Hello Everyone,
I am very happy to have found your site. The LLS site had been so helpful because together we have a wealth of knowledge and sharing gives us all a much better understanding of how to deal with all aspects of CML.
Here’s a brief history:
I am a Marine Corps veteran who was involved in the toxic water disaster at Camp Lejeune, NC.
Diagnosis of CML confirmed in April 2014 after a bone marrow biopsy.
Started treatment with Sprycel 100mg, Developed painful blood blisters in my mouth with a host of other side effects. Dose was dropped to 80, 70, 50,20 and then 20 mg every other day up to January 2017.
I reached PCRU in July of 2015, maintained until January 2017. My most severe side effect has been a recurring pleural effusion which caused a major problem with shortness of breath and has been treated from March 2016 to the present by having catheters implanted first on the ride side and then on the left side allowing me to drain at home together with weekly thorocentesis at the hospital. Eventually one side of the pleura became loculated and only a small amount of fluid remains.
My oncologist decided in December 2016 to switch me to Gleevec 400 mg to alleviate the pleural effusion. Immediately, I experienced full body edema along with the daily 1000 ml of fluid from the pleural effusion. After 40 days, my oncologist said we should take a three month “vacation” from the TKI’s. In April my BCR-ABL was 0.039 and in July 0.044. Oncologist started with 20 mg Sprycel in March then raised it to 50 mg in July. Breathing issues were continuing to worsen.
Opted for a new oncologist who immediately switched my medication to Tasigna 150 mg. I’m back to PCRU and feel much better. The pleural fluid fluctuates between 450 ml and 800 ml on a daily basis so I can breathe much easier. Hoping this continues to lessen.
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Still concerned about the QT Prolongation side effect because of my cardiac history, but my oncologist, cardiologist and cardiovascular surgeon are monitoring closely.
Other major side effects are Reynaud’s syndrome, one time severe rash treated at the ER and ocular ischemic syndrome.
I am grateful for the development of the TKI’s which can control CML but am hoping to find a balance with the least amount of drugs and less debilitating side effects. I’m sure that is a very common wish for all of us. Here’s to our success! Any and all comments are cheerfully accepted. Looking forward to good discussions.