To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jan 27, 2015 4:59 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Well, I have good news. We both woke up today, Grace was O. K. and later on
into the day I'm feeling much better. Tomorrow well tell the truth. I'll
-Original Message-
From: Myvety2k via CMLHope _cmlhope@googlegroups.com_
(mailto:cmlhope@googlegroups.com)
To: cmlhope _cmlhope@googlegroups.com_ (mailto:cmlhope@googlegroups.com)
Sent: Tue, Jan 27, 2015 4:59 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years
@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jan 27, 2015 4:59 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Well, I have good news. We both woke up today, Grace was O. K. and later on
into the day I'm feeling much better. Tomorrow well
P.M. Eastern Standard Time,
cmlhope@googlegroups.com writes:
YEAH FOR GOOD NEWS :) Beth
-Original Message-
From: Myvety2k via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jan 27, 2015 4:59 pm
Subject: Re: [CMLHope] My Update anyone had relapse
YEAH FOR GOOD NEWS :) Beth
-Original Message-
From: Myvety2k via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jan 27, 2015 4:59 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Well, I have good news. We both woke
The problem is no one really knows how these drugs affect our tkis. They told
me the drugs I was taking were ok with ponatinib.I was told not to get any
vaccinations.
It is a hot and miss for sure.
Prayers Blessings Jeanie 18's
On Jan 27, 2015, at 8:25 AM, Myvety2k via CMLHope
via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Jan 26, 2015 5:09 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Beth, I'm starting to think it's not the Gleevec that's given me the nausea
because my wife started to get
...thinking of you and everyone else today...
Beth
-Original Message-
From: Myvety2k via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Jan 26, 2015 5:09 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Hi Beth, I'm
Good luck on Tasigna Joan!
Blessings And Prayers 18's Love
In a message dated 1/26/2015 6:01:20 P.M. Eastern Standard Time,
lilak...@gmail.com writes:
Greenie,
I had to quit Gleevec because it was messing with my kidneys. Now I take
Tasinga.
Joan
On Saturday, January 24, 2015 at
Hi Greenie, sounds like a flu--a lot is going around now.
Hang in there!
Jeanie3
In a message dated 1/26/2015 6:06:31 P.M. Eastern Standard Time,
cmlhope@googlegroups.com writes:
Hi Joan, I don't know what's going on because a few days later Grace
started to get nausea also and we don't
Boy, I hope so like the rest of us with CML we don't need any other
problems. One of the problems down here in Florida you have a lot of people
that
come down here for the winter and some of them are sick and they bring
that with them when they arrive. We carry hand wipes everywhere we
Yes, I did get my flu shot in September, plus last week when I saw my
regular doctor here he gave me a Prevnar-13 shot. I hope that is not the
reason I'm having the nausea problem. He, said that he checked is computer to
make sure it would not interfere with my Gleevec. Good luck on that
Do you get your flu shots?
They tell us to stay away from crowds--but how is that possible?
Drink lots of fluids and stay warm.
Prayers Blessings Jeanie 18's
On Jan 27, 2015, at 7:17 AM, Myvety2k via CMLHope cmlhope@googlegroups.com
wrote:
Boy, I hope so like the rest of us with CML
Greenie,
I had to quit Gleevec because it was messing with my kidneys. Now I take
Tasinga.
Joan
On Saturday, January 24, 2015 at 9:56:22 AM UTC-6, greenie 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
luck
to you! Beth
-Original Message-
From: Joan lilak...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Jan 26, 2015 5:01 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Greenie,
I had to quit Gleevec because it was messing with my kidneys
Hi Joan, I don't know what's going on because a few days later Grace
started to get nausea also and we don't have the flu. No fever, etc. just a
little nausea, haft to give it a few more days and see what happens.
greenie
In a message dated 1/26/2015 6:01:23 P.M. Eastern Standard Time,
luck to you! Beth
-Original Message-
From: Joan lilak...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Mon, Jan 26, 2015 5:01 pm
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Greenie,
I had to quit Gleevec because it was messing with my kidneys. Now I
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
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
That's cute Richard--how old were you?
