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Hi Wondering if anyone has had bother with swelling in and around the neck/face/jawline whilst on this medication. A few months ago my face was so badly swollen my GP thought I had mumps, however blood test came back negative. My specialist dropped the strength of my tablets from 120mg to 100mg and now I'm down to 80mg daily to try and lesson side effects. One of which being terrible pounding of my heart when I lie down to sleep at night, can be scary at times. BCR sitting about .003 However, I now have developed Bell's Palsy on one side of my face. I wondering if this is all connected to dasatinib. Rab

Hi, Rab, and I am very sorry to learn of your problems.

I have CML, but it is treatable with Glivec, but my concern is your pounding heart. I am sure it is not a dangerous problem - I had a similar problem following 4 heart attacks, and, with me, it was due to low blood pressure.

I solved it by going to sleep sitting up. On waking, in the morning, I would be lying down quite comfortably.

Not much of a help, really, but I would strongly suggest to your doctor, that he needs to take this further.

All the best

Richard

Thanks for that Richard. Have the hospital tomorrow for a check-up so will try to get the heart problem sorted. I've also get a feeling of pressure in the middle of my chest and shortness of breath. Doctor assures me my chest is free of fluid.

thanks for the help

Rab

Dear Rab... I am wondering if your doctor has suggested you change therapy to another TKI? You obviously have some possible cardiac issues that really should be investigated carefully to rule out whether dasatinib is causing these problems. If so then nilotinib would not be recommended but bosutinib may well be the answer. You need to get this sorted out asap as bosutinib might well become difficult to access...at least if you live in England.
However, good news if you are living in Scotland as you will be able to have full access bosutinib.

Hope you are able to sort this out as it may well be the sign of a TKI cardiac side effect.

Sandy

hi, Rab,
I am having the same problem as well. I was previously on Imatinib, but once switched to Dasatinib, the heart pounding problem started about one month into the therapy. My specialist has checked my heart but find no problem. I don't have heart issues previously. This problem also get worse when I ly down. I am 100% sure it is caused by Dasatinib, because once I stopped dasatinib, it improves straight away. The only way to resolve it is to change to another TKI. I have requested to be put back on Imatinib. I did some research on internet, and i found that heart pound may be caused by over work of heart musle and eventually it becomes weak. There are a number of Dasatinib users having this problem. How long have you had this problem for? I hope it doesn't do permanent damage. Luckily you bcr is low, you can be put on lower dosage. Can I ask how long have you been taking Dasatinib for?
William

Hi William

I started to have this problem as soon as I took dasatinib. I have been on it for about eight months. Was diagnosed in 2003 and started Imatinib but had to be on a higher strength to get a good bcr.

Hi Sandy

I had my check up on Monday this week and the bell's palsy is a side effect 1-10,000 get it.
The heart problem I feel is defo the dasatinib. I was on nilotinib last year and had the same heart pounding, so had lots of tests done and the heart looked fine, but I found this table really hard to take so they tried me on dasatinib.

The docs aren't sure what to do with me next. BCR nice and stable .003 just waiting for a phone call. I could go back onto Imatinib but had terrible eye bleeds on it and had to take 800mg daily to keep everything at bay. I live up beside John O Groats in Scotland so am I right in thinking that Scotland dont hold back on meds?

Thanks for support

Rab

Hi Rab... you should be able to get access to all TKis in Scotland- bosutinib would be the one to go for. I know someone who suffered permanent damage to his heart because of nilotinib - this can happen to a minority- but is doing extremely well now with bosutinib. It seems it does not have as many serious side effects as the other 2nd gen TKIs.. particularly cardiac. Having said that long term effects for all TKIs are now more evident. No drug is side effect free, but I think you need to be careful if you are having any kind of symptom like you describe.
Good luck for getting a change to a better tolerated drug. You might want to contact Glasgow and ask for a second opinion?
Sandy

hi, Rab,
I've just stopped dasatinib 3 days ago, the symptoms of heart has improved a lot, I can finally have a good night of sleep. I'm not sure why you have to take 800mg Imatinib at this stage as your bcr is quite low. I'm now sitting at .25, dasatinib has almost done nothing in the past two months for me and yet I am suffering cardiac problem because of that. If I was you I would try an alternative. Try a different doc also will give a different opinion. Gook luck.
William

Thanks for advice Sandy. Still waiting for phone call from hospital but am very short of breath when I do anything physical- stairs, washing car etc. Will defo ask for a second opinion in Glasgow.

Regards Rab

I've been having a few problems with elevated pulse and a pounding heart recently too. Not too bad, but enough to warrant it to be checked out.

Chest x-ray, CT and EKG all were pretty normal. Echocardiogram next, and if that's all fine then it appears it might just be something like post-viral arrhythmia that will sort itself out.

Quick update, I am starting on 100mg bosutinib next Monday. Raigmore hospital did not have a license to dispense it but applied for one and got it. My consultant is starting me off on 100mg but she has said that this is a starting dose and she will want me onto 500mg within a few months. Can anyone clarify why I need to go onto a high dose if my bcr abl stays under control? I am Philadelphia chromosome.

Rab