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

[Sheila Watson]

Thanks Amy:

It caught me off guard for a minute when I first saw it.  But I realized it
was a scam.

Sheila

On Sat, Jul 18, 2020 at 5:10 AM  wrote:

> 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>
>
>- Hello - NICK WOODS <#m_7486913211620045013_group_thread_0> - 1 Update
>
> Hello - NICK WOODS
> <http://groups.google.com/group/cmlhope/t/9092a89f485eec97?utm_source=digest_medium=email>
> AAFAAmy : Jul 17 03:43AM -0700
>
> Folks, this a scam, and one that’s been around for a while. Please don’t
> ever respond to messages like these.
>
> Stay safe!
>
> Amy O’Keefe
> DX with CML 4/2001
> Back to top <#m_7486913211620045013_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
> <https://groups.google.com/forum/?utm_source=digest_medium=email#!forum/cmlhope/join>
> .
> To unsubscribe from this group and stop receiving emails from it send an
> email to cmlhope+unsubscr...@googlegroups.com.
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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 5 updates in 1 topic

[Sheila Watson]

Marty,  I am glad to hear that.  I was worrying over ya'll earlier today.
My brother is still in Hudson (up above Tampa about 30 or 40 miles.  I
worry about him,  but he is suppose to be going to a friend's home that is
safer than his doublewide.  Glad ya'll left.

SuzieQ

On Sat, Sep 9, 2017 at 5:15 AM,  wrote:

> cmlhope@googlegroups.com
> 
>  Google
> Groups
> 
> 
> Topic digest
> View all topics
> 
>
>- Words OF WISDOM. <#m_-4898125288136713740_group_thread_0> - 5 Updates
>
> Words OF WISDOM.
> 
> myvet...@aol.com: Sep 08 09:39AM -0400
>
> Hi all, Grace and I are getting out of dodge.  We are  heading for Indiana
> to stay with family.  After this is over I hope we have a home in Fort
> Myers to live in.   And my pure Corvette I hope it's still their.  Stay
> safe.
>
>
> greenie
>
> In a message dated 9/7/2017 9:28:12 PM Eastern Standard Time, 
> wa2...@gmail..com
> writes:
>
>
> Hi Marcie,
>
> Glad that you found my story interesting. I live in Boynton Beach about 90
> miles north of Miami.
>
> 18's,
>
> Marty
>
> On Thu, Sep 7, 2017 at 9:21 PM, 'Marcie Goodman' via CMLHope <
> cmlhope@googlegroups.com> wrote:
> Marty,
>
> Such a beautiful story which brought me to tears. Thanks, as always, for
> sharing. By the way, you aren't in Miami now are you?
>
> Marcie
>
> Sent from my iPad
>
> On Sep 7, 2017, at 9:11 PM, Marty Gartenberg  wrote:
>
>
> Joyce, Jeanie and everyone here,
>
> I learned something a very long time ago. If you or someone else looks out
> of a window then it is what they see that can make a big difference in
> their lives. I wrote this story a very long time ago and i always
> remembered it. It wasn't necessarily what this person would see but it was
> something that was explained to make "someone" happy for what they were
> able to "see"
>
> Now over the years that followed i have seen this plagiarized and it
> really hurt me, but i assure you that i am it's original author. There are
> many details in it that i personally went through.
>
>   The Window
> There were two men in the cancer ward of Mount Sinai Hospital in New York
> City. They were in Ward KCC-6 North, which was at that time the cancer ward
> at that hospital. Both of these men were suffering from the end stages of
> Leukemia. They were there basically to die. One of these men had his bed
> right next to the only window in the room. The other one was across the
> room and had no access to the window. The man by the window would always
> tell the other man how beautiful it was looking out of that window, and let
> him know what was happening outside. He would talk about the beautiful
> skies, and how all of the little children were playing in Central Park. He
> would tell about the green grass and the people who were having a picnic,
> and the dogs that were running around, as well as the ice cream truck with
> the man selling ice cream pops to the little children, and the hot
> dog vendor also selling hot dogs with mustard and sour kraut. He would tell
> the other man that he would be able to see all of this for himself once he
> was healed. This went on for about two weeks, and one morning the nurse
> came into the room as she usually did, and presented these two men with
> their sponge baths. She first went over to the man who was by the window to
> find that he had passed away in his sleep. She then covered him up and left
> the room for a couple of minutes. When she returned, there was a doctor
> with her. This was a fairly new young doctor who would pronounce the man
> dead, and at that particular time, 8:40 a.m. even though he had obviously
> passed away some time during the night. The other man across the room with
> tears running down his cheeks became quite depressed at seeing his roommate
> wheeled out of the room, declared dead. He thought about how this man would
> always try to make him happy with him describing all of the nice things he
> was able to see outside. Later on that day the nurse returned and made up
> the bed in the room that was now unoccupied. The man in the other bed asked
> if by any chance he would be able to be put by the window. The nurse was a
> very kind and compassionate woman besides being a very competent nurse, and
> she wheeled him over. Although this man was unable to prop himself up to
> see the outside because he had recently had his Spleen surgically removed,
> he tried but finding it was just impossible. The next day came, and he
> again tried and although he was in a great 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 updates in 1 topic

[Sheila Watson]

Thank you, Marty.  Will get one in the mail.
Suzieq


On Mon, Jun 30, 2014 at 5:13 AM, cmlhope@googlegroups.com wrote:

   Today's topic summary

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

- Millie #146ec439deb8c263_group_thread_0 [3 Updates]

   Millie http://groups.google.com/group/cmlhope/t/baea73bc0d4627b8

Marty Gartenberg wa2...@gmail.com Jun 29 11:17AM -0400

I just spoke to the nurse at Millies hospice who told me that she is
resting comfortably. Millie is sleeping right now but when some of her
relatives drop by they will give me a call and I will be sure to pass
it along to everyone.

As her son most wisely wrote, she is still driving the bus.

Hopefully she just might surprise everyone. That is my wish and I'm
praying that she is able to drive that bus along her route for some
time to come.

Please try not to forget to keep on sending her your cards. She just
loves to hear from all of us.

Claudia Mildred Houtz
2455 Blackriver Road Room 6
Bethelem, PA 18252

18's,

Marty




Marty Gartenberg wa2...@gmail.com Jun 29 04:30PM -0400

I was just called by Millie's son Chris. He put the phone to Millies
ear and I told her that everyone is praying for her. All of us are
missing her but we all know that even though she is not able to get on
here she is still thinking about us.

Chris mentioned that she is not suffering any pain and I was happy to
be hearing that. Even though she can't speak he told me that she can
still hear and I was happy that I was able to speak to her.

I will keep everyone informed but Chris told me that he will continue
to try and post here.

