 18's,

 Marty

 On Thu, Sep 25, 2014 at 1:31 PM, bkbarney via CMLHope 
 cmlhope@googlegroups.com wrote:

 Dear Marty,

 Lashana tova to you and everyone here who celebrates this holiday.. Ditto
 on what Marty said. wishing everyone a healthy, peaceful happy year ahead.
 Heres to a cure soon for everyone.

 fondly, Beth.


  -Original Message-
 From: Marty Gartenberg wa2...@gmail.com
 To: CMLHope CMLHope@googlegroups.com
 Sent: Wed, Sep 24, 2014 3:45 pm
 Subject: [CMLHope] My surgery is over

 I want to thank everyone for their good wishes and prayers. I know
 that all of you really helped me out.

 I received something from Marcie and in it she wrote L'shana tova tikateivu
 It simply means have a good New Year.

 Marcie, I'm sure that you won't mind if I spread this onto everyone.
 It doesn't matter what religion you are but it does matter that each
 and every one of you has a very healthy and happy new year. This is
 from me to everyone. I pray that there will be a cure for CML and with
 it all of you may be healed. After what all of you have been going
 through you really deserve all healing health. With health comes
 happiness.

 I love each and every one of you. Your always in my heart and mind. I
 often think about you and at times I just can't sleep at night, but
 please know that THERE WILL BE A CURE!!!

 18's,

 Marty

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Re: [CMLHope] Explanation of PCRU

[sherri swanson]

Hi Jeanie,

Ive, had many EDG's and never had any problems. As for the colonoscopy, I
agree with Greenie, the prep is the worst part of the procedure. Drinking
that gallon of liquid is a real downer.  I start my drink at like 2 p.m. so
I can take a little longer to drink it than what the directions say.  Hope
that helps and that everything goes well for you.

Sherri



On Sun, Sep 29, 2013 at 3:56 PM, myvet...@aol.com wrote:

 **
 Hi Jeanie, about the colonoscopy and the edoscopy.  I had both about 4
 years ago and the bad part is the gallon of fluid you have to drink the
 night before.  I won't good into detail.  That was the bad part for me
 put they put me in la la land I when they woke up I didn't feel or remember
 a thing of course everyone is different put I wouldn't worry about having
 it done.

 Hang in their,

 greenie

  In a message dated 9/29/2013 2:45:28 P.M. Eastern Daylight Time,
 icandoall...@aol.com writes:



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Re: [CMLHope] Re: insurance coverage

[sherri swanson]

Hello,

I have Anthem and use them for my drugs all the time. I take Gleevec 600mg
everyday. My out of pocket for the 400mg for 3 months $150.00. So, it's a
little higher than what you're paying now per month.  I've been with Anthem
for about 6 years and have had no issues with getting the Gleevec. I use a
mail order pharmacy and it works out great. Let me know if you have any
questions. I'd be happy to answer them.
Hope you're well.

Sherri


On Thu, Sep 26, 2013 at 2:45 PM, cynthia.lore...@gmail.com wrote:

 I am currently cover by blue cross blue shield Anthem, and my co-pay is
 100.00 per month. It is my husband's company policy so that may be
 different than other Anthem policies. They use Prime Therapeutics for the
 prescription part of our coverage.  I am trying to find someone who knows
 anything about the best Medicare part d coverage for Gleevec as my husband
 is retiring. I was told that the retail price for gleevec is now $7,200.00
 per month for 400mg. daily. There are so many plans out there it is
 difficult to sort through them for price comparrisons

 On Friday, May 3, 2013 12:52:27 PM UTC-4, LARRY H. wrote:

 Hello group I have a question .  my current insurance is  united health
 care it cost 35.00 a month for gleevec   .  my company is thinking of
 switching to anthem blue cross  , I know there are different plans but is
 anyone on gleevec using anthem , does it cover the gleevec  ???  just
 trying to be prepared .



 Larry

 Lex  , ky



 God bless all the warriors .

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Re: [CMLHope] Side effects

[sherri swanson]

Hey Greenie,
I Have to agree that it depends on what I eat if I get nauseous or not with
my Gleevec. I know I can not eat soup and take the Gleevec as that will
cause me to throw up for sure. But, if I eat some bread with it I'm okay.
For a while I could not eat pizza at all as I was so nauseous that I could
not stand it. So, I've given up pizza. And being from Chicago, that was
hard. But, it comes and goes. I find that if I eat enough food I'm okay.
Hope this helps. Good luck with t he doctor and keep us posted.
Sherri

On Mon, Mar 12, 2012 at 11:29 AM, myvet...@aol.com wrote:

 **
 Thank everyone for you feed back.  dg

  In a message dated 3/12/2012 8:02:37 A.M. Eastern Daylight Time,
 icandoall...@aol.com writes:

 Hi I found that eating a big breakfast with my Gleevec kept my nausea
 down.  Never eat it with spicy foods etc.  Keep the meal you take  you
 Gleevec with large and mild.
 Good luck,
 Jeanie3

  In a message dated 3/12/2012 7:50:31 A.M. Eastern Daylight Time,
 myvet...@aol.com writes:

 Hi Marcie,  We moved here for good last November.  The answer to your
 question is yes.  If the guy upstairs said's it's O.K. and I hoping he
 agrees. dg

  In a message dated 3/11/2012 10:36:11 P.M. Eastern Daylight Time,
 margoo...@aol.com writes:

 Hi Greenie:

 I suffer from nausea on Gleevec only when I don't have enough food in my
 stomach. I try to take 600 mg with or following dinner. Had anxiety attacks
 when first diagnosed 3 years ago but they have been gone for awhile. Severe
 nausea will make anyone anxious.