My IV went in good-no swelling.
This morning I am sick-- sore throat and mucus.
Glad everything went good Sherri but couldn't they give you something for pain??
Blessings Jeanie
Sent from my iPhone
On Jan 23, 2015, at 12:03 AM, Richard H
Richard,
You got that key word right... LIVE
Hey, bring back that needle[?] Being on the line myself I can just picture
that.
18's,
Marty
On Fri, Jan 23, 2015 at 11:35 PM, Richard H rbhuffm...@gmail.com wrote:
Seventeen and on my first adventure this wonderful world we live in.
Richard
Seventeen and on my first adventure this wonderful world we live in.
Richard H.
On Friday, January 23, 2015 at 5:38:47 AM UTC-6, Icandoallttc wrote:
That's cute Richard--how old were you?
My IV went in good-no swelling.
This morning I am sick-- sore throat and mucus.
Glad everything
Hi Jeanie,
You know that I'm praying for you. I know that everything will come out
alright.
GOD bless you Jeanie.
18's,
Marty
PS could you also pray for me to receive a kidney transplant soon. I need
to have another operation on the fistula in my arm once again. This will be
the twelfth
Hi Marty.
How are you?
I am going to have the endoscopy today. First I will go to the blood area and
have blood checked. Then to dr for consultation. Then to have the endoscopy.
Long day.
Needles are no fun but we get used to them. Some draws are good some bad.
Pray for me and all in
May I add my sea story of needles, I don't like needles but do not have a
phobia. When I arrived at boot camp the first thing was get our shots. We
walked through a line getting shots in both arms as mentioned. They were
using hugh syringes and had large pillows with the needles that was
Hi Marty and thanks so much for that uplift. I have been dreading it for some
reason.
I pray that you get your kidney soon-- I know those fistula operations are
tedious.
The procedure I dread most is the IV.
My last one last week was a miracle. The nurse put it in and I didn't feel a
Hi Jeanie,
You have been through so much it's about time that you got a break or two.
Not feeling that IV go in and no black and blue afterward then having a BMA
with little or no pain.
Well, two out of two ain't too bad is it? [?]
When I was a kid I had a phobia, and it was needles. I hated
Hi Marty
Yes a fl cracker--hope you are great today!!!
I am going to have an endoscopy thur.
First one--they put you to sleep.
Blessings
Jeanie
Sent from my iPhone
On Jan 19, 2015, at 7:55 PM, Marty Gartenberg wa2...@gmail.com wrote:
Hi Jeanie,
You sound like a real southern gal. As
Hi Jeanie,
Good luck with your endoscopy. They usually do put you out for that
procedure. I don't know if they will use a Propofol cocktail but if they do
you will go to sleep and when you wake up you will still think that the
procedure was not yet done. Very good sleep with no after effects. I
Hi Jeanie,
You sound like a real southern gal. As for me, I'm just a good old plain
city boy that also loves to go fishing. When I was a kid my father would
take me out deep sea fishing and my favorite fish was blue fish. My mother
used to cook it in milk to get rid of the fishy taste. It was
Hi all,
My family all love to fish, and we keep and eat everything legalhehe.
I was reared on good fried to a golden brown perch that live in the Fl
lakes and rivers.
There is nothing better than good fried mullet with their roe fried to t
golden brown.
We love it with grits and tomato gravy
Thanks Marty your always such a great help to me and everyone in our group.
greenie
In a message dated 1/16/2015 10:47:55 P.M. Eastern Standard Time,
wa2...@gmail.com writes:
Greenie,
I once had a problem with them and was refused some services that I
required so I started a
I no they always have so excuse.
greenie
In a message dated 1/17/2015 12:39:03 A.M. Eastern Standard Time,
rbhuffm...@gmail.com writes:
Thanks for your service, Greenie. My active duty with the Navy from 7/58
to 6/61. I do not qualify for any thing except prescriptions. I served
Hi Richard,
It seems that you are between a rock and a hard place with the VA. That is
something that you must deal with but if there is ever a chance to get rid
of them for your meds or care then I don't need to go further...