I just want to say that there were other people in this group and some
other groups as well, that were considered to be the Matriarchs or
Patriarchs of the groups. If you may recall one of these people was
Zavie Miller. Zavie was one of the first on Gleevec. He would always
help people that were on it no matter where in the world they lived.
When he passed on there was Lottie Duthau (Mommy Lottie, as I would
call her) who kept this group supplied with any information that she
was able to find about things that were helpful to the CML community.

Now there is Millie Houtz who would always try to be of help to those
that really needed someone to be able to understand what they were
going through. Millie was always putting out her prayers for all of
us, including me and she would also email me all of the time. She was
like a mother to some in the group. She always enjoyed kuilting,
cooking, her flowers and garden, and as I recently found out, teddy
bears.

Maybe her son Chris said it right, she is still driving the bus.

18's,

Marty





Richard H richard1huff...@comcast.net Jun 29 09:04PM -0700

Thank you for keeping the group advised of Millie's drive in her bus..

I believe a round of cheer(s) should be for given to Marty for keeping
our
CML tour bus on course.

Richars H.

On Sunday, June 29, 2014 3:30:24 PM UTC-5, wa2yyx wrote:






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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 6 updates in 2 topics

[Sheila Watson]

Millie:  I sent Jeanie an email message and am hoping she gets it.  I saw
that she lives in Florida, I think and I thought she lived in Arizona. Hah!
Shows just how much I know.  Anyway, I asked where she lived at down there
as my mom is on the Gulf Coast and I was just down there in February for
her 85th birthday.  I will probably be going back in a few months and
thought maybe if Jeanie didn't live too far,  we could drop in on her for a
visit.

I am doing good.  Ya'll don't see me here much,  but I do read the posts.
 I've been awfully busy.  My CML is still in control and PCR-ABL is still
at non-detected and I see my doctor the 21st of May.  Praying that it
stays that way! :)

Love to all, 
Keep Looking Up,
Suzieq


On Fri, Apr 11, 2014 at 5:13 AM, cmlhope@googlegroups.com wrote:

   Today's topic summary

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

- Fw: [CMLHope] Fw: google account got messed 
 up#14550477a528dfe5_group_thread_0[5 Updates]
- Fw: google account got messed up #14550477a528dfe5_group_thread_1[1 
 Update]

   Fw: [CMLHope] Fw: google account got messed 
 uphttp://groups.google.com/group/cmlhope/t/3a7bc528cd8f95e1

C.M. Houtz ho...@ptd.net Apr 10 12:00PM -0400

I'm trying to forward this again. Hopefully, it will come through
alright. If it comes back, then, who knows? Millie
- Original Message -
From: C.M. Houtz
To: tasigna-support-group-...@googlegroups.com ;
CMLHope@googlegroups.com
Sent: Thursday, April 10, 2014 10:48 AM
Subject: [CMLHope] Fw: google account got messed up


Hi every one,

Jeanie asked me to let you all know what's going on with her, so I'm
forwarding the message to all of you. I figure that way you can read it for
yourselves and, if anyone wants to write her, her AOL acct. is still up and
running and should come though on this. I will get back to her soon. I was
wondering where she was. Hope this finds everyone okay. So far I'm having a
fair day.

Love  Prayers to all,
Millie
- Original Message -
From: icandoall...@aol.com
To: ho...@ptd.net
Sent: Thursday, April 10, 2014 9:38 AM
Subject: google account got messed up


Hi Millie,
I hope you are better today. Please let the lists know that my google
account got messed up and I won't be on for a while. Tell them I am good;
just fighting the same old same old.
The weather here is great, but a little cool for Fl.
My side is still killing me, but I went off tramadol; found out that
it is an anti-depressant and not good for me at this time.
How is your pain; what do you take for it?
These pain meds constipate me so I am cutting back on them. I only
took the tramadol which was supposed to be safe but it does cause
constipation.
My mulberry tree is full and the birds fuss at me if I eat them; it's
funny. Big black crows and all kinds of birds are eating them.
We got squash out the garden the other day; it sure was good; no
pesticides at all.
Beans are blooming and the corn is getting tall.
Can't wait for some good old corn.
Have a great day.
Blessings,
Jeanie3


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lblaine...@comcast.net Apr 10 04:11PM

I got it the first time!


Lenda

- Original Message -
From: C.M. Houtz ho...@ptd.net
To: tasigna-support-group-...@googlegroups.com,
CMLHope@googlegroups.com
Sent: Thursday, April 10, 2014 11:00:54 AM
Subject: Fw: [CMLHope] Fw: google account got messed up


I'm trying to forward this again. Hopefully, it will come through
alright. If it comes back, then, who knows? Millie
- Original Message -
From: C.M. Houtz
To: tasigna-support-group-...@googlegroups.com ;
CMLHope@googlegroups.com
Sent: Thursday, April 10, 2014 10:48 AM
Subject: [CMLHope] Fw: google account got messed up


Hi every one,

Jeanie asked me to let you all know what's going on with her, so I'm
forwarding the message to all of you. I figure that way you can read it for
yourselves and, if anyone wants to write her, her AOL acct. is still up and
running and should come though on this. I will get back to her 

Re: [CMLHope] Digest for cmlhope@googlegroups.com - 3 Messages in 1 Topic

[Sheila Watson]

My take on the stopping of the drugs after being negative for several
years,  I think that is up to the person and their doctor.  I, personally,
did not feel comfortable in completely quitting Gleevec after being on
400mgs. since February 2004.  What I did ask my Doctor was if we could
lower the dosage to 200 instead and she said that that would be okay.  Her
very words were, I do not feel comfortable with you going off of Gleevec,
either.  So, that is what I did,  cut my dosage in half.  So far, I am
feeling great.  Will go for my 6 month check up the day before
Thanksgiving,  and it will be awesome to see how my body has responded to
being on only 200 mgs. instead of the 400.

Love to all,
Suzieq

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 16 Messages in 1 Topic

[Sheila Watson]

Hello fellow CML'ers:
I get the posts just fine,  just not as often as before.

I'm glad to see all y'all seem to be doing good..enjoying your summer.
We are so hot and dry here,  it's unreal.  I am expecting Governor Nixon to
start talking about conserving our water usage.  It's getting dangerous.
I'm seeing large Oaks turning brown like it's winter time and some trees
are losing their leaves and then blooming like it's spring.  Weird!

I am doing pretty good on the 200 mgs. of Gleevec daily except I've noticed
that I'm back to getting queasy and nauseated once again after I take
them.  I think it depends a lot on what I eat. :):)

Going next Tuesday to see a doctor about Pain Management and taking
Steroid shots in the lower back to see if it will help the pain I'm having
there.  My Chiropractor says he thinks it is because I have Osteoarthritis
really bad in both SI joints.  I am taking up to 3 Oxycodone and 8 to 12
Liquid Gel Advils daily and can function pretty well pain free.  But, I'm
really tired of consuming the pain drugs.  If the shots will work,  it will
be a plus for me.  At 58 years old,  some days I feel 90.:(

I'm glad to see you responding Jeanie and that you are in Florida.  If I
ever get down to visit my Mom,  will have to holler at you and Greenie and
we can all meet up somewhere and visit!

