Hello All
i was started on 100mg Dasatinib (due to liver problems with Bosutinib) and within a week was having some very bad side effects with chest pain and breathing problems. As a result the meds were stopped for 2 weeks and have now been told to restart at the same dosage! Is this normal procedure as I would have thought dosage would be at a lower level?
Hi Mick, it sounds like you have been on a bit of a journey. On an earlier thread you said you had started on imatinib, and then it seems you have been on bosutinib, and now dasatinib, all in 12 months. Is that right? What is your latest FISH or PCR (BCR-ABL) test result? That will be the best guide to indicate the dose you should be taking I think.
hello Alastair, had problems with them all so far! Imatinib was causing serious respiratory problems and chronic depression which literally put me on the edge of cliff twice! 🤯 I could cope with the other side effects they caused, just!
bosutinib was causing serious liver problems so had to come off them. I was feeling ill but had the least side effects of the 3 treatments so far.
Dasatinib caused problems on cardio/respiratory function within 3 days, even walking felt like I was running! I have an undiagnosed heart/lung function so not sure if Dasatinib is exacerbating the problem. Started taking meds again today so will see what happens!
Mick, where are you seeing your specialist? If it is not at one of the specialist centres listed under Patient Info above, is your specialist in touch with one of them? With your level of issues with the meds it might help. Also what is your latest BCR-ABL result? It will give an idea where you are in the battle against CML.
Alister I’m currently under the NHS in Doncaster. I’m not sure if they are in contact with the specialist treatment centres. The condition has been responding very well to the various meds , just issues with side effects.
I haven’t asked for a printed copy of the numbers so will have to ask next time I see The Haematologist.
Thanks. Next time you see them in Doncaster also ask them where your PCR testing is done - many regional general hospitals don't have the equipment to do it and they go to a specialist centre. I would expect yours goes to Leeds. My specialist is in Chester, but my PCR samples go to Liverpool. My specialist in Chester did some of his training under Prof Clark in Liverpool, and he has taken Prof Clark's advice on me. Prof Clarke also runs a regional forum meeting on CML for consultants. I know of a couple of people on here who have been seen at other hospitals in our region by consultants who did not attend the forum, and when unusual things happened those consultants struggled to get it sorted out. Some areas work if required on a two centre care basis, where the samples are taken at the local hospital, who get some result interpretation help from the specialist centre.
CML is a rare condition, and general hospital haematologists don't see that many patients with it. It is not unusual for people to tell the forum what their consultant has said, and for people on here to say that the consultant is not up to date. It is not that these people are bad consultants - they just can't keep up to date with all the developments on CML, as they are coming so thick and fast.
Mick, just one other thought. If you're near Doncaster it might be useful for you to go to the patient day at the Armouries in Leeds on 21 September - see the pinned thread at the top of this page. I'm afraid I can't make it this year but there will be many people there who know what you are going through. You will also get to meet some of the brilliant doctors who are working on improving the treatment of CML even further. The venue moves around the country every year; this is probably the best chance you will get for it to be close to you for a few years.
