I have been taking Dasatinib for over 4 years and presently suffer from pleural effusions, which cause me to be severely breathless. Does anyone have the same symptoms, and what advice have they been given by their doctor?
You are here
Dasatinib side effects
Categories:
Hi Judith
Unfortunately quite a few get this side effect. Has your doctor spoken to you about taking a short break from the drug to let it clear? It may also be worth considering a dose reduction (assuming your counts are good) to see if that alleviates the symptoms. A short course of supportive steroids may also help. I suffered from this for a while and eventually had to change treatments.
Hope it clears up for you.
K
Hi Karen
Many thanks for your helpful comments. My doctor has told me I can reduce my dosage to 80mg but when I asked if it would affect my cml and whether it would reduce my plural effusions, his answer was he did not know. This is why I am trying to seek some answers so I can make a decision. I would love a break but this has never been suggested, nor taking steroids so I will mention both at my next appointment. Would you mind if I asked what treatment you are now on and whether it is working much better than Dasatinib.
J
Hello
I was on Dasatinib for around three years in total at varying strengths but my counts didn't really drop low enough. I am now on Bosutinib and I have better counts and less side effects. I am not sure what else you have tried but don't be scared of moving to something else - it may be better for you.
K
Hi, Judith,
I also took Dasatinib at one stage. But due to heart pumping caused breathless, I switched to Glivic. If your counts are low enough, say below 0.1%, I think you can try other TKIs. Because we are probably going to take these TKIs life time, so it is important to find a TKI that you are comfortable with when it is safe (your counts are low enough）. After all, the quality of the life is also important.
William
Hi. I understand just what you're going through. I have also been on Dasatinib for about the same amount of time, after about 1 year on Gleevec. Fluid buildup around the heart and lungs has been an ongoing problem for me. I started out on 100mg of Dasatinib per day, but fluid retention became such a serious issue, even while taking 60mg of a diuretic each day, that my hematologist allowed a brief "drug vacation". He then reduced my Dasatinib dosage to 75mg. I was better for a few months, but the fluid retention again became a problem. So another brief "drug vacation", maybe 2 weeks, then another Dasatinib dose reduction to 50mg, along with a 40mg increase of the diuretic. That's where I'm at as of today. It seems that the 100mg daily diuretic dose helps just enough to control the fluid problem while taking 50mg of Dasatinib each day. Even though this dosage level is only half the recommended dosage (according to my doctor) it is keeping my CML under control and so far blood test results are showing a PCR ABL 4- log reduction. It seems I'm walking a fine line though. If I deviate at all from my daily routine and miss taking the diuretic, then I'm in trouble. I have shortness of breath, constipation and it can take days to get back on track. I've described Dasatinib as a difficult friend: can't live with him, but can't live without him either. I once discussed switching to Tasigna (Nilotinib) with my hematologist. I've read that it doesn't cause the fluid issues. But apparently it is harder on the heart and I have heart problems also, so we want to avoid a change in drugs if at all possible. I think my hematologist was initially surprised that the lower dosage of Dasatinib has kept the CML under control. He was at first reluctant to lower the dosage and thought that 75mg was as low as we dared go. But I have now been at the 50mg dosage for over 2 years.
Hi Andey, good to hear you have some control over your 'difficult friend' (what a great way to describe your therapy ;o). I do know of others who manage their disease very well with even lower doses of dasatinib than 50mg. One particular person has been taking 20mg daily (with the close monitoring of her haematologist of course) without any serious consequence and with good control of her Bcr-Abl %
You are right to be wary of changing to nilotinib given you have cardiac issues and because of the drugs cardiac side effect profile. If you are treated in the US - or anywhere other than England- you may be able to get access to bosutinib which I think generally has a better cardiac side effect profile the the others as well as lower risk of pleural effusions of which dasatinib seems to be the main culprit.
Best wishes,
Sandy
Hi Andey
Thank you so much for your helpful comments. My doctor has agreed to lower my dosage to 80mg so I hope this will ease my symptoms. In the meantime I will certainly ask about a 'drug vacation' and also about taking a diuretic, neither of which have ever been mentioned, as I feel both might help to alleviate the plural effusion problem.
Judith