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CML Sprycel side effects
I have been on Spycel for 5 plus years and from a treatment perspective responded very well.
Recently I have developed issues with perceptual cellulitis. Bacterial skin infection involving the eyelid and facial area. So far no one has isolated the cause. I am on my 4th round of antibiotics since October 23, has been very persistent in reoccurring. I have seen multiple primary care, ophthalmologists,ENT, dermatology, CT scan, next stop infection disease.
Oncology thinks maybe a result of my treatment plan. Has anyone experienced anything similar?
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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.
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1 ReactionSorry, 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.