 Good luck at the doctor and let us know how it turns out. By the way, my
 husband and I may be in Ft Myers in May. Will you still be there?

 Marcie
 Baltimore

 Sent from my iPhone

 On Mar 11, 2012, at 1:09 PM, myvet...@aol.com wrote:

   Thanks for the your email.dg

  In a message dated 3/11/2012 12:54:18 P.M. Eastern Daylight Time,
 nyc...@hotmail.com writes:

 *
 *I have been on Gleevec for 10 yrs and once in a while I start feeling
 Nausea. It comes and goes.

  --
 From: myvet...@aol.commyvet...@aol.com
 Date: Sun, 11 Mar 2012 11:56:04 -0400
 Subject: [CMLHope] Side effects
 To: cmlhope@googlegroups.comcmlhope@googlegroups.com

 Hi group, Question, for the last few days I have been getting nausea which
 leads to and anxiety attacks.  I've had this problem before back in 2006
 when I was living in Springfield, MO.  I was putting a deck on the back of
 our house and the heat was 98 deg. and heat index was 114.  I ended up with
 a heat exhaustion.  Then anxiety along with nausea.  The nausea went on for
 over 2 years and I would complain to my Doctor in Chicago and they would
 say you have been on Gleevec for over 5 years theirs no way you can have
 problems with nausea now.

 Some members of our group sent me emails that the same thing happened to
 them.  One day I woke up and the nausea just stopped and never came back,
 put I still have the anxiety problem to this day.

 Well the last few days it has hit me again for no reason.  I have and
 appointment with and Oncologist the 20nd of this month.  I think I'm going
 to take a two week vacation from Gleevec and see if things improve.

 If anyone else has had this problem before please let me know.

 Thanks,

 greenie

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Re: [CMLHope] My latest test results!

[sherri swanson]

That is great news! I'm still waiting on my results. I hate waiting.

On Wed, Feb 8, 2012 at 8:08 AM, margoo...@aol.com wrote:

 Congratulations!  That is wonderful news and inspirational for those of us
 still on Gleevec.  Keep up the good work.

 Marcie
 Baltimore


  -Original Message-
 From: Suzieq sheila.a.wat...@gmail.com
 To: CMLHope cmlhope@googlegroups.com
 Sent: Tue, Feb 7, 2012 6:37 pm
 Subject: [CMLHope] My latest test results!

 Finally,  after almost 2 months and having to redo the BCR-ABL,  I got
 the results yesterday.  I'm still at not detected..Yippee!!!
 That makes it 4 in a row since 2/25/'10 (2 yrs.).  And, yesterday, the
 6th of February was my 8 year anniversary of being dx'ed with CML.
 I'm still alive and kicking thanks to Gleevec! AMEN!!!

 Suzieq

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Re: [CMLHope] Eye Bleeds

[sherri swanson]

Okay, I have a silly question. Every once in awhile I wake up with my right
or left eye in the corner all blood shot. It looks terrible and like I've
been in a fight. It does not hurt or itch and usually goes away in a few
days. Is this what you are calling  eye bleeds?

Thanks

On Mon, May 9, 2011 at 7:58 AM, Susan Zimmerman rszim0...@aol.com wrote:

 I was on gleevec and had numerous eye bleeds until I actually did have a
 brain bleed.  This is nothing to sneeze at.  I was then removed from gleevec
 and have been off it for 4 years.  One year ago I had another stroke much
 worse, and am thankful to be here.  Going against doc's orders to try
 sprycel until I am out of cellular remission.  I pray that never happens.
  Thankful for every day.  Take these eye bleeds seriously!  Discuss these
 two posts regarding brain bleeds with your doctors.
 Blessings,
 Susan




 -Original Message-
 From: maggy...@bellsouth.net maggy...@bellsouth.net
 To: cmlhope cmlhope@googlegroups.com
 Sent: Mon, May 9, 2011 3:41 am
 Subject: Re: [CMLHope] Eye Bleeds

  I was on Gleevac when one day I woke up with bilateral eye bleeds.   I
 was immediately removed from the Gleevac.   If Gleevac can make your eyes
 bleed it's potentially possible for it to make your brain bleeed - and to
 cause a stroke.   I've not been on any medication for CML for over 1.5 years
 now.   This week I may be restarted on a lower dose of Gleevac per my
 hematologist.  We will see.

  --
 *From:* judy jam_92...@yahoo.com
 *To:* cmlhope@googlegroups.com
 *Cc:* jam_92...@yahoo.com
 *Sent:* Sun, May 8, 2011 11:34:39 PM
 *Subject:* Re: [CMLHope] Eye Bleeds

  Hello Marcie  they scared me also but I'we had about 6 or 8 or them and
 they go right away  no need to worry  some are bigger than others but I
 don't think their a big deal except all the red.  Take care JUDY

  --
 *From:* Marcie margoo...@aol.com
 *To:* cmlhope@googlegroups.com
 *Sent:* Mon, May 9, 2011 12:38:35 AM
 *Subject:* [CMLHope] Eye Bleeds

 I've been on Gleevec since March '09, should let Zavie know that I can be
 his newest member of the zero club. But tonight I got an eye bleed. Doesn't
 hurt but looks awful. Anyone have any info on what to expect?

