Sorry both you ladies are having a bad time on Sprycel. All I know is for now, it is working for me. We all have crazy side effects and I am thankful I don't have to work now, but I do keep busy. I'm getting ready for a knee replacement, my second but not until recently have I felt more stable to attempt surgery. I use to go to the gym and ride the exercise bike, row and walk 3 days a week, which kept my pain down as well as my fatigue. But my knee got worse and I am so ready for surgery. The cortisone shots helped these 2 1/2 years so I could have a life, but I feel I need to get the knee fixed (my 2nd one) My last 2 BCR-ABLs were 0.0032% and labs are all stable. So it's now or never. Certainly better than my first year on Imatinib so I will stay on 80 mg Sprycel as long on I don't have heart issues. Keep in touch with me and let me know how you both do.

I too am on sprycel always tired and head aches again light headed and dizzy. Heart issues as well. Was taking 100 mg they took me down to 80 doing better just tired a lot here lately. Kinda suck just keep pushing through it God bless

Julie, I will be traveling again to North Carolina at the end of September, if all goes as planned. I had a family death and flew to Charlotte in April and stayed two weeks. I talked precautions especially on the plane. Finally I have given in to taking a wheelchair from check in to the plane. I just can't walk the distances and am now comfortable doing this. I wear my mask in the airport and take my own hand sanitizer with me and to wipe off my seat and surroundings. Traveling is not as easy as it use to be, but I will travel as much as I can and I do feel safe. I also have my Dr. give me a script for blood work while away in case I have a problem. They will fax results to him if needed. So our life has changed but there are still ways to do what we want. Talk to your team and see what they say about traveling.

I’m so happy your numbers are in the negative! Sounds silly, but what is ur bcr? I also was on sprycel for the first year 100 mg and like you said immense pain and fatigue, and heart conditions. I was lowered to 50 mg because it was working so well but now not so much . My levels are barely going down and at 50mg I still feel the pain and fatigue and stomach issues. I’m like you, if it’s working don’t take me off of it. I’ll survive the side effects hopefully. But now numbers don’t look so good. Please keep in touch. Take care. Thank u for responding.

Hi Taraharvey100, We have been on Sprycel both almost 2 years 5/23. My 2nd TKi was Sprycel and started at 100 mg. I really had an up and down year with 100 mg and my Dr. was not happy when we had to reduce it to 80 mg and fought me. My biggest SE were terrible fatigue, no n/v but terrible feast or famine problems but the worse was bone pain. But I have grown accustomed to them and as my BCR-ABL is now negative for the last 3 months, knowing that the Sprycel is working can take the bad days with the good days. Dr has switched me to 80 mg every other day and labs are so much better and I feel like a human again. So for now the Sprycel is working for me, feeling better and able to do more and taking the more good days with the not so good days. Dr. says if I ever have to change he will use Scemblix. Lots of others with CML on this site are taking this with less SE. I wish you well Tara, please let me hear back from you as you go forward in treatment.