Help!!
I am taking sprycel (desatinb) and have only, uuntil recently, had minimal side effects such as water retention and skin rash. But lately it has been getting so much worse! I wake up almost everyday with really bad headaches and that stick around almost all day or until I take medicine. I am also very fatigued. I feel hungover everyday! Does anyone else experience this or have any remedies or advice?
ALSO a side note, I have gained nearly 20 pounds since beginning treatment, anyone else??
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Hi Sara
My husband was only diagnosed last Sept and has been on Sprycel since then at 100mg. There are others on this site way more experienced to offer advice than me but from what I have learnt on our sprycel journey so far:
may help to take tablet in eve ( my husband takes it around 7 immediately followed by dinner). he is normally asleep by ten so sleeps thru most of immediate side effects
the only times he gets headaches and nothing like you describe, luckily for him, if he doesn't drink a gallon of water during the day
it feels from our albeit v limited experience that the side effects of sprycel are cumulative so may increase and develop the longer you are on the dose. is there a chance you can reduce your dosage if sprycel is working otherwise? lots of research now with patients starting on 50 mg and doing well and Scuba who i am sure will post here is maintaining pcru on 20mg a day
Many here are helped by taking vitamins and supplements such as magnesium and curcumin.
best of luck , louise
Water retention and gaining 20 pounds, could mean something.
These things coupled with shortness of breath may mean
that you are having toxicity to the dasitnib. I hope you are seeing
a Oncologist that is familiar with these side affects.
As for the continued headache that last all day this also can support
these toxicity side affects. It could be nothing. Or not.
Most people get a “Chemo Fog”, or Chemo Brain taking TKI’s.
This is more a transient twilight that makes folks want to just sleep it off.
I call it fatigue. It’s not a headache condition.
We all get skin rash with Sprycel. Your skin will loose some elasticity.
It gets real itchy. It’s a bummer!
Take care of yourself.
Romo
Hi, Sara!
You are having a time of it aren't you? I've been taking Sprycel since 2009 and while I hated it at first, after 6 months or so I started feeling so much better. I don't think what you are putting up with is a good thing. I wonder if you should be talking with your physician about a dose reduction? I started on 100 mg. but developed a pleural effusion about 2.5 years in and after that resolved my dose was reduced to 50 mg. That was in 2012 and I have been at that dose ever since. It took awhile but I have been undetectable for about 3 years.
A weight gain of 20 lbs can put a stress on your heart and since it is probably fluid there is not much you can do about it in terms of diet or exercise. Have you asked about a diuretic to see if that will help? The headaches can also be related to the fluid retention.
Skin rash also seems to predispose those of us on Sprycel to pleural effusion so keep that in the back of your mind if you experience shortness of breath. The effusion does not have to be large to affect our breath.
This is not normal, please speak to your physician about a Sprycel break and/or reduction as soon as you can. Good luck!