 Thanks, dear friends. Even my wonderful doctor says every now and then go
 check with your group.

 Marcie in Baltimore
 Sent from my iPhone

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Re: [CMLHope] Re: New to the group

[sherri swanson]

Sheila,

I use to take long rides. We would be gone for 8 hours or more. I really
miss that. My husband took his bike out yesterday for the first time this
year. When I saw him ride off, I was in envy of him. But then I got back in
the house and started doing other things and forgot all about it. LOL

On Thu, May 5, 2011 at 12:58 AM, Suzieq sheila.a.wat...@gmail.com wrote:

 Sherri:  I don't get to ride with him very often.just around
 here mostly.  We have been planning a trip with another couple,  but
 not a very long trip as some take.  :):)  I don't think my back could
 handle it. :)

 Suzieq

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 5 Messages in 1 Topic

[sherri swanson]

Hi Sue,

So glad to know that I have a book-end!
You have described me to a tee. I am cold a summer and wear long sleeves and
a light sweater. I never wear shorts or open toe shoes as my feet are like
ice cubes. In the summer I have a blanket on and the ceiling fan going for
my husband.

I do drink a lot of water and that does help some with the sweats.

Sherri

On Fri, Apr 22, 2011 at 9:44 AM, Sue hol...@iinet.net.au wrote:

  Hi Sherri,

 I am your book-end

 I also have night sweats - have had a hysterectomy - and past menopause.
 I am cold often in Summer and like others feel the cold terribly thru to
 the bones.
 Wear light pullovers or shrugs in summer.
 I also have all rugs on while sleeping in summer, so you are not alone in
 your issue.

 Hope you are feeling better.

 Suggestion - drink alot of wate and as the sweats hit you, just put a foot
 out of the covers
 for a few seconds, seems to stop the sweats for the rest of the night

 Sue

 - Original Message -
 *From:* cmlhope+nore...@googlegroups.com
 *To:* Digest Recipients cmlhope+dig...@googlegroups.com
 *Sent:* Friday, April 22, 2011 6:37 PM
 *Subject:* [CMLHope] Digest for cmlhope@googlegroups.com - 5 Messages in 1
 Topic

   Today's Topic Summary

 Group: http://groups.google.com/group/cmlhope/topics

- New to the group #12fb1a0026dd006e_group_thread_0 [5 Updates]

  Topic: New to the 
 grouphttp://groups.google.com/group/cmlhope/t/4fd2fc263cfb99d2

sherri swanson.sherri...@gmail.com Apr 20 01:18PM -0700 
 ^#12fb1a0026dd006e_digest_top

Hello everyone!

I was dx with CML in 2003 and am on 600 mg Gleevec once a day. I have
had all of the ugly side effects from bone pain to rash. But I have
stuck it out. Now I am going through night sweats. At first I thought
it was menopause, but I'm not having any hot flashes and when the
sweats come, I'm so cold. Has anyone else had this problem? This is a
new side effect for me and I'm hoping that someone else has had it.

Thanks.




bkbar...@aol.com Apr 21 01:12PM -0400 ^ #12fb1a0026dd006e_digest_top

While have not had them myself, I am aware that night sweats are a
known
side effect for some people on the Kinase inhibitors. You are
definately not
the only one to experience it. Perimenapause can be another culprit,
but the
cold feeling...Ikno others have reported here as well..Hope it helps
you to
know that you are not alone, fellow warrior...Beth




margoo...@aol.com Apr 21 02:18PM -0400 ^ #12fb1a0026dd006e_digest_top

I was dx in March '09, started 400 mg Gleevec, bumped up to 600 mg in
spring of '10. I started with horrible night sweats in the last two months
and I am well past menopause, age 59. I also get terrible chills. My 
 hem/onc
says it is a side effect that other patients have complained about and 
 there
doesn't seem to be much that can be done to alleviate the problem. I have
the sweats so bad that my sheets are often soaked. Hang in there, Sherri,
I'm right there with you!

Marcie
Baltimore






-Original Message-
From: sherri swanson.sherri...@gmail.com
To: CMLHope cmlhope@googlegroups.com
Sent: Thu, Apr 21, 2011 9:08 am
Subject: [CMLHope] New to the group


Hello everyone!
I was dx with CML in 2003 and am on 600 mg Gleevec once a day. I have
ad all of the ugly side effects from bone pain to rash. But I have
tuck it out. Now I am going through night sweats. At first I thought
t was menopause, but I'm not having any hot flashes and when the
weats come, I'm so cold. Has anyone else had this problem? This is a
ew side effect for me and I'm hoping that someone else has had it.
Thanks.
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sion...@aol.com Apr 21 07:05PM ^ #12fb1a0026dd006e_digest_top

Had the night sweats with the chills. It sucks. Shivering and sweating.
It's like my thermometer is broken. Sometimes it's a face flushing red and
chills. Sometimes face flush and hot... It's wacky!
Sent via BlackBerry by ATT

-Original Message-
From: bkbar...@aol.com
Sender: cmlhope@googlegroups.com
Date: Thu, 21 Apr 2011 13:12:38
To: cmlhope@googlegroups.com
Reply-To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] New to the group

While have not had them myself, I am aware that night sweats are a
known
side effect for some people on the Kinase inhibitors. You are
definately not
the only one to experience it. Perimenapause can be 

Re: [CMLHope] Re: New to the group

[sherri swanson]

Hi Laura,

I sleep in an extra large men's tee shirt and it works great. I had long
bone pain when I first stated with the Gleevec back in 2003, but now I have
pain in the Hip joint and don't know if it is related to the Gleevec or not.
But I got through the bone pain in 2003 and the other side effects that I
had. Gleevec is a God send.

