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spyrcel side effects

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Hello everyone, I hope this thread finds all well. My son who is 25 that has CML, he was diagnosed at 18. He has now been on spyrcel for 2 weeks now. He failed Gleevac after the first year and has recently failed tasignia. I believe that is bc he wasn't taking it like he should. But that's another story. My question is, he is having severe stomach pain along with nausea and diarrhea for 5 days now. I know from what I have read that it is a side effect. But has anyone else experienced this with this medication and will it subside or will this be chronic for him?

Thank you for your responses and God bless you all.

 

Lisa 

Hi Lisa,

The bit you say that he's not taking it as he should is a little concerning. Can you expand upon that? It's vitally important to ongoing health that these drugs are taken properly.

In terms of side effects, they certainly can go away after a while. But that doesn't always happen. I take sprycel too, and it gave me a very dodgy tummy for the first little while but it has since settled down. It's still not perfect, but nowhere near as bad as it was initially. You also work out ways of dealing with the side effects - for me, taking sodium docusate help 'move things along' and 90% of the time that sorts out any problems I have.

Since Sprycel can be taken with or without food, unlike Tasigna, has your sun tried varying when he takes his pills to see if that makes a difference?

David.

Hi, Lisa,

My friend takes Sprycel for a little more than two weeks now. He has nausea and could not  eat properly. As a result, he has lost 3 KG... Wee hope that it will disappear with the time. 

At least, we are not having more serious side effects. Let us hold onto it.

Thanks for sharing

Laura

Hi Lisa,  I am sure the side effects will subside eventually. Maybe your son needs to know how TKIs actually work - you have to keep the plasma level of the drug (whichever one it is) constant, this is why it is imperative to take the drug at the same time (more or less) each and every day. If you feel that he is having issue with being adherent then you may want to have a conversation with him about the consequences. It is really difficult for younger people- especially those of your sons age - to be adherent. I think it might help if he understands the how and why, he will be more likely to take responsibility for his own health and the achievement of an optimal response. 

I hope you can help him with this- otherwise he does risk a suboptimal response and possible complications further down the line. 

Best wishes,

Sandy

I have been on Sprycel (dasatinib) for several years now, after I stopped responding to Gleevec. My experience has been that the side effects are at their worst when first starting on the treatment. In my case the severity deceased after a certain amount of time. Everyone is different however, so it's difficult to predict how each individual will react to the drug. For example, my biggest problem with Sprycel by far is fluid retention. I'm only taking a 50mg dose of the drug each day. Even with taking 100mg of a diuretic per day I have fluid build up. The next person may have a different experience. But from what I have read on various forums, the body adjusts to the drug and eventually the severity of most side effects will lessen. With the exception of the fluid issue, that has been my experience. When I first started on Sprycel I had pretty serious nausea and runs. This eventually became a non issue for me. 

I will be on Sprycel 3 years this January.  Initial dose caused severe fatigue, so severe I could not get out of bed.  My oncologist decreased it to 70mg/day, 5 days a week and I can now work full time and work from 10am - 9 or 10pm 6 days a week.  I try to catch a catnap if not on appointments.  The fatigue is annoying but not severe enough to stop me working so I'm grateful.  The reality is though I don't have the energy I used to have, I wake up tired every day, and after working 6 days I spend the 7th day in bed.  I feel like I'm running toward a wall at full speed and I don't want to stop and ask myself why the f.... am I doing this cause I don't want to think about the answer - because I don't have a supportive husband or  I don't feel like I have a supportive husband or I'm expecting too much support from my husband.  No wonder they say in sickness and in health in wedding vows!