Hi
Recently been diagnosed with MF at the age of 53, and the consultant at Guy's has proposed stem cell transplant later this year, has anyone had this treatment and if so any suggestions?
I have a potential sibling match which is currently being investigated. Given the recent diagnosis still taking everything in as there is a lot to think about.
Thanks in advance
hello 67Red, another member Bullace has just posted about possibly having a transplant, the replies will help you. Maz
Hi 67Red, , sorry to read of your MF diagnosis. Obviously theres more detail behind your post but at 53 and recently diagnosed Im wondering why the rush to transplant ? Have you been told what stage your MF is at , in other words have you had it long before diagnosis, has it transformed from another MPN perhaps, or your markers show it's higher risk to leave it. Do you have many symptoms like night sweats, enlarged spleen right now because the usual route would be drug therapy for a good time.
In my opinion having been through SCT for MF unless there is a very good reason as to why you're a candidate for transplant so soon (and I trust that your in safe hands at Guys) I would want to know if your symptoms can be managed by Hydroxycarbamide or Ruxolitinib if it's now the first line drug of choice for MF.
You're right in saying there's alot to think about but good news if your sibling turns out to be a match.
Chris
Hi Chris
Thanks for that, whilst I am relatively free of symptoms I have been told the rush is due to the markers I am in high risk category so I think this is why they are keen to get on with the treatment. It is all a lot to take in right now but hopefully find out more at my next appointment.
Thanks for replying I knew there must be a sound reason though good you havent any troubling symptoms. From experience I know it isn't an easy diagnosis to cope with. , I asked for a bit more info not to question it being on the table for you but out of curiosity as I know only of Chris (Princess Leia version) who replied below going to Transplant so soon after his MF diagnosis. As you might of read Bullace is an unbelievable 30 yrs with it , I had it roughly ten years before I opted for SCT. But there are many variables and each of us presents differently.
As others also rightly point youre in the best place at Guys and if your sibling is a match you've got a couple of aces in hand to start with.
I wish you the very best of luck going forward.
Chris
I think that the Guys department under Claire Harrison is regarded the most expert and informed in the country.
In other words; they know what they are talking about!
Claire Harrison and the team are excellent. I went to Guys fir my second opinion on MF and was helped towards my stem cell transplant (SCT) , which I wanted, I didn’t like what was happening inside of me and the prognosis. From there I went to UCH and, aged 58, had my SCT ten years ago. If you read my bull ace reply it points to my story online from diagnosis to three months out. You can find similar stories in the free MPNForum online magazine. There are also some video clips on the Mpnvoice web site. Happy to help and chat to answer questions via email, text or phone if I can help you better understand SCT from a patients perspective. SCT is challenging, risky but worthwhile. Chris (Princess Leia version I.e. not Jedi reject)
Really sorry to hear of your diagnosis but good to see so many know you’re in good hands. Can you please tell me what high‘markers’ are in the case of MF? I too don’t have major symptoms (yet) but wonder about my ‘markers’ now.
I’m 62 and have decided that I certainly won’t have a transplant, to me it sounds harrowing and risky and time stealing. My haem said as I was ‘young’ it was worth considering. Young!! I thought….sheesh, this business sure makes one feel way old then. I only got diagnosed for MF in April and have probably had an MPN since 2016. Just saying…maybe you can at least take your time deciding.
Hi Magentas, I am not sure they said what constitutes the high markers, just that they were high. I have another appointment next week and will start some medication then so might find out more then.
Hi, 67red, Sorry to hear of your diagnosis. I was diagnosed with post ET Mf intermediate 1 in September of. 2019 at age 63. My doctor told me that I would probably need an SCT within the next 2 to 5 years. She immediately made me an appointment with an SCT specialist. They tested my sister and she was not a match. You have two things going for you. You are young and as you said, relatively free of symptoms. Also, even though I am in the states, I’ve heard many good things about Guys. If your sister is a match, that is a third advantage. My hematologist, who I had changed to that year after suffering with anemia and very high platelets for a couple of years, thinks I probably had MF for much longer. I wish I had known earlier, because as you get older it gets more riskier. I wish you all the best in making this most difficult decision.
Hello 67 Red, I was diagnosed last year at the age of 71, and told that I was too old for a transplant. I know there are risks, but if I had the opportunity, I would definitely go for it. Of course this is only my opinion - I wish you good luck, and keep us all posted.
Bonnie
Hi Dancingelephant, I definitely intend to go ahead with the transplant if possible, will keep you posted.
Recently diagnosed with ET
Recently diagnosed with ET (CALR+)
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