Sherri

On Sun, Apr 24, 2011 at 6:00 AM, LMD lm...@mac.com wrote:

 I have the same problem!  I found the best thing to sleep in for me is
 100% cotton dress-type men's shirts.  I like the thinner, smooth
 cotton.  I buy them extra big, roll up the sleeves and I am good to
 go!  They are so cool and comfortable.

 I also have intermittent bone pain with Gleevec, but it is a small
 price to pay for the results!  Pain meds help me when I need them.

 Good luck!
 Laura

 On Apr 22, 2:27 pm, Suzieq sheila.a.wat...@gmail.com wrote:
  Welcome to our group, Sherri.  I'm on 400 mgs. of Gleevec and have
  been since 'Feb. 04.
  Yes, I'm having the night sweatsjust went on a search for 100%
  cotton stuff to sleep in
  thinking that might help.  Had to settle for some shorts and t-
  shirt. :):)  But the nylon stuff is the
  worst  I find myself dripping in sweat in the middle of the night.
  Not so much chills anymore,  but
  I did have those early on.  This is just one more thing we with CML 
  Gleevec must deal with.
 
  I haven't had the rash so to speak,  but have a place here and there
  that constantly itches. Usually a place
  about 3 or 4 inches and there isn't anything showing like a rash,
  just itches.  I use Monkey Butt powder and that
  seems to help. LOL!!!   I do have the bone and joint pain
  constant..I take Advil Liquid Gels and mild dose of
  Oxycodone when too bad to tolerate.
 
  Hang in there and keep looking up,
  Suzieq

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Re: [CMLHope] New to the group

[sherri swanson]

I can understand how you could love that vette. And of course your wife was
right! We are always right! LOL. That gas mileage is great for a car that
takes 93 octane. I drive a Rav4 and it gets about 30mpg in the city on
regular. And you are correct, you can always replace the car, you can never
replace a life. It was good choice hitting the tree and not the woman. I'm
sure you didn't like the looks of the car when you saw it, but it was the
right thing to do.  My plate on my bike was Mosey 1 cause that was what I
did. I would mosey. I was never in a hurry to get any where.  We always took
the back roads in Wisconsin and they have twisty turny  roads that we would
ride on. I thought about transferring my bike plate to my car but my husband
thought it would be a hassle and in my car I do not mosey. So I let the
plate go when I let the bike bike go. Now I just have a regular old plate on
the car.

SS

On Fri, Apr 29, 2011 at 7:13 PM, myvet...@aol.com wrote:

  I was 14 years old when I received my first ride in a Corvette, it was a
 1953.   Love at first site.  I knew at one point I would have to have one.
 In fact my Indiana plate for many years was  (1st LUV).  When we moved to
 Springfield, MO. someone had that plate so for the 4 years that we lived
 their I had 1st LOVE.  After moving back to Indiana in 2009 I just got a
 plain Indiana plate.  I was getting to many comments about the plate that I
 loved my vette more then my wife.  Grace really didn't care what plate I
 had.  She said, it's your money spend it anyway you want.  She was right
 (again).  So from 1961 to present I had 10 Corvette's, I have met guys and
 women that have had as many as 30 Corvettes.  To rich for my blood.  But
 they have been a good car for me.  My 1973 saved my life when someone pulled
 out in front of me when I was driving about 40 mph in the rain and at
 night.  I didn't want to hit her so I pulled on the wheel to the left and
 ran right into a tree.  As for the Corvette, it was a total loss, but she
 was O.K. that's all that I cared about.  You can always buy another car.
 But this one get's great gas mileage, at 70 mph I get around 33 to 34 mpg
 and around town I get between 23 to 25.  Bad thing is it runs on 93
 octane.   Well, that's it my hole life story.  Fast bikes, Fast cars and
 Fast Women. (smile)

 dg



  In a message dated 4/29/2011 4:50:13 P.M. Eastern Daylight Time,
 swanson.sherri...@gmail.com writes:

 My brother always had Vette's. He would buy a new one seems like every
 year. Then he moved up to Mercedes Bends. I miss miss my brother. He passed
 away this past June. He was only 66. He was always buying a new car.  I had
 a Vulcan 750. That was my first bike. Best bike I ever rode. It was my
 learning bike. My husband used to take to the college parking lot for me so
 I could ride around and learn what I was doing before I took the MSF
 course.My husband basically taught me how to ride. At one time, we had 7
 motorcycles in the garage. My husband use to say I never sat on a bike I
 didn't like. LOL  Sounds like you love your Vette as much as I love
 motorcycle.

 SS

 On Fri, Apr 29, 2011 at 3:39 PM, myvet...@aol.com wrote:

  Well let's see,  two Honda 1100 cc V65's, 1200 cc VMax, last was a
 Vulcan 750.  All were nice but the Vmax was a little to much power on 2
 wheels.  Almost like driving the vette.  When I found out that I had cancer
 and at that time their was no Gleevec and they would not do a BM on me
 because of my age.  I figured what the hell time to buy another vette.  I
 picked it up on Dec. 9th 1999 at Bowling Green, KY.  It's a 2000, 6 speed
 conv. with over 400 h.p. and it's Loud.   I was 23 years old when I
 purchased my first one back in 1961, and of course their were others.  Wish
 I still had some of the older's one's.  I would be a rich man now.

 dg

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Re: [CMLHope] Re: New to the group

[sherri swanson]

Hey Suzieq,

Nothing wrong with Harley's or riding on the back. My favorite Harley is a
Fat Boy. I just love the way those look. I like that solid wheel. And the
fact that I am short, that is the only bike that fits me. :)  Do you guys do
much riding?