I wish you the best of luck.
18's.
Marty
On Fri, Jan 16, 2015 at
Jeanie
Sent from my iPhone
On Jan 16, 2015, at 12:40 AM, Pete Pabon nyc...@hotmail.com wrote:
jeanie, Who is your doctor at Moffitt
Date: Wed, 14 Jan 2015 21:32:26 -0800
From: rbhuffm...@gmail.com
To: cmlhope@googlegroups.com
CC: icandoall...@aol.com
Subject: Re: [CMLHope] My
Greenie, if I were you I would appeal this decision. You have absolutely
nothing to loose.
Now you know why I want nothing to do with the VA.
18's,
Marty
On Fri, Jan 16, 2015 at 7:34 AM, Myvety2k via CMLHope
cmlhope@googlegroups.com wrote:
Good morning Marty, The VA, they are on my I don't
Marty, I was planning to do just that. Thanks.
greenie
In a message dated 1/16/2015 7:22:42 P.M. Eastern Standard Time,
wa2...@gmail.com writes:
Greenie, if I were you I would appeal this decision. You have absolutely
nothing to loose.
Now you know why I want nothing to do with the
Greenie,
I once had a problem with them and was refused some services that I
required so I started a dispute and even if it took several months I
prevailed. Some of the people working there think they have the only say in
it and at times they are wrong. Now you know why I don't want to deal with
Richard,
I don't know where you live, but I really wish you could find a CML specialist
to help you determine which medication is best for you.Regular ONCs just
are not that familiar with the TKIs. Also, there is an organization that will
pay for your TKI and you do not have to jump
Thanks Marty.. Yes I I am. Quoting the man we celebrate on Monday. We
shall overcome!.
Richard H.
On Friday, January 16, 2015 at 6:09:11 AM UTC-6, wa2yyx wrote:
Hi Richard,
It seems that you are between a rock and a hard place with the VA. That is
something that you must deal with but
I do have that specialist as my Primary ONC. I have been with him since
Feb 2002. In 2001 he had 3parientsd. He has not missed a national
conference in those years. He has been with 3 different offices as he
progressed, This last one actually made him an ONC with the Kansas
University
Thanks for your service, Greenie. My active duty with the Navy from 7/58
to 6/61. I do not qualify for any thing except prescriptions. I served 5
months in The Pacific Atomic range. I arrived 6 months after the Big Mike
test. Since more people have those areas I applied for the atomic
Hi Greenie,
First, where in Florida do you live? I am on the east coast, Boynton Beach.
If we are not to far maybe we can do lunch one of these days. If my memory
serves me right I think that you may be in Ft Meyers??? If so then I guess
that lunch is out of the question...
About STI571. Do you
On Wednesday, January 14, 2015, Richard H rbhuffm...@gmail.com wrote:
I am my own advocate, I do have two ONCs. One is at a new regional cancer
center and i am completing 12 years of treatment with. The other is with
the VA. They are assigning me underqualified Drs. that should not be
Marty, My aunt left me some stock and money and one of the stocks was
Novartis and my stock guy told me to sell it. That was before Gleevec was in
any kind of study. Because of him I also lost $43,000.00 and I pulled my
money out and fired him. If I, would have, could of. Of course I
Hi again Greenie,
Like you said, don't look back but only forward.
By the way, I am an animal lover whether it be dogs, cats, birds or fish.
I am glad to hear that you threw back those fish where they belong.
18's,
Marty
On Thu, Jan 15, 2015 at 2:17 PM, Myvety2k via CMLHope
Marty, by the way my first Doctor at Northwestern, Dr. Tallman worked with
Doctor Druker. He left their and went to Chicago. Now he's at Cornell
University. My Doctor now in Chicago is the same one that Susan has, Dr.
