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About to start 100mg desatinib and worried about side effects, exercise and work!

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Hi everyone,

I’m about to start 100mg of desatinib next week after a recent diagnosis. I am 38 and very into fitness and health. I workout almost daily (running and relatively intense fitness classes) so I’m really scared how this is going to impact me.

 

I also was diagnosed quite early and have low counts (sorry my exact numbers elude me right now). They were low enough that I was able to stay untreated for 6 months while I pursued egg freezing for a future pregnancy (hopefully) so after reading a lot of info and this forum I feel like starting on 50mg might be better to reduce side effects and allow me to keep training while still hopefully getting to the optimal levels.

 

Sorry, I know this is a lot of info about different things but I’d love any support, advice or experiences out there. I have this deep hope that I just pop the pill with my morning vitamins and I don’t even notice that I’m taking it. Does anyone actually have that experience where other than the routine of taking medication daily there is no real side effect or difference?

Thanks again all, I hope everyone is well!

 

-L

Hi Lavinia ,scroll down to Switching from Imatinib to Sprycel under the name Felix ,that's me .It was my experience ,get back to me with any questions will be glad to try and help ,Denise.

I’ve tried four different TKIs over the last theee years, including Dasatinib and in all four it was  my red blood cell count stayed pretty steady. Red cells transport oxygen around the body, so if you’re able to exercise without shortness of breath and muscle fatigue at the moment  then it’s unlikely that will change much. Hope this helps 

Hi Lavinia,

People have different reactions to the medication. Loads of people just pop their pills down, and go on with their life pretty much as normal. They don't tend to post on CML forums so much because they have no real need to. So you should have every hope this could be you too!

Personally, I found dasatinib made me quite fatigued but that's been helped by dropping the dose down over the years. There's some evidence now to suggest that the "starting dose" of 100mg could be too much, and that 50mg is more appropriate. Your doctor will not be likely to be amenable to that at first, but if you respond well initially that's a conversation you might want to have in time. 

David.

Lavinia - To your underlying question, does anyone get back to normal and just take the pill and go on as before:  Al-l-l-mo-o-ost.  Almost normal.  The cliche "new normal."  I had a very, very rough start, with imatinib, 11+ years ago.  Switched to dasatinib (but many others have had the opposite switch, or switch to another drug altogether) and have pretty much sailed home.  There is still fatigue.  I have minimal residual pleural fluid that does not bother me or concern the docs.  But I have no aches and pains, no cramps, no GI stuff, no headaches, nothing to remind me I have CML. It changes you, though, won't lie to you there.  Your course will be uniquely yours, but more than likely, you'll someday reach an awareness of your good fortune in escaping the grim reaper and a new appreciation for and perspective on life.  You may very well turn out a better version of yourself!