SS

On Sat, Apr 30, 2011 at 11:20 AM, Suzieq sheila.a.wat...@gmail.com wrote:

 Greenie  Sherri:  I'm not giving up my Harley rides with
 hubby

 Suzieq

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Re: [CMLHope] New to the group

[sherri swanson]

Sounds like you have a great thing going on. No grass cutting to worry
about. And a place for the Vette. Who could ask for more!  I would be in the
pool every chance I got. My dad, rest his soul, use to say I was a fish.
Every time I saw water I would try to swim in it. When I was in school, I
was on the swim team. You just can't get me out of the water. lol  We still
have a house and every week we are out cutting the lawn. We have a riding
mower so I guess that is not to bad. And of course we have a garage for the
motorcycle. Right now we only have the one bike as I had to sell mine as I
could not ride anymore.  When the spring comes and the weather gets warms, I
really miss it.

It must be nice to run into people that you know in town or at your home
away from home (Bass Pro).  Every once in awhile I will run into people that
I worked with. I will be in the store or some place and the will come up to
me and they haven't seen me in years. It's nice to be remembered.

The oldest daughter really likes working at Dury Lane and working on all the
plays. She keeps inviting us down there to see plays. The last one was
Spamalot but my husband was sick and we could not attend. Maybe next time.

On Thu, Apr 28, 2011 at 5:16 PM, myvet...@aol.com wrote:

  Never been their.  Of course never say never, maybe someday.  My daughter
 lost her mother in a car accident at the age of 8.  Her mothers name was
 Cheri.  So I was a mom and a dad for many years.  Couldn't find any women to
 marry me. (smile) Her husband quit his job at the age of 36 and retired.
 Made a lot of money, long story.  But we talk a lot on the phone.  Maybe one
 of these days she will send Grace and I plane tickets for my birthday and
 off we go.

 We live in an apartment complex, no more houses, town homes, condo's, etc.
 bin their done that.  It's nice here, first floor with the lake about 30 ft
 from our door.  Two swimming pools, tennis, health club, etc. and they keep
 the grounds very well maintained.  Plus I have a garage for the Vette.  The
 girl that runs the office lived in Valpo, IN. and her dad worked in the same
 plant that I worked at.  Small world, in fact we were eating lunch at Ruby
 Tuesday's one day and on our way out my ex supervisor walked in with his
 wife.  What a surprise, they live down the street from us.  You never know
 who your going to run into here.  Last week  when I was at Bass Pro I ran
 into Roland Martin the bass fisherman on T. V. outside in the parking lot.
 He was on his way to the Bass Pro shop in Springfield, MO. where we lived
 3.2 miles from their.  That was my second home.

 Well, we have an extra bedroom, and bath, the rent is cheap. (smile)

 p.s. been to Dury Lane Theater many years ago.

 greenie

  In a message dated 4/28/2011 2:31:53 P.M. Eastern Daylight Time,
 swanson.sherri...@gmail.com writes:

 Dr. Altman is the who I see when I need to go to Northwestern. Looks like
 we have something in common besides CML.
 Both of my husbands daughters live in Chicago. The oldest works at Dury
 Lane Theater in the production department. She oversees all the plays that
 they do. And the youngest one is in school for massage therapy. She will
 graduate in June and hope to work in a chiropractors office. We see them on
 occasion but not as much as we would like. But they have their own lives.
 But a t least they are in the same state. The youngest one was in the US
 Marine Corp for 4 years and travel all over. So we did not see her a while.

 Sounds like the kids have a nice place to visit to get away from the cold
 and the seafood isn't bad either. We may need to take you up on that offer
 when the weather get ugly here in Chicago this winter. Hawaii is a nice
 place to visit too. Do you go there much?

 Stay well,

 Sherri

 On Wed, Apr 27, 2011 at 3:46 PM, myvet...@aol.com wrote:

  Dr. Tallman was my Doctor, he was the one who enrolled me in their first
 study back in Feb of 2000.  My new Doctor is Jessica K. Altman.  My son will
 be picking me up at the airport.  My son Derek is a store mgr. for Sprint
 and puts in a lot of hours.   But he plans to visit us with his girlfriend
 this coming winter.   My son lives in Chicago and my daughter has a home in
 Buffalo, WY. witch is for sale and they own a condo in Lihue, HI.  Susan
 didn't ask me if it was O.K. for her to move to Lihue, HI, knowing that I
 wouldn't get to see my grand daughter that much, she is 5 years old.
  Grace's oldest son lives at our place in Porter, her middle son lives in
 Portage and has 2 girls 9 and 12 and the youngest son lives at Virginia
 Beach and has two boys 5 and 7.  Her youngest son is coming to visit us the
 first week in June.  We have lots of plans for the kids to do.

