Posted 26 December 2017 - 12:26 PM
Trey, I wish I didn't know you or have any desire to check this web-site three times per day but I do. I was diagnosed a year ago and I have peace of mind that something else will probably kill me but not CML. What I want to say is THANK YOU!!!!!
While I have a great Doctor, I only get so much "face time" with him. The big issues have been dosing and coping with adverse events for which this site has been invaluable. I am looking forward to my daughter's wedding in Sweden in June, enjoying my two grandchildren and enjoying my wife. Trey, the amount of time that you donate to us is truly appreciated. I used to visit San Antonio twice a year assisting the "kids" at BAMC that were severely injured in Iraq and Afghanistan. These guys and gals would come back missing a leg or two or perhaps with severe burns and tell us that they would go back and do it again. My complaints about TKI side effects are fairly petty. But I wouldn't be able to handle any of it without this group and especially with the sound knowledge that you obviously possess. May your New Year be Happy and Healthy!
Diagnosed Dec 27, 2016 started Sprycel 100 mg Jan 7, 2017. Initial PCR 77.9 after 30 days 28.4, day 79 1.4 and day 115 0.1%. That is a 99.9% reduction! Sprycel 100 mg for 3 months, 80 mg for 1 month and now at 50 mg. Hooray for Sprycel!!! PCR June 5, 2017 0.04! Dose reduction to 40 mg 6/15/2017 due to shortness of breath. 20 mg as of June 29th. PCR .02 9/11/2017. PCR .015 IS as of 12/11/2017. Lungs substantially better. Low dose Sprycel works!
Adverse Effect - At about week 6 of Sprycel sharp muscle pain that would start at 2 AM and last for about 4 hours. This lasted about 4 weeks and went away, thank goodness.