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Update on side effects from Sprycel

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First, thanks for all the feedback from everyone.  Side effects are: shortness of breath, heart palpitations (minor) itching (major) and chest pains (worse at first then fading to almost never after 2 months).  The list of potential remedies from member on this site: (change diet, sleep more, take vitamins (k2 and D), weight training, Pilotes, Tai Chi, Magnesium supplements in myriad forms, Metroprolol, Verapanil, Proporanolol diprobase and HC45 (for itching)!  

Second, I am moving onto drug #3 (only 3 months into this journey) Nilotinib 2x 150mg daily.  Maybe this one will have the least side effects.  

Third, 3 month results are back and when first diagnosed in August 2019 I was at 62% bcr/abl in the blood, body has responded well to Imatinib then dasatinib despite the side effects and now down to 16%! 

I recognize there is along way to go still and a lifetime of learning - thanks to this site and the encouragement and stories its easier learning how to live with CML.  

I recently read a post from a young woman, 28 who has had a hell of a time dealing with her early stage of this disease and my heart breaks reading about her pain and suffering.  I hope she knows that there is an army of people here pulling for her!  Praying and sending positive karma...

 

Do you know why they decided to start the dosage at 150mg twice daily?  I’m currently on 300mg twice daily and from what I have read that 600mg daily appears to be a lower dose than normal.  I currently have a few issues (mentioned on another post to you) and wonder if 300mg daily would help reduce the problems? 

My doctor (head of the Leukemia dept. at Hopkins) seems to think I respond well to these TKIs (despite the side effects) and he favors the lower doses to reduce the long term cardiac and other more dangerous side effects apparently.  His experience over twenty some odd years is that in the earlier days doctors favored heavy initial doses but apparently this was't necessarily warranted and so he told met that 10% of his current 20 CML patients have developed cardiac related issues - both had prior diagnosed cardiac issues and both were older and obese.  I will ask him about it again and come back with what I learn.

Thanks for the reply! 
the current 600mg daily has today broken me.   Struggled to even slow jog short distance and breathlessness walking, this cannot be normal!  The only reason I’ve been moved onto different meds is due to the problem with side effects not a lack of response to the condition.