 But like I told her at our age she's young at 59 and I'm old at 71.  It's
 time that we do our thing.  Our kids live where they want to live and they
 didn't ask us how we felt when they those to move apart.  This way when the
 weather gets bad and they want 

Re: [CMLHope] New to the group

[sherri swanson]

People here don't see them either. That is their favorite saying when an
accident happens. Oh, I didn't see you. I never understood that. When I was
riding, I always made myself as visible as I could. I wore bright colors and
such.  My oncologist and neurologist both told me to give up riding. It took
me awhile, but I sold the bike. I had a 1500cc Vulcan Classic. It was a
sweet ride. What kind of bike did you have? I would agree that you have the
perfect weather down there for riding. And could ride year round.

SS

On Fri, Apr 29, 2011 at 1:28 PM, myvet...@aol.com wrote:

  One last item.  I had a motorcycle also but Dr. Tallman and my wife
 ganged up on me and told me to sell it.  If something would happen to me
 while riding it I could be in big trouble, bleeding out before help
 arrived.  So it's went by, by.  I due miss it.  It would be perfect down
 here but they have a lot of accidents on them here.  People just don't see
 them.

 dg

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Re: [CMLHope] New to the group

[sherri swanson]

My brother always had Vette's. He would buy a new one seems like every year.
Then he moved up to Mercedes Bends. I miss miss my brother. He passed away
this past June. He was only 66. He was always buying a new car.  I had a
Vulcan 750. That was my first bike. Best bike I ever rode. It was my
learning bike. My husband used to take to the college parking lot for me so
I could ride around and learn what I was doing before I took the MSF
course.My husband basically taught me how to ride. At one time, we had 7
motorcycles in the garage. My husband use to say I never sat on a bike I
didn't like. LOL  Sounds like you love your Vette as much as I love
motorcycle.

SS

On Fri, Apr 29, 2011 at 3:39 PM, myvet...@aol.com wrote:

  Well let's see,  two Honda 1100 cc V65's, 1200 cc VMax, last was a Vulcan
 750.  All were nice but the Vmax was a little to much power on 2
 wheels.  Almost like driving the vette.  When I found out that I had cancer
 and at that time their was no Gleevec and they would not do a BM on me
 because of my age.  I figured what the hell time to buy another vette.  I
 picked it up on Dec. 9th 1999 at Bowling Green, KY.  It's a 2000, 6 speed
 conv. with over 400 h.p. and it's Loud.   I was 23 years old when I
 purchased my first one back in 1961, and of course their were others.  Wish
 I still had some of the older's one's.  I would be a rich man now.

 dg

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Re: [CMLHope] New to the group

[sherri swanson]

Dr. Altman is the who I see when I need to go to Northwestern. Looks like we
have something in common besides CML.
Both of my husbands daughters live in Chicago. The oldest works at Dury Lane
Theater in the production department. She oversees all the plays that they
do. And the youngest one is in school for massage therapy. She will graduate
in June and hope to work in a chiropractors office. We see them on occasion
but not as much as we would like. But they have their own lives. But a t
least they are in the same state. The youngest one was in the US Marine Corp
for 4 years and travel all over. So we did not see her a while.

Sounds like the kids have a nice place to visit to get away from the cold
and the seafood isn't bad either. We may need to take you up on that offer
when the weather get ugly here in Chicago this winter. Hawaii is a nice
place to visit too. Do you go there much?

Stay well,

Sherri

On Wed, Apr 27, 2011 at 3:46 PM, myvet...@aol.com wrote:

  Dr. Tallman was my Doctor, he was the one who enrolled me in their first
 study back in Feb of 2000.  My new Doctor is Jessica K. Altman.  My son will
 be picking me up at the airport.  My son Derek is a store mgr. for Sprint
 and puts in a lot of hours.   But he plans to visit us with his girlfriend
 this coming winter.   My son lives in Chicago and my daughter has a home in
 Buffalo, WY. witch is for sale and they own a condo in Lihue, HI.  Susan
 didn't ask me if it was O.K. for her to move to Lihue, HI, knowing that I
 wouldn't get to see my grand daughter that much, she is 5 years old.
  Grace's oldest son lives at our place in Porter, her middle son lives in
 Portage and has 2 girls 9 and 12 and the youngest son lives at Virginia
 Beach and has two boys 5 and 7.  Her youngest son is coming to visit us the
 first week in June.  We have lots of plans for the kids to do.

 But like I told her at our age she's young at 59 and I'm old at 71.  It's
 time that we do our thing.  Our kids live where they want to live and they
 didn't ask us how we felt when they those to move apart.  This way when the
 weather gets bad and they want a place to visit where it's warm and the gulf
 is so close, we have extra room for family.   But my daughter lives where
 everybody wants to visit at some point.  You got to take care of us, I
 always say the hour glass is running low on sand.  I can't see living in
 area where the weather keeps you confined inside most of the time.  I have
 no plans in the future to move back to Northwest Indiana.  Well it's time to
 go out for dinner and have some great sea food, your all invited, just hop
 on a plane and will pick you up at the airport.

 Take care all,

 Greenie

  In a message dated 4/27/2011 11:46:05 A.M. Eastern Daylight Time,
 swanson.sherri...@gmail.com writes:

 Hey Greenie,

 I know where Porter, IN is. I would agree that the winter of 2010 was just
 awful. I live about 1/4 mile from the lake and we had all that snow. My
 husband and I watch it snow and wait for it to stop in February. It took us
 about an hour or more to get all of the snow removed from our driveway and
 front walkway.