Keep Looking Up..
Suzieq 3
Kind words can be short and easy to speak, but their echoes are truly
endless.
~ Mother Theresa

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[CMLHope] Re: Gleevac

[sheila]

I was on gleevec for 5 years and just started sprycel this past
September 2010.  I noticed that after starting gleevec that my face
would sunburn within 1/2 an hour of being in the sun.  I have to make
sure that I have sunblock on at all times, I also noticed that around
my eyes wouldn't tan anymore and my face would be blotchy.  I'm sure
this has to do with the medicine as I never had a problem tanning
prior to the gleevec.  This will be my first summer coming up being on
sprycel so I'm not sure what to expect.

Sheila

On Jan 26, 1:09 pm, margoo...@aol.com wrote:
 Hi Greenie:

 I can not tolerate the sun on Gleevec at all.  I get a real quick sunburn so 
 I try to stay out of it as much as possible.  Of course, it helps to live in 
 Baltimore year round, as we have another snow storm today!

 Best regards.

 Marcie



 -Original Message-
 From: Pete Pabon nyc...@hotmail.com
 To: cmlhope cmlhope@googlegroups.com
 Sent: Wed, Jan 26, 2011 12:57 pm
 Subject: RE: [CMLHope] Gleevac

  Has anyone had a problem with High protein in the Urine?

 From: myvet...@aol.com
 Date: Wed, 26 Jan 2011 12:42:54 -0500
 Subject: Re: [CMLHope] Gleevac
 To: cmlhope@googlegroups.com

 Hi group,  I have a question.  Has anyone had a problem about getting to much 
 sun.  Over heated while taking Gleevec.  I had a problem a few years ago with 
 heat exhaustion and got a little to much sun a few days ago, just don't feel 
 that great.  I know they don't mix every well.

 Greenie

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 Hide quoted text -

 - Show quoted text -

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Re: [CMLHope] Digest for cmlhope@googlegroups.com - 2 Messages in 1 Topic

[Sheila Watson]

On Mon, Jan 3, 2011 at 4:18 AM,
cmlhope+nore...@googlegroups.comcmlhope%2bnore...@googlegroups.com
 wrote:

   Today's Topic Summary

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

- Price of Gleevec keeps going up #12d4b630902dd510_group_thread_0 [2
Updates]

   Topic: Price of Gleevec keeps going 
 uphttp://groups.google.com/group/cmlhope/t/dce4b93d4959998f


  You could very well be right.  Never thought about that  it
certainly would not surprise me at all if it's true.








ss5...@aol.com Jan 02 04:37PM -0500 ^ #12d4b630902dd510_digest_top

A very simple answer as to why the insurance company won't let you buy
from
another pharmacy: The insurance co owns the pharmacy that they make us
purchase the gleevec from.



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[CMLHope] Re: I wrote to Sheila offline to spare her embarrassment

[sheila]

You really crack me up that you posted this for everyone to see. Like
I told you this does not embarass me, and no I wasn't having a bad day
I was actually having an awesome day.  I don't know how you don't
think that the first e-mail you sent me was agressive???  All I was
doing why trying to give Greenie some inside on Dr. Talpaz and then
you come along and tell me that I don't kow what I'm talking about
when I was told by Zavie a few years back (and I'm really sure I could
find the e-mail) that Talpaz was on the gleevec team, plus Talpaz told
me himself...and I wasn't personally calling Zavie a liar (sorry if
that's the way you took it Zavie and Marty) I was asking you Susan if
you thought he was a liar, sorry if you can't understand my sarcasm.
I used to find his group helpful and now all it is is people
constantly nit picking everything, what a joke anymore!  Also you
didn't post my last e-mail to you yesterday so I will paste it here,
don't want to leave anything out do we? Since I'm such a mean
agressive person :)

To: educatorsu...@aol.com
Subject: Re: about your comment on Dr. Talpaz

Is this a threat...WOW grow up and if you feel the need to post this
so go right ahead I really don't care and if you think this would be
embarrass me you are so wrong.  What a joke you are and I  thought
this site was something good well with people like you lurking I
guess I was wrong.  Like I said grow up and if you feel like
tattling on me to the group because apparently you know it go right
ahead :)









On Jul 1, 1:06 pm, educatorsusan educatorsu...@aol.com wrote:
 Dear Everyone:

 I need a little help here.  I responded to Sheila privately to spare
 her anything embarrassing.  However, she was VERY aggressive and I
 HAVE NEVER been treated like this before.  I conferred with Zavie as
 well and he semi-agreed with me...let me know what you think and how I
 could do better the next time.  Like I said, I have NEVER been told
 anything negative and my last email to Sheila was that I was going to
 have to bring this to the group.

 This is pasted from the emails sent (my original comments should be
 read from the bottom up so you are current with the whole
 conversation:

 Sheila:

 You are going to force me to send this whole correspondence to the
 CMLHOPE group.  This is not even funny.  I am sorry that you feel this
 way about me.

 Hugs,
 Susan

 In a message dated 7/1/2010 11:32:54 A.M. Eastern Daylight 
 Time,dsh...@midwaynet.net writes:

 Not really being polite in my book.  Zavie Miller told me he was on
 the team that invented gleevec so I guess now he's lieing...whatever
 really don't care. Like I said I'll never reply again to a post.  You
 came off as being a no it all bitch...sorry



 ---Original Message---

 From: educatorsu...@aol.com
 Date: 7/1/2010 10:25:58 AM
 To: dsh...@midwaynet.net
 Subject: Re: about your comment on Dr. Talpaz

 Sheila:

 I was being polite.  I was not ass chewing.  I am a lurker on the
 group and keep up daily with the digests.  I know that you are proud
 that he is your doctor.  I just wanted you to be informed.  Ass
 Chewing would have been replying via the digest...I thought I was
 being considerate...

 Hugs,
 Susan

 In a message dated 6/30/2010 1:14:52 P.M. Eastern Daylight Time,
 dsh...@midwaynet.net writes:
 OK  I didn't mean to get an ass chewing...I was told by someone
 else in the group a few years back that he was involved SORRY, guess I
 won't be posting anything again, just trying to help a fellow CMLer
 along

 ---Original Message---

 From: educatorsu...@aol.com
 Date: 6/30/2010 11:00:12 AM
 To: dsh...@midwaynet.net
 Subject: about your comment on Dr. Talpaz

 Sheila:

 Dr. Talpaz did not NOR did he have any input on the development of
 Gleevec.  His main focus was the old drug Interferon, of which he is
 still experimenting with this drug to help Gleevec along.

