CML Sprycel side effects

Hi @living, oh gosh. I'm sorry to hear of this development of perceptual cellulitis and that an effective treatment may be the cause. I'm tagging fellow CML members like @dmmurph @bobmon @ortina2023 @quita123 @pam62 @suzie71 @ericloomis @kimmy5 @talmadge81, who have experience with Sprycel (dasatinib) and who may have tips to share.

@living are you still on Sprycel or have you discontinued its use to see if it is the cause of the issue?

I have not heard back from Oncology yet, I do have an appointment with infectious disease in Rochester today.

Sorry, I haven’t yet begun the clinical trial when I’ll be placed on a TKI drug. Maybe this week or next I can start, but I won’t know which of two TKIs I will be taking. It’s a blind study. I was on Hydroxyurea 500 mg 2x day until last week. So, I am unable to comment other than to say I’m sorry you’re having this trouble and I hope your doctors can help you.

hello,
i’ve been on Sprycel for 3 months 40 mg/day. i’ve had a small swelling of the upper eyelids but it’s not serious. I’ve noticed hair thinning. But nothing else so far. I was on Glevac and suffered from terrible edema so the swollen eyelids started when i was on Glevac, So can’t be sure if the swollen eyelid started. I hope it all works out for you and I’ll pray for you

Hi: I was on Gleevec for 18 years, and I lived with the real bad oribital edema of my eyelids. My whole face looked swollen. Everything else was manageable, therefore, I stayed on it without missing one dose. I am so glad I stayed on it, and I did not care what I looked like. I started on the Gleevec through the clinical trial back in 2000, and by 2002 my pcr was 0.000. I stayed on until Feb of 2018, and then my doctor told me to stop all treatment with constant monitoring to see if I could still maintain my response. Next month will be 6 years that I have been TFR, and I still pray everytime I have to get my test. I get tested in Feb to see if I got to the 6 year mark. I was told if I have to go back on a TKI that it would not be Sprycel due to it causing pulmonary edema amongst other parts of the body. I would have to start Tasigna.

I hope you find the cause of your edema. These TKI drugs do a great job, but they do have side effects. I feel as long as they are not life threatening then we should do what we have to so the cancer cells are destroyed. You might have to go on a different TKI after all your testing is complete to find the cause of what you are going through now.

Two years ago I was started on Sprycel for first 4 months after diagnosis. I lost a lot of hair, my head itched badly constantly, my skin was blotchy and pimpley and itched - and I was tired all the time but couldn't sleep because of the side effects. Oncologist finally put me on Tasigna. Bad side effects from that until I couldn't take it any more and after doing a lot of research about overdosing told him I was going to lower my dosage to half the original. He didn't agree or disagree - just shrugged his shoulders. I now look and feel great and my BCR-ABL numbers continue to go down. 5 months ago I was at 0.00040! Keep persisting and researching. I wish you the best.

Just diagnosed 4/1/25 with CML . Started Dasatinib 100mg on 4/11. Had to stop yesterday as my head hurt everywhere I touched it, massive headache, and swollen/ hemorrhaging eyes, looked like I had black eyes. Dr did bloodwork today and platelets went up even more. Will wait a few days for symptoms to subside and will restart same med but at 50mg. Anyone else have this?

Hello
I’m still on Sprycel. My oncologist didn’t see a benefit in reducing my dosage, stay on 50mg or stop. I decided to cut my dosage in half about a month ago. Some of my side effects have improved but the edema is still persistent. Swelling in my calves, abdomen, face, and eyelids. I recently had a visit with primary care and started on a dietetic temporarily to help with fluid retention and see if it would help with my blood pressure, I have some afib and misc heart issues also.
So far edema has improved in all areas, blood pressure are closer to normal, and finally able to shed some water weight.
Planning to continue with the diuretic and half dosage of Sprycel until my next labs.
I agree with others on continuing treatments while managing side effects. It is also important to do your homework, research your own health issues, and be persistent with asking questions. Being your own advocate is the best way to find solutions that fit you best.
Best wishes to everyone struggling and fighting.

Hi @galbib. Oh my goodness, that’s a horrible reaction you’re having to the meds…and frightening!
Are you feeling any better this morning?