 I have been to Northwestern Med. Center many times for consultants. I use
 to see Dr. Tallman but he moved to New York. My onc will suggest a new
 doctor when he wants me to go there again.  That is nice that you will be
 able to spend some time with your brother here in the windy city and then go
 back to where it is warm.

 I have thought about moving many times but my husband has grown children
 here and he wants to be close to them. May be some day I'll win and we will
 move to a warmer climate. I can always hope.

 You take care and keep in touch.

 Sherri



 On Tue, Apr 26, 2011 at 4:48 PM, myvet...@aol.com wrote:

  Hi Sherri,  I still have a townhouse in Porter, IN. 2 miles south of
 Lake Michigan.  The winter of 2010 I told my wife it's time to move south.
 My brother has a home in Naples and goes back north to Indiana for the
 summer.  I will be flying into Chicago next Wednesday morning.  My son will
 pick me up at Midway airport then take me to Northwestern Med. Center down
 town Chicago for my 6 month blood work and pick up a 6 month supply of
 Med's.  Will have lunch with him spend the afternoon and he will drop me off
 at Midway for my return later that afternoon.

 I'm not sad about leaving the area, I lived most of my life, except for 4
 years in Springfield, MO.  But the weather is just to cold for me in the
 winter.  The wind and snow would come off the lake and I would freeze.  At
 lease in the south when it gets HOT you can still go out side.  But up North
 when it's cold your stuck inside and you don't see the sun for weeks on
 end.  It's nice down here and we are about 3 miles from the Gulf, and I go
 fishing 3 to 4 times a week.  My wife looks for shells while I fish.  And
 lots of sunshine, and lots of things to due.  To each his own.

 All you folks take care of yourself's.

 Greenie
 Club member 

Re: [CMLHope] New to the group

[sherri swanson]

Hey Greenie,

I know where Porter, IN is. I would agree that the winter of 2010 was just
awful. I live about 1/4 mile from the lake and we had all that snow. My
husband and I watch it snow and wait for it to stop in February. It took us
about an hour or more to get all of the snow removed from our driveway and
front walkway.

I have been to Northwestern Med. Center many times for consultants. I use to
see Dr. Tallman but he moved to New York. My onc will suggest a new doctor
when he wants me to go there again.  That is nice that you will be able to
spend some time with your brother here in the windy city and then go back to
where it is warm.

I have thought about moving many times but my husband has grown children
here and he wants to be close to them. May be some day I'll win and we will
move to a warmer climate. I can always hope.

You take care and keep in touch.

Sherri



On Tue, Apr 26, 2011 at 4:48 PM, myvet...@aol.com wrote:

  Hi Sherri,  I still have a townhouse in Porter, IN. 2 miles south of Lake
 Michigan.  The winter of 2010 I told my wife it's time to move south.  My
 brother has a home in Naples and goes back north to Indiana for the summer.
 I will be flying into Chicago next Wednesday morning.  My son will pick me
 up at Midway airport then take me to Northwestern Med. Center down town
 Chicago for my 6 month blood work and pick up a 6 month supply of Med's.
 Will have lunch with him spend the afternoon and he will drop me off at
 Midway for my return later that afternoon.

 I'm not sad about leaving the area, I lived most of my life, except for 4
 years in Springfield, MO.  But the weather is just to cold for me in the
 winter.  The wind and snow would come off the lake and I would freeze.  At
 lease in the south when it gets HOT you can still go out side.  But up North
 when it's cold your stuck inside and you don't see the sun for weeks on
 end.  It's nice down here and we are about 3 miles from the Gulf, and I go
 fishing 3 to 4 times a week.  My wife looks for shells while I fish.  And
 lots of sunshine, and lots of things to due.  To each his own.

 All you folks take care of yourself's.

 Greenie
 Club member #48

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Re: [CMLHope] Druker in Smithsonian Magazine

[sherri swanson]

I had seen that article before but it was nice to read it again. Thanks to
Dr. Druker and the CML Research team for all their hard work!

Sherri

On Tue, Apr 26, 2011 at 8:25 AM, marcon mar...@enter.net wrote:

 The May 2011 issue of Smithsonian Magazine features Dr.
 Druker  the cml research. Named in the article are cmlers
 Susan McNamara, Jerry Mayfield, and Jane Graham. The
 magazine Web site is smithsonian.com It's a great article.
 Hope you get to see it.

 Ruth Marcon

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Re: [CMLHope] New to the group

[sherri swanson]

Hey Greenie,

The only time I was happy about being cold was when I was getting hot
flashes.  That is when my poor husband and I would have the discussion about
it being to warm in the house and I would threaten to turn the thermostat
down to cool off the house. But living in Chicago and being near Lake
Michigan, we are always cooler. So, I can understand her wanting to control
the thermostat and you wanting to cover up. Hang in there!

Sherri in Chicago.

On Tue, Apr 26, 2011 at 5:57 AM, myvet...@aol.com wrote:

  Girls, I don't want to break your bubble but I still get the night sweats
 also and I'm a guy.  They come and go and now I living in Fort Myers, FL.
 I'm always cold but I also can not  take to much heat.  My wife is always
 hot, I turn the air down and she comes along and turns it up.  This goes on
 24 - 7.  It's just part of being on Gleevec.

 Greenie

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Re: [CMLHope] Re: New to the group

[sherri swanson]

Hey Suzieq,

Thanks for the advice and the welcome.

