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Hello
Chrissy and Laura Rose, I
read your posts with great interest. I have been on gleevec for 4 years
the 11th of this month. I did not have any side effects that
affected my leg or arm muscles until a year ago. What you describe is
exactly what I had. There were very few of us. The legs and arms felt
like wood. They were painful, and I couldn’t bend, stoop or get on
my knees. I had a difficult time moving around after I sat for a while. Massage
didn’t help and in fact, it hurt. I lived on Advil for weeks on end. I
was thinking I was going to have to quit work. I consulted Dr. Druker and
my oncologist and they both suggested a break from Gleevec. I took 10 weeks off
and am now on a reduced dose of 300 mg. It took 6 weeks but the symptoms
completely disappeared. I am sure it was gleevec. I did not lose my
PCR. Now, the same side effects are slowly returning, the pain and
swelling but not to the degree I had, nor are my arms and legs hard. I can move
with ease and get around really well. The pain is not nearly as bad as
well. I would not suggest this treatment unless you consult with your oncologist.
I will tell you it was scary as well. I am incredibly lucky to not lose
the PCRU. If they return again to the degree I had, I am considering asking for
a second generation drug instead of gleevec. Regarding
Tylenol Chrissy- it is suggested that people on Gleevec do not take Tylenol.
The ingredient Acetaminophen does not
interact well with Gleevec. It can cause a difference in the concentration of
gleevec. You might want to try Advil or something with ibuprofen. Barb in AZ age 55 Dx 5-5-02 100% PH + CML Hydroxurea for 6 wks 400 mg Gleevec 6-11-03 PCRU 3-17-03 Zavie’s
club #409 Mother had CLL == 1 of 3 == Date: Sun, Jun 11 2006 3:51 pm From: [EMAIL PROTECTED] Hi all, Laura Rose here -- Mom is having a problem with her muscles
-- not sure if it's CML or Gleevec related? She has to let her legs
wake up once she stands before she can walk, that is once she gets
standing. Her muscles are really hard to the touch. I felt them today
trying to massage her and wasn't sure if it was bone or muscle so had
to ask her. She is really uncomfortable. She was hoping it
was temporary, but it is not getting better. She is going to contact MD docs
and Mayo to see if they can help, but I thought if anyone else was having a
similar problem they could give us a heads up. Thanks a bunch, Laura Rose Mother Dx 2001 - on gleevec Zavies club #70 Alicen Rose cord blood saved 06/04 == 2 of 3 == Date: Sun, Jun 11 2006 4:04 pm From: "Chrissy" Hi Laura, I am 24, I was diagnosed 14 months ago. I have been on
Gleevec all that time, and I went through a terrible time with my
legs. It wasn't just that they hurt all the time, but sometimes they felt
restless, too. One thing I found helped was lots of time in the
lazyboy and lots of heat applied to the worst areas. A really effective
heating bag can be made with horse oats and flannel. Just make a bean
bag out of some old flannel and fill it almost full with horse oats. If
you go to an animal feed store, they should know what you're after.
Sew it up and throw it in the microwave for a couple minutes. It's
like a cheap magic bag. It can be washed, as water won't affect the
oats. They smell a bit funny but can be reused as often as you like and
provided me with LOTS of relief. I used tylenol most nights for
quite a few months, but that might not be recommended for everyone.
I've noticed a big improvement in myself since January (after 9 months of
treatment). Although I had a hard time walking or kneeling (I couldn't
even fully bend my leg!), I am doing a lot better now, so much, in fact,
that I can do anything I used to be able to do. Even my muscle
strength, which I lost a great deal of, has returned. Best of
luck and best wishes. I know it is trying at times but it will get
better!!! Oh, and to answer your question about bone or muscle, it's
probably both...at least that's the way it seemed for me. One
more thing you could try is a hot bath, just make sure there is something
comfortable to sit on if need be! Take care!!! All the best, Chrissy --~--~---------~--~----~------------~-------~--~----~ [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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- [CMLHope] Hard Muscles,pain and loss of mobility -Chrissy... Barb Stanley
