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Heart Failure and Dasatinib

we had a phone call to say that Rob has signs of heart failure (an enlarged heart and plural effusion) He has been breathless for a few months so has had a couple of chest x-rays recently. We have been told that heart failure is a rare side effect of dasatinib (2%) We weren't able to come to the recent conference and his next appointment to see Graham Smiths team is in January.He is having an echocardiogram on the 5th and we are hoping his results will be back when he goes to our local hospital for his bloods on the 15th. I wondered if anyone has any ideas what the options are in these cicumstances and wether a break from dasatinib would allow his heart to recover, his PCR is 0.2. Any advice would be appreciated
Sal

Hi Sal,

I would question why he is still on Sprycel. An enlarged heart and pleural effusion is very dangerous (life threatening). If it is being caused by Sprycel then why are they still giving him the drug?

I would not wait until January or even one more day before getting medical help. The drug is much worse than the disease.

Zavie

Zavie thanks for your reply. We will ring Rob's consultant on Mon morning. Sometimes it's difficult to get straight answers Rob has a consultant at our small local hospital who he rarely sees, he just sees specialist nurse when he has his bloods and he sees someone from Graham Smiths team in Leeds every Three months. sometimes it seems they don't always agree on the best way to proceed.
Sal

Hi Sal, please take Zavie's advice. Rob needs to see Graham Smith or one of his team and really should have been referred as soon as it was confirmed that he was having cardiac problems. I am amazed he has only seen the specialist nurse!!! Be pro-active and call Leeds for advice.
He may well respond to nilotinib as there are no cross side effects between the drugs... so don't worry about the CML at this point. As Zavie says CML is not the issue here.
Please update us,
Sandy

I was reading Rob's experience.

I had my specialist check-up today.
A small heart murmur was found. After all this time.
He thought it could of also been excitement (his words) of visiting him - I would say it was more the stress of vehicular traffic and trying to find a park. However he is very thorough and I am to have a 2 D and echo done next week in Hospital. Takes about 1 hour or so.

Specialist thought it was very rare for CML people on glivec to have heart issues caused by medication but there is always one.

Like Rob I too at times become a little breathless but tought this was just part of the CML condition.

What are your thoughts?
1. glivec causing heart murmurs
2. breathlessness

I am still PCRU however my white cell count is a little low.

Sue (Aussie)

Hi Sal
Well I was on Dasatinib and had a very hard time, in fact I had so much plural effusion they tapped me (three times) and removed about 8.5 500ml bottles over a 3 to 4 week period. I was in the hospital but I had Pneumonia along with that. In fact Zavie and I talked about Dasatinib, it is a very good drug but very hard on the system. I am off Dasatinib now, put back on Nilotinib, only lasted six days and had my liver enzymen shoot through the roof. I am not on anything right now.
Although I have had this CML for about 30 plus years and believed to be the longest survivor in North America and maybe the world (see www/cmlsource.ca) for my story, you will find many many great articles on CML.
I hope all will come out ok for you both
SkipD
diag 30++++ years ago..

Hi Skip,

 

I am curious, how was your CML treated before the advent of TKI's?  I am not trying to be nosy, I am simply curious and if you rather not talk about it, I understand.  Congratulations on surviving.  I was diag 7/13/05.  One of the worst days of my life.

Best wishes to you,

Wendy

SwanValleySue

I have also developed a heart murmur on TKIs (Dasatinib 100mg first six months, 50mg last two years). 

Mitral valve regurgitation has gone from trivial to mild-moderate.

Left atrium size from normal to moderately dilated (Left Atrium volume 25 ml/m2 prior to Sprycel 45 ml/m2 in this month's echo)

Neither my endocrinologist or my haematologist know whether this is related to the Sprycel and whether or not it's a concern if it's stable. They've recommended monitoring it and you've reminded me to get a referral to a cardiologist. 

I had hoped to reduce my Dasatinib to 20mg per day to reduce the chance of unwanted side effects but my BCR ABL doesn't seem to be budging from 0.02 so still on the 50mg per day at this stage.

 

 

Sal

Agree with everyone else that your husband needs advise from a good CML specialist about this and if it's pleural effusion the recommendation is to stop Sprycel until the effusion clears.

Try not to panic about the words 'Heart Failure' until you get the full details of what they've found. It's a broad term. It does need to be managed properly though.

Good luck!