I've been sleeping in a t-shirt for a long time. I thought that would help.
But, I wake up freezing in the meddle of the night from the sweat. LOL The
rash was on my arms and the oncologist gave me some cream to use and cleared
up in a few weeks.  The joint pain is uncomfortable but I'm getting through
it right now without taking anything. Oxycodone and stuff like that does not
work for me.

Hang in there and keep in touch.

Sherri

On Fri, Apr 22, 2011 at 3:27 PM, Suzieq sheila.a.wat...@gmail.com wrote:

 Welcome to our group, Sherri.  I'm on 400 mgs. of Gleevec and have
 been since 'Feb. 04.
 Yes, I'm having the night sweatsjust went on a search for 100%
 cotton stuff to sleep in
 thinking that might help.  Had to settle for some shorts and t-
 shirt. :):)  But the nylon stuff is the
 worst  I find myself dripping in sweat in the middle of the night.
 Not so much chills anymore,  but
 I did have those early on.  This is just one more thing we with CML 
 Gleevec must deal with.

 I haven't had the rash so to speak,  but have a place here and there
 that constantly itches. Usually a place
 about 3 or 4 inches and there isn't anything showing like a rash,
 just itches.  I use Monkey Butt powder and that
 seems to help. LOL!!!   I do have the bone and joint pain
 constant..I take Advil Liquid Gels and mild dose of
 Oxycodone when too bad to tolerate.

 Hang in there and keep looking up,
 Suzieq

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Re: [CMLHope] New to the group

[sherri swanson]

Hi Millie,

Thanks for the kind words. They mean a lot. So far everyone in the group has
been helpful and fourth coming with advice. Hope you do well on Tasigna.

Stay in touch.

Sherri

On Thu, Apr 21, 2011 at 2:22 PM, C.M. Houtz ho...@ptd.net wrote:

 Hi Sherri...I didn't have the hot flashes on Gleevec, and was on 800 mg.
 before being switched to Tasigna.  I was, however, cold all of the time.  I
 wore sweaters in the middle of summer.  I was in my 60's and had a
 hysterectomy and still hadn't gone through menopause.  I really have never
 been bothered with the sweats you're speaking of.  I do hope that you will
 continue to join our group as everyone is so nice and helpful.  Sometimes
 just knowing you're not the only one having these side effects helps.  Take
 care.Millie
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Re: [CMLHope] New to the group

[sherri swanson]

Beth,

Fortunately I'm not in Peri-menopause I'm in full blown menopause hooray!
The shivering and the sweating are just nuts and you're right, it is like
your thermometer is broken. I would look for the heaviest blanket I could
find to wrap up in and still shake.  My face doesn't flush or get hot, but
my skin is so cold I could keep meat fresh. LOL.

Glad to know that I am not a lone. Keep in toch.

Sherri

On Thu, Apr 21, 2011 at 2:05 PM, sion...@aol.com wrote:

 Had the night sweats with the chills. It sucks. Shivering and sweating.
 It's like my thermometer is broken. Sometimes it's a face flushing red and
 chills. Sometimes face flush and hot... It's wacky!

 Sent via BlackBerry by ATT
 --
 *From: * bkbar...@aol.com
 *Sender: * cmlhope@googlegroups.com
 *Date: *Thu, 21 Apr 2011 13:12:38 EDT
 *To: *cmlhope@googlegroups.com
 *ReplyTo: * cmlhope@googlegroups.com
 *Subject: *Re: [CMLHope] New to the group

 While have not had them myself, I am aware that night sweats are a known
 side effect for some people on the Kinase inhibitors. You are definately not
 the only one to experience it. Perimenapause can be another culprit, but the
 cold feeling...Ikno others have reported here as well..Hope it helps you to
 know that you are not alone, fellow warrior...Beth

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Re: [CMLHope] New to the group

[sherri swanson]

Hey Marcie,

Glad to know that someone else has to change there sheets too!  I woke up
the other night and my pillowcase was just soaking wet with sweat. There I
was at 3:00 a.m. waking my husband so I could change the sheets. How nice of
me. :) I am going to talk to my onc when I see him at my next appt and let
him that I am having this issue as I did not have it when I saw him last.
And, my blood work has been okay. So glad to know that it is not the
menopause as that gets the blame for everything.

Hang in there and keep in touch.

Sherri
Illinois

On Thu, Apr 21, 2011 at 1:18 PM, margoo...@aol.com wrote:

 I was dx in March '09, started 400 mg Gleevec, bumped up to 600 mg in
 spring of '10.  I started with horrible night sweats in the last two months
 and I am well past menopause, age 59.  I also get terrible chills.  My
 hem/onc says it is a side effect that other patients have complained about
 and there doesn't seem to be much that can be done to alleviate the
 problem.  I have the sweats so bad that my sheets are often soaked.  Hang in
 there, Sherri, I'm right there with you!

 Marcie
 Baltimore



 -Original Message-
 From: sherri swanson.sherri...@gmail.com
 To: CMLHope cmlhope@googlegroups.com
 Sent: Thu, Apr 21, 2011 9:08 am
 Subject: [CMLHope] New to the group

 Hello everyone!

 I was dx with CML in 2003 and am on 600 mg Gleevec once a day. I have
 had all of the ugly side effects from bone pain to rash. But I have
 stuck it out. Now I am going through night sweats. At first I thought
 it was menopause, but I'm not having any hot flashes and when the
 sweats come, I'm so cold. Has anyone else had this problem? This is a
 new side effect for me and I'm hoping that someone else has had it.

 Thanks.

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