Altman.
greenie
In a message dated 1/15/2015 1:09:00 P.M. Eastern
Thanks for your service. The only reason I use the VA is to get my
medicine. Seeing I am a cancer patient I am forced to see an Oncologist
get them to sing the prescription. Without the VA I could not afford the
Health Insurance copay until I could get assistance from the Drug
company. He
jeanie, Who is your doctor at Moffitt
Date: Wed, 14 Jan 2015 21:32:26 -0800
From: rbhuffm...@gmail.com
To: cmlhope@googlegroups.com
CC: icandoall...@aol.com
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
I am my own advocate, I do have two ONCs. One is at a new
Hi Greenie 15 yrs on glivec, i will be 14yrs this yr (started roughly 3
yrs after dx)
Shannon
On Saturday, January 10, 2015 at 12:11:08 AM UTC+11, greenie wrote:
Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years.
Starting to retain fluid around my ankles a little but that
Richard, I am a vet and I would never go to the VA for treatment even for a
hang nail, because I have had previous dealings with them. They were
recently in the news for everything that they were not doing for most of us
vets.
When someone has CML or any other major disease then most of the
Hi Greenie,
So you have been on Gleevec for 15 years. That is something good to know
because what would you have done without Gleevec? This drug is responsible
for saving countless lives. Thank GOD it is here or you wouldn't be here
right now.
If it weren't for dialysis neither would I be here
Thank you Marty, Everything you wrote is so true about Gleevec and CML.
It's unfortunate that greed and money has to be in the equations in the
final outcome. After Interferon that almost killed me all that was left was
Hydrea. So when Doctor Tallman called me and wanted be in his study
I am my own advocate, I do have two ONCs. One is at a new regional cancer
center and i am completing 12 years of treatment with. The other is with
the VA. They are assigning me underqualified Drs. that should not be
trying to treat me, but only approving the medication prescribed by the
Hi Richard and Jeanie
I would think that they would want you to be informed. I hope your issues
resolve soon
Best wishes Shannon
On Friday, January 9, 2015 at 11:53:42 PM UTC+11, icando...@aol.com wrote:
Hi Richard and thanks for the update. My onc doesn't like for me to be
informed
to get over this rough patch. you are in my prayers and
thoughts.
Joyce in IL
Begin forwarded message:
*From: *ICANDOALLTTC via CMLHope cmlhope@googlegroups.com
*Date: *January 9, 2015 6:53:38 AM CST
*To: *cmlhope@googlegroups.com
*Subject: **Re: [CMLHope] My Update anyone had relapse
Jeannie, Please let us know how the test results came out. Thinking of you. Beth
-Original Message-
From: 'Icandoallttc' via CMLHope cmlhope@googlegroups.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sat, Jan 10, 2015 9:45 am
Subject: Re: [CMLHope] My Update anyone had relapse after 5
@googlegroups.com
Date: January 9, 2015 6:53:38 AM CST
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Reply-To: cmlhope@googlegroups.com
Hi Richard and thanks for the update. My onc doesn't like for me to be
informed either; he just ignores
: ICANDOALLTTC via CMLHope cmlhope@googlegroups.com
Date: January 9, 2015 6:53:38 AM CST
To: cmlhope@googlegroups.com
Subject: Re: [CMLHope] My Update anyone had relapse after 5 years on tkis?
Reply-To: cmlhope@googlegroups.com
Hi Richard and thanks for the update. My onc doesn't like for me
Yes, Gleevec started failing me at 4 1/2 years and I stopped treatment at
5 1/2.
Richard H.
On Friday, January 9, 2015 at 6:53:42 AM UTC-6, icando...@aol.com wrote:
Hi Richard and thanks for the update. My onc doesn't like for me to be
informed either; he just ignores what I say and goes
Congratulations on 15 years. I was one that put on 25-30 pounds of water
retention in 5 1/2 years. After I stopped Gleevec I lost the 25-30 pounds
in less than 90 days. When I went back on Gleevec in December I gained 9.5
pounds in 20 days. Let's not talk about the age thing. I am only 74
Hi Greenie and thanks.
