I was diagnosed 3 1/2 years ago at MD Anderson. Lowered from 50mg to 20mg of Sprycel in Jan 2018. I asked my Dr if I could stop taking it altogether. He suggested I don’t but said it was up to me. My question is, has anyone tried taking it every other day or cutting it in half? My levels have been really good ever since the beginning. My last PCR was 0.03. Would love to hear thoughts. Thanks!
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10 mg Sprycel?
You should stay on 20 mg until your PCR falls below 0.01% (M.D. Anderson scale) at a minimum. And remain on it for two more years before trying to stop altogether. Interesting they lowered your dose from 50 to 20. Was there a reason they gave you why you were lowered? (I have a suspicion since I was lowered to 20 as well)
Hi! Thanks for responding! I asked if he could lower it from 50mg to 20mg since my numbers were so good and had been good from the beginning. My numbers continued to stay low so he allowed me to stay on 20mg. I have my blood work done locally every 3 months. I live on the east coast so the trips to Houston were getting expensive. Dr Kantarjian said it was ok to see my local oncologist. I didn't like the way the Sprycel made me feel, however I'm very, very grateful for the drug! I'm now 60 so the joint and muscle aches and tiredness are very hard. I could tell a little difference when I went down to 20mg. When I was younger, exercise always made me feel better. That's not the case now. Exercise just makes me tired :0( I'm still trying though. I'm so glad I found this forum. I can relate to so much that is shared. Hope you're doing well!
Consider adding some magnesium to your diet (I take supplements) for general muscle aches and pains and for good sleep. I also take a B+ vitamin along with extra B12 now and then when I am feeling 'tired'. It helps. I'm especially taking it along with iron now that my fast is ending (have to help those blood cells grow!)
Thanks! I take 400mg of magnesium every night and have for years. I take Vital Plan's Prevention Plus which has lots of vitamins and 200mcg of B12 and another 100mg of magnesium. I also take from Vital Plan, Adaptogen Recovery, Joint Well (mostly for the glucosamine), Advanced Biotic and Krill Oil. I've been taking these supplements for years..... way before I was diagnosed. I drink at least 70 ounces of water a day and rarely drink a soda or sweet tea just as a treat. I also had breast cancer 11 years ago and no signs of it since. For that reason, I think, my oncologist said not to take iron supplements. I can double check on that. I do love me some pickled beets but having a hard time finding organic ones. Probably 95% of what I eat is organic. I do eat a lot of salads from Panera. They aren't organic but I guess they're close. Any other suggestions? I've decided to start a smoothie diet for as long as I can stand it. It's organic vanilla protein powder, organic green superfood and organic blueberries. I need to drop some pounds and feel better. I hope this works!