 The only way Dr. Moshe Talpaz became involved was when at MD Anderson,
 he chose to become involved since he realized his pet, Interferon, was
 going nowhere fast!!!  This is the scoop!

 I did not want to embarrass you in front of the group so I am choosing
 to just email you privately.

 I just thought I would give you a little bit of history.  This does
 not make Dr. Talpaz in my opinion any less of a doctor...BUT he had NO
 INVOLVEMENT in the trials with Gleevec.

 Hugs,
 Susan Rosenthal

 AGAIN, please advise me as to how to handle this in the future...just
 reply to the group instead of individually?  I am just assuming that
 Sheila had a very bad day!

 Hugs,
 Susan Rosenthal

 Miami, Florida
 dx. January 8th, 2003
 Began Gleevec: 4/10/2003
 Ceased Gleevec: 4/21/2003
 Rebegan Gleevec: 4/25/2003
 Tranfusion dependent: May 2004-November 2005
 Gleevec reduced to 400mg: 8/2004
 Gleevec reduced to 300mg: 8/2005
 Gleevec reduced to 200/300 alternating days: November 7, 2006 to
 present day except now I am taking 250 every day now...
 Still undetectable 9/24/2008
 BMB/BMA

[CMLHope] Re: Hi group

[sheila]

Hi Greenie, We talked through e-mail a few years back I am from
DeMotte, IN and was diagnosed coming up in August 5 years ago.  I used
to drive all the way to Mayo Clinic until a couple  years ago Zavie
had mentioned Dr. Talpz at the University of Michigan, he is now my
doctor and is absolutely WONDERFUL!  You are treated as a person and
not just a number.  When I go to see him I get atleast 20 minutes if
not more of his time he always tells me of the new stuff they are
working on and always goes over my concerns and doesn't leave the room
until we've had a good discussion.  My case is probably a little
different than most I have been on 800 mgs since close to being
diagnosed a year.  The University is under 4 hours for us to drive,
better than the 8 it used to take us to get to Mayo
and to get my 2 minutes worth there and drive back!  Dr. Talpaz was on
the team that invented gleevec and tasigna and is doing a trial right
now with gleevec and another drug (can't remeber the name, it's what
they used at the very beginning~hydrea??? that kinda sounds right) and
told me that when he can get the other drug for his patients for free
through the pharmaceutical company he will let me in on this.  He
thinks it could be a cure, so we'll see.  If there is anyway you could
get up to see him I would highly advise it, you won't be sorry.  I
have his number if interested, just let me know!  Take care!

Sheila Hoffman
dsh...@midwaynet.net


On Jun 23, 10:30 am, myvet...@aol.com wrote:
 Hi, I've noticed the same thing about less mail.  I had  blood work at
 Northwestern Hosp. in Chicago June 2nd. and my new Doctor called  me to let me
 know that cancer cells were showing up in my blood.  I've been  in a study
 beginning Feb 5, 2000 and now after all these years I'm having  problems.  She
 wants me back June 30 for more blood work, if their is no  change then she
 wants to do a BMB.  Of course she told me not to worry, yea  sure.  She
 said, their are other drugs out their that we can use.  But  she didn't know
 that I get my Gleevec for free from Northwestern.  That I'm  grand fathered in
 for life.  Some of these Doctors have no idea what's  going on, their in
 their own little world and don't have cancer. They  just go to work each day,
 spend 3 min. with you in a room and out the door.  Their are some good
 Doctor's out their that will listen but this one I have now,  she's got to 
 go.  
 I'm going to ask for a different one on my next  visit.  Sorry lady, don't
 mean to hurt your feelings but you just don't  understand.  

 Greenie

 In a message dated 6/22/2010 4:39:21 P.M. Central Daylight Time,  

 margoo...@aol.com writes:

 Hi  Greenie:

 This is Marcie in Baltimore.  I have not received any  undesirable mail
 from you either.  I'm a relative newcomer to the  group.  The main thing
 I notice is that there seems to be less  traffic between all of us.  
 Hope everyone is doing well.  I was  dx in March '09, 400 mg Gleevec,
 did well until February '10 and got  bumped up to 600 mg.  Getting used
 to the higher dose was just like  starting out new, very difficult, but
 my numbers are greatly  improved.  I have needed red cell infusions due
 to the Gleevec and I  just found out that my throid is out of whack,
 unrelated to the CML.   All in all, I am so grateful to have an illness
 that is manageable.   Best wishes to all of you and thanks for always
 being so supportive of our  group.



 -Original Message-
 From: C.M. Houtz  ho...@ptd.net
 To: cmlhope@googlegroups.com
 Sent: Tue, Jun 22,  2010 4:53 pm
 Subject: Re: [CMLHope] Hi group

 Hi GreenieHope  that this finds you wellor as well as any of us
 can be.  I  haven't received any xxx rated mail from you.  In fact my
 mail is  working just fine.  I get most of the things sent out, if not  
 all.  I went on facebook, but got off fast as I was getting  unsolicited
 mail from different men, and this 71 year old lady doesn't  need that.  
 I actually didn't put my information out on it, but  decided it wasn't
 something I wanted to participate in.  I never did  connect with any of
 the CML people.  Oh wellHope that this gets  through to you okay.  
 Millie

 - Original Message  -
 From: myvet...@aol.com
 To: CMLHope@googlegroups.com
 Sent:  Saturday, June 19, 2010 7:53 AM
 Subject: [CMLHope] Hi group

 For  some odd reason some sort of unwanted mail is going out to people
 in my  address book.  Some of the mail is mail that I wouldn't sent to  
 anyone.  I don't know how this happened but I must have received some  
 spam, etc. I've reformatted my computer but that has not helped. I have  
 friends that send me mail that I would not send out to anyone if you  
 know what I mean. I've send them back telling them Not to send me  
 anything that xxx rated.  I hope that nothing like this has gone out  to
 our CML web site. I seen to have stopped getting any mail from our CML  
 site and I don't know  why.

 greenie

 --
 [CMLHope]
 A support

[CMLHope] Re: BMB's - still necessary or the way we have always done it?

[sheila]

Hi Greenie, I retain A LOT of water due to gleevec, my doc~ Dr. Talpaz
from the University of Michigan says I'm retaining about 30 ~ 40
(which is VERY depressing)pounds of water weight.  He gave me a
prescription for water pills back in October and needless to say it
has not helped at all.  I see him in a couple weeks so we'll see what
he says.  He actually mentioned changing me to sprycel because of
this...

