Hi All. I just found out this week I have CML and am still processing the news. I am in my late 30’s and otherwise very fit and healthy so this is a total shock to me. I’m really nervous about going on desatinib in the coming weeks given the fact if no one told me I had this I wouldn’t think anything is wrong. I was just wondering, did any of you go on desatinib and not really experience much change in the way you feel and your lifestyle? In the back of my mind I’m hoping that’s a possibility but then I read all the horrible side effects and I am terrified. I’d love your feedback on actual real lived experiences with this drug while being otherwise (relatively) young and healthy.
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Just diagnosed this week, wondering about side effects of desatinib
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Hi Kathrynk!
I am 36 years old diagnosed before 4 years and I am on Sprycel since then! I am fit enough I will continue to be! And You should do that! It is good for your body and your mind. I do not have a single side effect. A side effect that maybe you will have (or maybe not) is pleural infusion and a way to prevent it is guess what... Excersise! On high intensity is evem better.
What dose do you take? How do you feel?
Hi,
I'm 45, diagnosed nearly 3 years ago. Started on imatinib but response was sub-optimal so I was swapped to sprycel 2 years ago. Since then I've had a much better response & feel great most of the time. I work full-time in a pretty demanding job, have 2 young kids, exercise lots & I keep well. Such a discombobulating experience in the early days but I've made my peace with it & overall I feel lucky with my lot in life. The only symptoms that I am aware of are some tiredness & finding it harder to fight middle-aged spread but these symptoms could be much more to do with being in my mid-forties than CML or sprycel!!
Based on my experience, I recommend that you be kind to yours,elf, understand that it will take you a while to settle into your new normal & keep a close eye on this forum (really helped me feel less worried & alone). When you feel ready, do some reading - The Philadelphia Chromosome by Jessica Wapner is informative, uplifting & inspiring.
My experience is that life on Sprycel can be completely normal. Please take one day at a time & don't worry.
Victoria.
Thanks for your reply! That’s really great to hear. I haven’t started the medication yet, they’re still finishing all the tests but I expect I’ll start in the coming weeks so not sure what the dose will be yet. I’m worried about it making me feel unwell when I feel totally fine now, and the fluid issues of course are quite scary. Thanks for sharing your experience !
Thank you Victoria!! I appreciate you sharing your experience, that gives me great hope. I think I’ll definitely keep across this forum, already it’s making me feel less alone. I’m also conscious to not read too much online and take each day as it comes until I get all the info. It’s also a bit of a shock as I was trying to get pregnant as well and that all has to stop, at least for a while and maybe forever. How long did it take you to adapt to the new normal once you were diagnosed?
Hi Kathryn, I was diagnosed a year ago at 29. It was a shock to me as well (especially since I had lost health insurance four days before but that’s a story for another day).
I haven’t had many changes in my lifestyle since diagnosis except I can’t get pregnant of course. The first two months were rough because my platelets were under 50 for a few weeks and my hemoglobin dropped to about 7, but I never received a transfusion. Once my CBC normalized my life became pretty normal. I sometimes feel more fatigued but on the whole the Sprycel side effects are small for me. I still run 2-3x a week and before COVID I was lifting 2x a week. I still travel wherever I want and I’m taking scuba lessons as soon as this is over. My life hasn’t changed much except for daily medication, consistent but not constant worrying and more frequent doctors appointments.
I am 54 and I was diagnosed with CML (Advanced Phase) on Sept 2019 and have since been on Dasatinib.
I have also achieved Cytogenetic Remission in Feb/March 2020 and have commenced back at work in March. I think side effects will depend on individuals. For me, mainly some minor rashes on and off, slight fatigue and minor pimples over the scalp. Apart from these, I am same as what I used to be before diagnosis. However due to stress from work, I might consider stopping work to rest completely and do more exercise. For you, you are so young, I believe you can overcome it even better. All the best in your treatment.
Hi,
I'm sorry to hear you've been diagnosed with CML but hope you can take comfort from the stories on CML Support. I'm 32 and have been on Dasatinib since I was diagnosed at 21. I received Dasatinib as part of a trial back in 2009 and have responded well to the medication. I noticed that I was slightly more tired but with regular reviews I have been able to reduce my to medication down to 20mg and the tiredness is much better now. Overall I am able to work and do all the things I did before CML so I hope that is reassuring for you to hear. Hope all goes well for you and just let me know if you have any questions.
Wishing you all the best,
Clare