Chronic Myelogenous Leukemia (CML) Support Group

Chronic myelogenous leukemia affecst the balance of blood cells in the body, disrupting the normal balance. The cancer cells eventually begin to outnumber and push out the good cells, and could lead to anemia and easier bleeding/bruising. If you or a loved one is diagnosed with CML, this is the community to discuss your experience.

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/ Chronic Myelogenous Leukemia (CML) Support Group

side effects and getting off of Gleevec

coachricky1
coachricky1

Diagnosed 9 years ago and put on Gleevec.  Been in full remission per the fish text for a few years now.  I'm 51 years old male and wanted to know 2 things.  Are these side effects of the disease or medicine and should I try getting off of Gleevec.  My body hurts daily like having the flu.  Vision has decreased, memory is bad, muscles hurt, cramps, tired, getting out of bed hurts but body aches less after I get going, low motivation to do anything.  By the end of the day, I can barely make it up my 3 steps.  My legs and feet hurt too.  Am I just getting old or are these side effects?  Any chance of me qualifying for Social Security Disability benefits?  My Dr.  has been asking me for a year to let's see if I can maintain remission after getting off of Gleevec.  He said that 50% that try it get to stay off it.  I finally gave in and said ok.  Been off a week now. and have check up in 3 weeks.

jimmel
jimmel
Hi, Glad to see ur message. I have been in accident 13 years ago and piece of head missing now. Pain in lots and not much left inside my dumb head. And I my scoliosis went nuts. I was having siezures once or three months. Until depakote and marij . Then last summer got leukemia cml. And pain got so intense from cml. The gleevec is working. Have things are better every other day, with marij
wombat7
wombat7
A lot of what you list are side effects from Gleevec.
Good luck with the stopping, I've been off Gleevec for over 3 years now and still maintaining a negative PCR. If it does come back and you have to restart a TKI you could try a dosage reduction once back to negative. I went down to 300mg Gleevec after a year of PCRU and there was a noticeable difference in side effects.
MrGleevec
MrGleevec
Had been off gleevec for months (due to in between jobs and no insurance coverage), doc told me I have high red blood cells, that I need to get back on it and stay on it. Once in a while red cells goes up and I need phlebotomy. Been experiencing the same symptoms you have, no I do not think it is due to old age ( I am 53). Also spasms all over is a killer.
wombat7
wombat7
Have you tried magnesium supplements for the muscle spasms, it works for a number of CMLers. The one thing that worked for me was celery seed.
coachricky1
coachricky1
Just got back from appointment and my blood work was still normal (Praise God). So, I guess I've been off Gleevec for about 6 -7 weeks. That's the update. thanks for your prayers and will touch back in 2 months after my next appointment/blood check up.
wombat7
wombat7
Great news, fingers crossed the zeros continue. :-)
coachricky1
coachricky1
Well, it's been a year and a half, and I'm still off the Gleevec. Ran out of insurance and haven't been to the Dr. in over a year. The few times that I did go back, all was well. I'm still having all of the same side effects which may be from the illness????(not the medicine) I've applied for SSD a week ago... Hope that I can be told yes. Your prayers will be appreciated.
coachricky1
coachricky1
Just an update.... After losing my job and insurance, I informed my Dr. that I wouldn't be able to continue. I haven't been to him since then and I'm off of Gleevec still. Symptoms for the most part have gone away. Thank you for any prayers sent for me. I'm feeling fine and haven't been to the Dr. since I quit. God bless all of you. Jesus is the reason for this season.
coachricky1
coachricky1
6 years off of Gleevec and doing so much better. Had to quit my Dr. and the meds. Many days in a row, I forget about all that has happened. Doing great. There is reason for hope. Jesus is the reason for "This season".