On Apr 15, 11:24 pm, myvet...@aol.com wrote:
 Hi Group, I have a question?  The last few days we have  been in the low
 80's and my angles and my feet have swelled up. Never had that  problem
 before. Any ideas. My wife has some water pills I wonder if I should  take one
 Friday, just to see if it goes away.  Greenie

 In a message dated 4/14/2010 5:32:39 P.M. Central Daylight Time,  

 jku...@milwpc.com writes:

 Dear Patrick,
 I was diagnosed in 2005, and have had 4 bone marrow tests done the first  2
 years and have not had one since.  My Onoc does the pcr test every 3  
 months and feels as long as that is good there is no need.  I am not  going to
 argue with him, a blood test is much easier.
 Good luck\
 carolyn



 - Original Message -
 From:  _patrickemailguard-g...@yahoo.com_

 (mailto:patrickemailguard-g...@yahoo.com)  
 To: _cmlh...@googlegroups.com_ (mailto:cmlhope@googlegroups.com)  
 Sent: Wednesday, April 14, 2010 10:50  AM
 Subject: [CMLHope] BMB's - still  necessary or the way we have always done
 it?

 Just wondering. Am I the only one here who's never had a BMB?
 About a  year into my little journey my onc mentioned one. But when I asked
  what we would learn from a BMB that would alter my course of treatment  he
 didn't really have an answer. (My CBC numbers all jumped to the  normal
 range within 2 months of starting Gleevec. - Well, excluding  CD4/CD8 counts
 anyway which are part of my much longer story.) So not  being that curious
 I/we opted to continue blood counts and BCR-ABL  testing as long as things are
 stable. He opined that he wished he had  a baseline but that was about it.
 Patrick
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[CMLHope] Gleevec or Dasatinib

[sheila]

Hello!  I don't post much, but I really need some help here. To make a
long story short I was disagnosed 3 years ago in August 2005 with cml
at Mayo Clinic at first I was diagnosed by a local oncologist  with
myleofibrosis at this time I was a month past my 37th birthday.  That
doc sent me on to Minnesota where they did another bmb and found that
I had the philly chromosome.  I started gleevec 400 mg right away and
was monitored by a doc from Indy and he kept in touch with Mayo. I
responded great at first, at diagnosis I was 98% philly + with in 3
months I was down to lower digits and Mayo was very happy and told me
they would see me in 6 months, well by December my white count went
too low so my Indy doc had me taking gleevec everyother day. This
bounced my white count back up but it also started my phiily's to
increase and my platelets to rise.  So when I went back to Mayo in
March 2006 the philly's were on the rise so they increase the gleevec
to 800 mgs and monitored me very close and I was getting every other
week shots for the low white count until finally by Sept 2006 I was
finally zero with my FISH test. So since I have stayed on 800mgs then
they started doing a pcr test and I have yet to reach zero I am at
0.05% I have the FISH and the pcr test done every 3 months, I have
blood drawn and sent up to Mayo then I drive 8  hours from Indiana to
get my results (crazy!) I have a tendency to go up a little then 3
months later go down then 3 months I go up a little then back down,
they gave me a graph so I could see this.  I have been zero on the
FISH since 2006 and they tell me that this is the test that they
really go by but now the Mayo doc tells me he wants me to switch from
gleevec to dasatinib.  My Indy doc and me talked about it before and
we both agreed that if it ain't broke don't fix it so Mayo is
letting me decide what to do but they highly recommend the switch.  I
have very few side affects with the gleevec and the Mayo doc told me
all the side affects from the dasatinib which totally freaked me out.
My husband thinks I should stay on the gleevec and so do I, but I just
don't know if that really is the right decision and that's where I
need some help here!  Anyone's opinion would be greatly appreciated.

Thanks!

Sheila

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[CMLHope] Re: Update

[sheila]

HEY GREENIE!  I LIVE IN DEMOTTE, IN.  NOT TOO FAR FROM HOBART.  THE
WINTERS REALLY ARE TERRIBLE HERE, AS A MATTER OF FACT I'M SITTING HERE
AT WORK FREEZING!

TAKE CARE, SHEILA


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[CMLHope] Re: Anjana

[sheila]

How long had Randy been on 800 mgs?  I have since June 2006.  I usually
end up with a neulasta shot once a month.  I just go over a bad case of
the flu (yuck) and I had labs yesterday and my anc was 1.3.  When I get
to 1 I get the shot.  I think the highest it's ever been after a shot
was 2.9.  At one point my Mayo doc was letting me get down to .5 and I
was never heathier, kinda strange.  My hemoglobin has been low but
talking with people I guess this is normal being on such a high dose.
I had another FISH drawn and sent to Mayo Clinic yesterday so I should
know results from that next week.  Last FISH was 3.8% 6 weeks ago down
from 68% in May.  So, I'm really hopig when my doc calls she tells me
I'm at 0 that would be great since this has been such a roller coaster
since last summer 2005 when I was diagnosed.  I guess I've ben pretty
lucky as far as side effects go I really haven't had any and if I get
them they come and go and are usually short lived and mild.  Good luck
to Randy and take care of yourselves.

Sheila
38 yrs old
dxed 8/3/05
800 mgs gleevec


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[CMLHope] anemia

[sheila]

Is it normal to be anemic while taking gleevec?  Last summer before I
was diagnosed I was anemic and after I started taking gleevec my
hemoglobin level went back to normal.  In May of 2006 I went from
taking 400 mgs of gleevec to 800 mgs.  In July my hemoglobin levels
started falling and since I have been anemic.  I was just wondering if
this was a side effect or what since I'm on a  higher dose?   I also
suffer with neutropina and average a neulasta shot about once every 5 ~
6 weeks.

Thanks!

Sheila
38 yrs old
dxed 8/3/05
800 mgs gleevec
Last FISH (5 weeks ago) 3.8%
down from 68% in May


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[CMLHope] New E-Mail address

[Sheila Watson]

Rob: 



I have a new e-mail account and will be losing my
hotmail.com  fidnet.com accounts shortly. How do we change to my new
address or do you do it on your end? Just let me know what to do on my end so
that I continue to get the posts. I guess since I set it up originally on my
hotmail.com account, I need to go in and change that so I dont have
problems signing in, right? 



My new address is [EMAIL PROTECTED]



Thanks, suzieq




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[CMLHope] New E-Mail address

[Sheila Watson]

Rob: 



I have a new e-mail account and will be losing my
hotmail.com  fidnet.com accounts shortly. How do we change to my new
address or do you do it on your end? Just let me know what to do on my end so
that I continue to get the posts. I guess since I set it up originally on my
hotmail.com account, I need to go in and change that so I dont have
problems signing in, right? 



