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It's been 2 years on gleevec


Hi All,

i first posted on here in 2015 after my dx of CML. I was started on sprycel and while my numbers went down well the side effects on bone pain muscle pain joint pain and headaches were unbearable. I switched oncologists. They changed me to gleevec. I did well felt great for about 6 weeks, two of which I wasn't taking meds then 4 weeks newly starting gleevec.  Everything changed after that! The headaches came back, the sinus inflammation started. Eyes swell off and on when I get the headaches n sinus pressure. When these symptoms stopped I began getting HORRIFIC leg cramps. They woke me every night for months. They're not as bad recently, but now I have severe joint pain. Knees, elbows, wrists and hips. I'm exhausted ALL of the time and depressed even while taking antidepressants. I am still working by the grace of GOD. I don't want to stop working, but I miss so much time from work that I feel bad for my colleagues! If I change to another TKI will this happen again? I do walk and stretch. It helps minimally. I drink plenty of water. Can I get some feedback from others? Are you all working? How is your quality of life? I'm 58 and feel like 108!! 



Hi Barb,

You might try going back to Sprycel at a low dose if your numbers are good.  I'm taking 20mg per day, so far it's been working better than imatinib did.


Hi Kirk,

ill talk to my oncologist about this. Thanks SO much for the reply!


My one on one support survivor contact who has been on gleevec 17 years drinks pickle juice for the cramps.  When she travels she gets leg cramps and then she eats mustard packets.  Says it makes her cramps disappear.   Sorry, that is all I have on gleevec.



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Please advise