I also have kidney disease. I have been on Gleevec since Jan. 2001 (300mg
daily). I have occasionally had swollen legs, but no one ever indicated that
it might be from Gleevec. I have never had the burning either. SO SORRY you are
having this problem. I hope they find the cause soon.Wishing good things your
way.Angie
From: sherri swanson <swanson.sherri...@gmail.com>
To: cmlhope@googlegroups.com
Sent: Tuesday, March 1, 2016 9:18 AM
Subject: Re: [CMLHope] Re: Hey, what happened to everyone?
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 <norm5...@hotmail.com> 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 not had any shots in my eye for
almost 6 months. Still legally blind and that will not change during my
lifetime I suppose.
I have been playing a lot of golf with my younger brother and we are having a
great time together. He is a good brother that will come and pick me up and
take me golfing even if it means spending the whole day with me. Life is good.
This past December marked 11 years that I have been on Tasigna. I have never
been undetectable but it is generally only a few cells in 10 thousand.
I will try to check in more often but life has been keeping me so busy.
Blessings to all
Norm
On Monday, February 29, 2016 at 9:00:33 AM UTC-6, wa2yyx wrote:
Why the silence? I miss everyone.
18's,
Marty
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