I knew you were one of the successful gleevec patients.
So happy for you.
Blessings
Jeanie
Sent from my iPhone
On Jan 9, 2015, at 8:11 AM, Myvety2k via CMLHope cmlhope@googlegroups.com
wrote:
Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years.
Hi Richard and thanks for the update. My onc doesn't like for me to be
informed either; he just ignores what I say and goes on to tell me what he
thinks.
My uric acid was high along with my WBC and Platelets. He seemed to be
more concerned with the high uric acid--even called me on my cell
Jeanie, as of Jan. 10th I will have been on Gleevec for 15 years. Starting
to retain fluid around my ankles a little but that could be and age thing.
75 years old.
greenie
In a message dated 1/9/2015 7:53:41 A.M. Eastern Standard Time,
cmlhope@googlegroups.com writes:
Hi Richard and
WOW! Just read todays posts. I am praying for the group. I will add my
problem to the list. Dec. 30 I contacted ONC about gaining 9.5 pounds
water weight in 20 days after restarting Gleevec. His nurse called that he
was out of the country on vacation with his family. She checked with the
@googlegroups.com
Sent: Fri, Jul 4, 2014 9:41 am
Subject: Re: [CMLHope] My Update
Hi Richard and thanks for the update.
Good luck on your new move and blessing to you and yours.
Jeanie3
In a message dated 7/4/2014 12:10:52 A.M. Eastern Daylight Time,
richard1huff...@comcast.net writes:
Hi All. Just
Hi Richard and thanks for the update.
Good luck on your new move and blessing to you and yours.
Jeanie3
In a message dated 7/4/2014 12:10:52 A.M. Eastern Daylight Time,
richard1huff...@comcast.net writes:
Hi All. Just want to let yo know what is happening in my little world .
First, I
.
Blessings,
Susan
-Original Message-
From: ICANDOALLTTC icandoall...@aol.com
To: cmlhope cmlhope@googlegroups.com
Sent: Sat, Jun 29, 2013 10:39 am
Subject: Re: [CMLHope] My Update
Hi Susan and good luck to you.
Tasigna quit working for me after only a few months and I had a terrible
Happy to hear that,congrats!
Ted
On Wed, Jun 26, 2013 at 11:58 AM, Marty Gartenberg wa2...@gmail.com wrote:
YEAH!!
Looks like your an 18's
Marty
On Tue, Jun 25, 2013 at 3:15 PM, Richard H richard1huff...@comcast.netwrote:
My tests show a sharp *decrease* in counts indicating that my
Cograts TEd and Richardso hopeful, hold the fort!!! Thanks for sharing, Beth
-Original Message-
From: Ted fanruif...@gmail.com
To: cmlhope cmlhope@googlegroups.com
Sent: Wed, Jun 26, 2013 2:46 am
Subject: Re: [CMLHope] My Update
Happy to hear that,congrats!
Ted
On Wed, Jun
My tests show a sharp *decrease* in counts indicating that my Gleevec
vacation is going to continue. I will complete my 5th year off Gleevec
next week. I will be testing again in December. I will be able to
complete 5 ½ years off Gleevec. YEAH!!
For those still struggling with
.
1:5
-Original Message-
From: Richard H richard1huff...@comcast.net
To: cmlhope cmlhope@googlegroups.com
Sent: Tue, Jun 25, 2013 3:15 pm
Subject: [CMLHope] My Update
My tests show a sharp decrease incounts indicating that my Gleevec vacation is
going to continue. I will complete my
YEAH!!
Looks like your an 18's
Marty
On Tue, Jun 25, 2013 at 3:15 PM, Richard H richard1huff...@comcast.netwrote:
My tests show a sharp *decrease* in counts indicating that my Gleevec
vacation is going to continue. I will complete my 5th year off Gleevec
next week. I will be testing
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