I'm looking for feedback from those of you who have been on Sprycel 2 yrs or longer. I'm trying to figure out if side effects change over the longer-term. I've tolerated 100mg Sprycel daily, fairly well, however now 2 yrs in to it, I am really struggling with fatigue and brain fog. Anyone else have more fatigue as time goes on? I thought we were supposed to get more accustom to the side effects as time goes on? Or should I not assume it is the Sprycel?
Sprycel 2+ years
Posted 25 May 2013 - 09:16 AM
Hi! I thought I'd give answering your question a go.
I've been on Sprycel 3.5 yrs. The switch from Gleevec occurred due to severe liver toxicity. My issues with Sprycel happened at the very beginning and after 5 months I began tolerating it well. I was MMR after 8 months. So, I was surprised to develop a grade 3-4 pleural effusion after 2.5 years. I took a 2 month break in which I lost CCYR and started back at 50 mg. I've now been at .2% IS for the past 9 months. Very frustrating not to get that .1 for MMR again.
My experience with the two TKIs I've been on is that I appear to tolerate them well, until all of a sudden I don't! I can generally do what I want. I'm not a highly active person, like Marnie, who is also experiencing some issues with Sprycel after 2+ years, so it doesn't really affect my daily living.
Did you start with Sprycel? There is nothing wrong with trying another drug to see if you feel better on it. You can always return to Sprycel if it turns out you toleratr it better than the others.
"You can't change the direction of the wind but you can adjust your sails."
DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>
Posted 26 May 2013 - 08:20 AM
I've been taking Sprycel for almost two years. I'm in my early 60's. I too am curious about the effects of Sprycel on the rest of my body - both short and long term. Fatigue comes and goes in my case, but I'm now thinking my fatigue is due at least in part to weight gain. Water retention has been a problem for two years and I think at least part of the weight gain is water weight. I really have to watch my salt and water intake. I take Lasix as needed and that helps. Possibly Sprycel related joint pain (especially knees) works against me getting the kinds of physical activity I enjoy (which also contributes to the weight gain). A vicious circle. Don't know how much of the joint pain is Sprycel related. Maybe some, maybe none.
Can't say that I have much brain fog, but I suspect what I do have is more a function of aging and/or genetics.
I've brought the fatigue and joint pain up with my Doc (who I like a lot) and he said that my response to Sprycel has been excellent in terms of controlling my CML. His suggestion was to not make a change, adding "why take a chance that another drug may not do as well against the CML"?
Have a nice weekend...
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