My new address is [EMAIL PROTECTED]



Thanks, suzieq




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[CMLHope] Re: Second opinion

[sheila watson]

For my piece of mind, I would get another opinion before going through a 
transplant.  Dr.Hannah Khoury (my first hem/onc. at Siteman whom I dearly 
loved) told me that most bone marrow transplants only had a 20% to 25% cure 
rate and that's with a perfect match.  He said that they only do those as a 
last alternative when all else has failed. And,  I also know of people 
who've gone through the transplants to have the disease to reoccur later. If 
Gleevec is working for you,  I do not understand why the need for other 
treatment.  But then again,   just like someone else said, I am not a doctor 
or a nurse for that matter. But, I do know what I told my husband after 
reading all the material they sent me on having a BMT,  it would have to be 
the very last thing I did and I would have to have a perfect match before I 
put myself or someone else through all of that! It's something to think 
about, that's for sure.

Keep Looking Up,
Suzieq
dx 1/04  #964 zero club

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[CMLHope] Re: New Doctor

[Sheila Watson]

Thanks, Mike.  I had forgotten all about Google (smile).  Must be the
Gleevec Fog, huh?   What a wealth of information I found.  This support
group really is a God-send and my thanks to the person who founded it.


Keep Looking Up,
Suzieq







To: CMLHope
Subject: [CMLHope] Re: New Doctor


Just Google her name.  You'll find references to all the papers she
participated in writing, maybe a bio or two and the trials that she
managed.  You could contact some of the big name Drs. in the CML
treatment business and see if they have anything to say, but I suspect
you'll get positive responses no matter what, so that is probably a
waste of time.  You could also ask your local family Dr. or Internist
to check her out.  The most important attribute of a Dr. in my opinion
is that he or she specialize in CML treatment.  The typical oncologist
who sees a CML patient only once in a while is unlikely to know much.
Because Siteman is a National Cancer site, which tend to employ
specialists, I suspect Dr. Cashen will be well-versed in CML.

Mike Burwen






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[CMLHope] New Doctor

[sheila watson]

Good Day to all:  I just learned that I've been shifted once again to a new 
doctor within my group where I go at the Sitemen Cancer Center in St. Louis. 
  The one I was seeing is returning to research, I was told.  I am scheduled 
for next visit on July 10th and am also have BMB done that day, too.  The 
new doctor is a woman named Amanda Cashen.  I do not know her and was 
wondering if there is any way I can find out information about her before I 
see her,  just to ease my mind.  She will be the fourth doctor they've 
transferred me to since becoming a patient there.  The first one (whom I 
dearly loved) moved to Atlanta to start a Hemotology Lab such as the Center 
there at St. Louis.  After seeing the second one for about a year,  he 
transferred me over to the next one as I was told that he is only seeing 
their sicker patients (which sort of made me feel good, like I had 
graduated or something), and I was really liking the new guy even though I 
had only seen him twice, and now this.  Thanks for any info you guys might 
have for me.

Also,  on the muscle hardening issue,  I have not had that side affect so 
far after being on the Gleevec two and half years.  I do have the muscle 
cramps sometimes pretty bad in the calf of my legs.  I had more trouble with 
my left hand lock up if I was holding something or if I had it in one 
certain position.  I would have to take my right hand and physically 
straighten out my fingers. I decided it had to be from the Gleevec.  Since 
taking the 1200mgs. of calcium,  that has pretty much let up and the cramps 
aren't as often, either.  But, whenever I do have one in my leg, it's pretty 
intense and sore for hours afterwards.

Keep Looking Up,
Suzieq
dx 1/'04
#964 in Zero Club

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[CMLHope] Annie

[sheila watson]

Since it's been close to two and half years now since that first visit to 
the doctor who did the cbc test and called me at home that night and scared 
the living day lights out of me by saying something was terribly wrong 
because my white cell count was off the page and they were going to have to 
send it out to another lab to count it as they didn't have the resources at 
their small lab to do it,  I am not quiet sure what the actual count was 
when it came back a few days later and he once again called me at home 
telling me that the cat scan showed a very enlarged spleen and he was 
sending me back to my regular doctor because he was just a general surgeon 
and could not treat me. (really all he did was scare me half to death).  My 
regular doctor thought I had diversticulitis in the beginning and treated me 
with anti-biotics for that but two weeks later he could still feel the 
swelling in my lower left side (spleen, but he didn't know it) and he sent 
me to this general surgeon doctor for a second opinion who felt around on me 
and set up all the tests.  It was quiet a harrowing experience to say the 
least.  Anyway, within four days of that first visit with the dr. who called 
me at home, I was at my first hemo/oncologist and he is the one who told me 
they had to get the counts down as I was in stroke range.  I am pretty sure 
like Doug's, mine were over the 200,000 range.  But I quickly responded to 
the Hydroxyurea.  As far as the bmb and other blood tests done while I was 
waiting.I forgot to mention that that lab messed up two different 
tests and lost one causing me to have to go through retesting.  That is when 
my husband decided to work it where he could get me in to the Sitemen Cancer 
Center in St. Louis. I loved the first doctor I saw there.  He told us that 
where the other oncologist saw maybe one or two patients a week with CML, he 
probably saw a hundred a day.  I felt so very much better knowing that.  
Plus,  I've never had a problem with any of the blood testings or with how 
they do their BMB as they have a set up where you are in and out in probably 
fortyfive minutes and they are virtually pain free.  (Yippee for me).   So,  
all of those problems with the first lab could be the reason for why it took 
me at least three weeks before getting results showing PH+.

Now, people,  I have a new delimma (sp.?).  I just found out that I have 
been shifted to now another new doctor within my group. This will be my 
fourth at this facility since beginning there in March of 2004.  This is a 
woman and her name is Dr. Amanda Cashen.  Does anyone know of her and is 
there any way I can check up on her before going.  I go for my next app. 
July 10th and I am to have a BMB that day as well. Thanks for any 
information that you all give,  it really does help so very much.  I agree 
with the person who said that we had to take control of the CML and not 
let it control us.

Keep Looking up,

Suzieq

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[CMLHope] Gleevec Resistant?

[sheila]

I posted a couple of weeks ago about worrying if I was becoming
resistant to gleevec and some of you responded, I just want you to know
that I greatly appreciate all of you. This is a great group, I think
sometimes I would've lost my mind if I wasn't able to read other'
experiences, thinking I was the only one going through it.  I just went
to Mayo in MN yesterday and they bumped me to 800 mgs of gleevec and
will be re doing a FISH test in a few weeks.  They said they would know
then if it was going to work, and talked about the new drug coming out
and of course transplant.  I was diagnosed August 3, 2005 and had my
three siblings tested but no match.  I don't even want to think about
transplant.  They said because of  my age, I'll be 38 on the 21st of
June that they won't rule it out.  They said they were going to start a
preliminary search.  I just hope this dose works for me and I'm not
resistant.  Is there anyone out there that has been resistant once
again I feel like I'm the only one going through this, but I know I'm
not!  Thanks again for listening.

