Having reacted v badly to Hu in the past, the ha... - MPN Voice
Having reacted v badly to Hu in the past, the haematologist wants to put me on Busulfan. Has anyone had similar experiences? Tinkerbell
Hi
Sorry to hear about your bad reaction to Hu and having to go through changing treatments
What condition do you have? I have Et and was on Hu for 8 years about 3 years of them in and out having tests as had very bad panic attacks and GERD and felt ill a lot of the time until my consultant realised it was the Hu causing this - i was on interferon for a couple of years and for the last 2 years I have been on pegulated interferon which apart from having a bit more fatigue for a couple of days after injection have hardly had any side effects - I have never been on Busulfan but did think this was a very old treatment and that other treatments like interferon and anagralide were more used and more current? Happy to help with any questions I can - I was diagnosed at 21 and had for over 12 years now so hope I can help you
Take care
Becky
Many thanks. I have ET. Actually just 73 - whereas you are very young! Very helpful to get your reply. best regards Tinkerbell
Do you mind me asking how old you are? Have you tried anything other than HU? There are other drugs, interferon and Anegrelide (or Ruxoloitininb if you can get into a trial) that have a far less damaging side effect profiles than Busulphan. I was on Busulphan many years ago and it is not a kind drug. I had side effects at the time including bladder problems and I am now told that Busulphan is very much a last resort in terms of treatment and is hardly ever used nowadays - especially in patients under 80 years of age. My advice would be to do as much research as possible before taking busluphan and then you can make an informed decision. Just for your info my ET has progressed to MF and although I cannot prove busulphan had anything to do with it it is certainly listed as risk factor.
Many thanks, have found your reply extremely helpful and want to use what you have said as a pointer when next seeing the haematologist (obviously no names!). Sorry your ET has progressed to MF. I am 73 and feel fine, but platelets about 900,000, so threatened with Bu v soon. Totally opposed to it and my family feel the same. A catch 22. Best regards, Tinkerbell
I also understand that the threshold for treatment nowadays is 1500. Perhaps without the HU yours would be this high, I don't know. This threshold is regardless of age but depends on any other events such as clots, TIA's, stroke etc in which case treatment is initiated sooner. Hope the discussion goes well when you next see your haematologist. You say "no names" but if your haematologist is not an MPN expert then it might be worth asking to see an expert before agreeing to take Busulphan. I live in Scotland but was still able to see Claire Harrison in London.
That is a good idea re Claire Harrison. Many thanks for such a helpful reply. Tinkerbell
That was a typo and should read Ruxolitinib in the brackets!
Reading the other more experienced than I am in the list of drugs available ,I took hYdroxycarbamide for 18 months ,which made me feel very ill. But I read about ruxolitinib here on this site ,,my doctors put my name forward to go on this trial drug ,
It's obviously not good for everyone ,,we are all different ,but I'm so much better now ,
Once you get informed you feel able to ask for what you need ,,don't ask ,don't get,,
I'm just twinkling along !!!
Glad you are on this trial and getting good care. Best regards and thank you for replying - v helpful. Tinkerbell
