A quick recap and then some questions....
12/17/20 BCR/ABL 40.07 (initial diagnosis)
4/16/21 1st PCR .1508 = MR 2.82
7/8/21 2nd PCR .0112 = MR 3.95
This leads me into my observations and questions. I am 43 and a firefighter that stays relatively active on the job, working out, and around the house. I feel like I am having a good response to the medication partly based on some stories I have read about on this forum and others. I have noticed a few things that bring me concern on my dosage. In May I went to my ranch (I live in Texas) and got some bug bites, Chiggers to be specific. It is now mid July and they have not healed. My experience in the past is that these bites would heal in about 3 weeks. I had an appointment yesterday with my oncologist to go over my most recent PCR and she was very pleased with my response. I brought up the bites and her remark was "I bet they hurt, they aren't healing because of the TKI." This is concerning because if these aren't healing on the outside of my body, I can only imagine what is not healing on the inside of my body. I requested to decrease my dosage and she agreed. She decreased it from 100MG to 80MG. This is a win but to be honest I was hoping for 50MG. I mentioned this forum and Scuba and some of the research he found on dose reduction. She said it is common for patients to know the disease better than oncologists after being treated for a number of years and if I could provide her with some information she would look at it. This is where I need some help. This forum does not allow me to search just threads from Scuba or others that are more active. If anyone can site a study specifically about SPRYCEL dose reduction, that would be most helpful.
A couple of other comments about my results. Based on some readings of this forum, I have started fasted workouts. Scuba posted a theory that fasted workouts assist in making the leukemic stem cells in the marrow more active and with the TKI in your system, this would allow for the medication to work improving the outcome. I eat dinner around 6-7, I am up at 4am at the gym by 5 and do 30 minutes of intense cardio followed by 30 minutes to and hour of weight training. Sometimes I do cardio for an hour and 30 minutes of weight training. This works out to be an average of about 11 hours of fasting followed by a workout. I have done this for 47 days. I do not know if it is a contributing factor but thought I would share it and let you make your own decision. It has certainly had an impact for me from a mental perspective.
Good feedback lifts my spirits. Post links to anything regarding SPRYCEL dose reduction. PubMed was specifically brought up by my oncologist as something she would look at but I will read all reputable links you comment with. I am really pushing to go down to 50MG and she seems open to it. I went to the ER in May with a colon infection. It was extremely painful. A subsequent endoscopy and colonoscopy showed ulcers which are the oncologist feels were previously existing but the TKI is furthering the problem. I really want to decrease the dose and hope that if I can present my case well enough, I can get it accomplished.
Thanks in advance for replies and assistance. I will need it to get this done in a timely manner.