Sheila


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[CMLHope] Spleen

[sheila watson]

Thanks so much for all who responded to my questions.  I feel much better 
now as I was beginning to worry that something terrible must be wrong, but 
also felt that it has to be the spleen as it is exactly same area and same 
pain.  Sometimes it isn't noticeable and then like the last few days, is 
pretty uncomfortable under the left rib cage.  I haven't changed my diet in 
any way,  don't eat much dairy products  drink little milk, maybe a cup 
here and there.  I do remember in the beginning, I was sort of hooked on 
chocolate milk for some reason, but did give that up. (lol, because of the 
weight gain).  I remember the first onc. I had at Sitemen Cancer Center did 
tell me that sometimes parts of the spleen may die off and that could cause 
some pain.  But, I guess it is time I had things checked out just for piece 
of mind, huh?

For Sandy  John,  I live down around Cuba, Missouri.  It's down west I-44.  
It's just about a 75 mile drive to Barne's Jewish Hospital where the Siteman 
Cancer Center is where I go.   I think I've heard about LaHarpe, Ill. in the 
St.Louis news before at different times. Not quiet sure where it's located 
though.  We moved here in 1989 from Wichita, Kansas.  I've loved this area 
since then because of living in the flat land of Kansas for seventeen 
years,  was nice to come and see some trees and hills!  Whereabouts in 
Missouri do you live, John?

I decided to give the Juice Plus a good try as I know I don't get all the 
nutrients from veggies and fruits that one needs.  The lady friend of mine 
who has been on them for last six months says that it really helped her 
husbands seasonal allergies as well.  She also said that the veggie part 
of the regimen really helped her energy level tremendously.  So, I'm going 
to look forward to that.  I still take the Natural Energy Pure Bee Pollen 
from X-tend Life web site and I noticed that it has really helped me a lot 
with extra added energy.

Thanks again,
Keep Looking Up,

Suzieq
dx 1/ 04

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[CMLHope] Responded to Gleevec Now I'm Not ~ Anyone else out there??

[sheila]

I was diagnosed August 3, 2005 with CML at Mayo in MN.  I started
taking 400 mgs of gleevec daily.  By the 3rd week everything was almost
normal including my very large spleen but then after that I crashed.
So on on off the med I went for months.  At diagnosis 98% of my cells
were leukemic then in November when I had another FISH test done 3.4%
of my cells were leukemic.  Then in December my local onc had me take
400 mgs of gleevec every other day because I was so freaked out about
being off the med.  So in March when I went back to Mayo for a 6 month
follow up they did another FISH to find out that my cells were up to
28%.  I went back on the 400 mgs every day.  They just redrew another
FISH now my leukemia cells are 68%.  My Mayo doc called and he wants me
to take 600 mgs for a week, have labs drawn which I do weekly and if
everything is fine start taking 800 mgs daily if I can tolerate it.
I have had neulastin shots to help white count production.  I go back
to Mayo June 7th.  My doc told me over the phone that when I came that
we would discuss the new age drug and transplant.  I will be 38 in June
and have no sibling match.  He knows I am strictly against transplant.
Has anyone out there had this happen but when taken the higher dose
that it helped.  Why would I have responded at first then have it take
off again?  Am I resistant?  HELP!!

Thanks for listening, Sheila


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[CMLHope] Tea

[sheila watson]

I had a woman who works for Red Cross Blood Drives tell me that drinking tea 
(she didn't specify) depletes the red blood cells and causes anemia.  
Whether that is true,  I don't know.  I decided that I would cut back 
somewhat as I do struggle with some anemia (it's not too bad) but it hasn't 
seemed to matter.

Keep looking up,

Suzieq

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[CMLHope] For Pat Reynolds

[sheila watson]

Hi Pat:   I am one of the new ones to the group,  only a couple of months 
now.  It has helped me so much reading these posts from different people 
dealing with the same thing I'm dealing with.

I, too, struggled in the beginning two years ago when I first began this 
journey with Gleevec.  I threw up  had nausea more times than I ever did 
when I was pregnant with my son. :)  But, I learned to adjust by splitting 
the dosage up and eating as much as I could when taking it.  I started out 
on 400mgs and have always taking that amount,  with only being taken off of 
it for one week about a month after beginning because of low platelets and 
counts.  I am now able to take the whole dosage and tolerate it pretty well 
as  long as I make sure I eat enough at the time  also, I try to make sure 
I take it at the same time each day if possible.  I haven't had any bouts of 
nausea in a while or throwing up.  I don't have a big appetite either,  but 
still force myself to eat in order to take the medicine and to keep up my 
strength.  I did gain weight, not lose.  Have the water retention sometimes 
pretty bad, but just learn to deal with it.  I've had the diarreah pretty 
bad throught out this journey too,  but not so much here lately.  What I am 
learning as I go along,  I get the same side affects as every one is,  but 
not all at the same time as they come and go.  So far, I've not had any of 
the vision problems except for the swelling (usually the right eye is worse 
than the left) around the eyes, which I deal with using ice water wet 
clothes in the mornings.  I have also had this pain in my left side same 
place as the spleen since day one,  never goes away, but onc. hasn't seemed 
too excited about it.  That was what made me go to the doctor in the 
beginning, my spleen had enlarged causing me great discomfort. The second 
doctor I saw did a cbc test along with a cat scan, and lo  behold,  there 
it all was in black  white.  I had known something was not right as I had 
been losing weight steadily no matter what I ate  I told my husband that my 
bones hurt for some reason (I thought it was arthritis) which was the bone 
marrow setting up like concrete from what the onc. said the first bone 
marrow biopsy I had. I responded to the Gleevec right away,  and it's stayed 
steady since I began.  I also struggle with a few of the low blood counts,  
but they are not bad.  Actually my platelets looked really good this last 
time (March 6th)  white cells did too.  I am taking a regimine of all 
natural vitamens along with Bee Pollen,  and that has helped my energy level 
some.

