MPN Voice

Myleofibrosis and acute myeloid leukaemia

I am 47 and have no family able to give me bone marrow for a transplant, has anybody got any advice about treatmen or even prognosis. All I can find on the net is your gonna die, so am desperate for some proper sensible advice. I was only told 3 days ago, but told I would need 2 weeks of chemo and a bone marrow transplant. Please am freaking out ......

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I didn't match any of my family. I had a MUD (matched unrelated donor) SCT (stem cell transplant) from someone found on the uk bone marrow registries although the search would have gone worldwide as stem cells are transported around the world if a suitable match is found. There are lots of us around who have had this treatment. Yes, two weeks of chemo, the latter part that will make you feel like ****. But all about killing the disease. Which country/part of the country do you live in? That can make a difference as some are more advanced than others. And yes you can see bad news on the internet. Try googling my name chris harper and SCT. It should take you to some articles from patients and doctors about the process. Happy to answer any questions.

Chris

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How absolutely frightening for you and you're so young. I agree with the comments Chris has made and am surprised this wasn't offered to you when you were diagnosed. It's easy to say but try to avoid the internet or only use reputable sites they can be terrifying and no one knows your status they are exclusive to you. I wish you well but would phone your haem and ask about MUD the sooner you act the better it will make you feel. I'm sure you'll get responses from more people on this site who have had SCT.

Pat

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Hello Paul,

In spite of having 4 brothers and sister none of them were compatible, however, like Chris, I had a MUD SCT.

An English man living in France, my donor came from the USA - what an international mix!

Although there have been difficult days I'm doing pretty well and have no regrets.

Best of luck

Crapaud

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Hi Paul, good advice from Chris and the others, please speak to your haematologist and ask him/her to explain things more clearly for you, it might help to take someone with you. You need to know more than you have been told. Best wishes, Maz

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Hi Paul, can't help you medically but sending you lots of E hugs which I hope will help a little. I think as Maz says you need more answers. It's your body and your illness, don't be afraid to be assertive. One you have the answers, you will then be able to deal with them, but not having the information is scary and makes us anxious.

Thinking of you Aime xx😺

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Hi Paul, I know it is difficult to be positive, but you will need to put your trust in your doctors and keep that chin up. There is so much more known about MPNs nowadays that you can be assured things WILL improve for you. God Bless 👍

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Hi Paul, I am 61 yrs. old and going through this process right now with a diagnosis of Myelofibrosis. I have 8 siblings and have had only 1 match. Although I am early in this process finding a medical facility that specializes in transplants for me has been key. I am sorry to hear how you were told about your options but there are avenues to search for a match. If you have a Leukemia Lymphoma Society give them a call and ask if a former transplant patient would contact you so that you can firsthand as to their experience. They also may be willing to walk with you on your road to recovery. DO NOT GIVE UP HOPE! Hope and advocating for our treatment is what we have control over.

Thank you so much for sharing your story. Please keep us posted on your journey and may my Blessings be with you.

Alicia

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