Your lapse in menstral cycle is most l likely due to the endometriosis.  I 
was diagnosed when I was 32 (I had one live birth at 26 after nine years of 
trying)  my doctor thought I was too young for a hysterectomy and treated 
it at first with hormonal treatment.  It did go away for a couple of years, 
but then came back.  I would miss periods at times, but he would not let me 
go over two months as he said it wasn't good and would give me Provera to 
get me going again.  I went through this for next six years. When I turned 
38, I started going the opposite where I was having really heavy periods and 
would last several weeks.  In Janruary of 1989, I was passing large clots 
and had a dnc done,  two weeks later it all came back again.  The doctor 
told me that the only alternative was to have the hysterectomy (complete as 
I only had one ovary at the time and there was usually where the 
endometriosis collected) which I went for as I figured if we were going to 
have had any more children I would have by then.  I feel it was the best 
decision I ever made as I never felt better until the CML came along.  I am 
52 now and have never regretted having that done.  I was put on 1.25 
Premarine and stayed on it until last November when seeing a new OB/GYN who 
decided I've been on it too long (because of all the negative reports lately 
on hormone therapy) and cut my dosage in half and eventually wean me 
completely off of it. So, five weeks ago, I decided to do it myself.  I 
found some all natural products to help and that's what I've been doing.  I 
have struggled with sleeplessness for past two weeks and have had bouts of 
hot flashes, but so far that's all.  The sleeplessness can also be 
contibuted to a combination of the Gleevec as well, so I'm not getting too 
excited yet..if it continues though, I will seek the doctor's advice.   
I am all for taking control  doing whatever a person can to live a healthy 
life.  In the beginning of my diagnosis while waiting to see if I was a 
candidate for the Gleevec,  I was really stressing about the alternative as 
I am a big baby when it comes to shots, blood, pain, etc.  In fact, I've 
been known to pass out while having blood work done or i.v.'s being put in 
(so far I've been a great trooper and only had a couple of trying episodes 
but no fainting.) I got on-line and I researched as 

[CMLHope] Chills

[sheila watson]

I'm so glad to hear that I'm not crazy after all like my husband kept 
telling me when I complained of the deep chill all the way to the bone 
feelings I kept having  it would be over 90 degrees outside.   Marcia, I 
am beginning with the hotflashes so this ought to be a fun summer. :)

I also bruise easily.

Suzieq

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[CMLHope] About Calcium Glucosomine/Chondroitin

[sheila watson]

Pete:  I am sorry to hear about having the combination of Crones disease 
along with CML.  One is tough enough to deal with for sure.  My dr. told me 
that taking the Glucosomine/Chondroitin would take at least nine weeks to 
get into your system as it is a type of protien that is slow to absorb. And, 
he did say that some people do not notice any difference other than they 
don't wake up in the mornings stiff as they did before taking it.  So, I 
just stuck with it and I began to notice a difference a couple of weeks ago. 
  Before, I was waking up several nights with throbbing pain in my lower 
arms or in my lower legs.  My hands hurt, joints hurt too.  I would just 
take the Advil Liquid Gels sometimes three to four at a time for relief, but 
was worrying that I might be taking to much, so tried to just tough it out.  
Some times, I would take a hot shower and that would give some temporary 
relief.  But, I began to notice a couple of weeks ago,  I wasn't having the 
throbbing pain any longer (only when I over exerted myself).  I also was 
wrong about the amount in the bottle I bought,  it's 240 caplets for around 
$29 and they are the double strength of Glucosomine (500mg)  Chondroitin 
(400mg). I take three a day.  But,  with the crones,  I just don't know what 
to tell you.  I have a dear lady friend who has Neutropena (her body does 
not make white cells at all  she's the oldest living person with this 
disease) who found out last year that she has crones as well.  She's 
suffered with many infections, etc. and is struggling right now with 
infection to the lining of the heart.  She and her husband have two little 
girls, 4  6.  The 6 year old was born with the Neutropena and the youngest 
was not.  The only thing that keeps her going right now is her sweet little 
girls  husband and I ask that all keep her in your prayers. Her name is 
Angela. Her parents were told after she was diagnosed at 2 yrs. old that she 
would probably not live past five years old and she is now mid-thirties.  
She's been on some drug (injections twice daily) for the Neutropena and has 
done fairly well up until couple of years ago and that's when all the little 
infections began cropping updr's are saying that there is nothing 
more to be done other than a bone marrow transplant.  She just doesn't want 
to go that route just yet. Sorry,  didn't mean to get distracted.  Just hang 
in there and we'll pray for you.  Prayers sometimes help more than anything 
else.  As for the fatigue,  I did start a new vitamen regimen as well,  and 
started Bee Pollen (three capsules in the morning on empty stomach) and it 
seems to have helped somewhat.

Now for Trey,  I do not take calcium in a pill formit's the Viactiv 
Chocolate Chewable Squares that are calcium, Vitamen D  K for the bones.  I 
take two (500mg) a day.  So, I don't think I have anything to worry about,  
but I did start taking them at a part from the Gleevec just in case.   I've 
noticed that I'm not having as many muscle cramps as I was before,  so the 
extra calcium does help that.  I should have remembered because I had to 
take that one year when I was doing factory work and it was horribly hot (we 
didn't have air conditioning there) that summer and I was waking up in the 
night with awful bad leg cramps.  Someone suggested taking extra calcium and 
potassium, I did   it worked.

I just want to say that I am so happy to have found this support system for 
those of us with CML and for all the great information I'm learning.  I am 
telling my husband about every new thing I learn from the group.  He's been 
with me every step of the way and for that I am most grateful.  I can relate 
to most all the symptoms and side affects from the Gleevec,  but so far no 
eye bleeds or hair loss.  I do have the eye swelling some mornings,   but 
just use a lot of icy cold wash clothes and some eye gel from Mary Kay 
that's good. It helps knowing other people are going through the same things 
and being able to share what's going on with the disease or with our 
recovery.  Also helps having others out there praying for you, too.

Thanks again,
Suzieq
52 yr. old female
dx Jan.2004
Began Gleevec mid-Feb. 2004
remission within  4 mo.'s

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[CMLHope] Would like more info about taking Calcium while on Gleevec

[sheila watson]

Hello everyone:
I'm new to this group and am grateful for all the information I'm learning.  
I have been on 400mg. of Gleevec since February 2004. It's done it's job and 
continues to keep me in remission.  Am scheduled for next bmb in July. I am 
interested in more information about taking calcium or drinking a glass of 
milk while on Gleevec as I just began taking a supplement twice a day after 
going off Hormone Replacement Therapy two weeks ago.  I split my Gleevec to 
200mg. twice daily, so I need to know for sure about taking the calcium 
supplements in between.  I certainly do not want rock the boat now since my 
blood counts are beginning to look really good except for a slight case of 
anemia.

Also, for those of you who are experiencing the bone pain  joint pain as a 
side affect of the Gleevec,  I was put on 500mg of Glucosomene/Condroitin 3x 
a day about ten weeks ago and it has kicked in and the bone/joint pain is 
virtually gone!  I get the Spring Valley Double Strength at Wal-mart (large 
bottle of 120 @ $29).  It takes about 7 to 9 weeks to actually start taking 
affect, so be patient.  Now if someone can just tell me how to help the 
chronic fatigue,  that would be most helpful! :)

Thank you very much,

Suzieq
dx CML 1/2004
Started Gleevec 400mg. 2/2004
Total Remission 4/2004

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