Iwas diagnosed with PV then MF 8 years ago. had bonemarrow transplant 2006 now have AML, anyone similar

[geneva1]

[CADLondon]

Hi Geneva, sounds like you are having the worst time. I am currently sitting with my husband who is in intensive care at the Royal Marsden (marvellous place). He has primary myelofibrosis and had a stem cell transplant in May. He hasnt been out of hospital because he developed a bad lung infection which is why he is here and on a ventilator. I am alarmed to hear that you have developed AML after your transplant. I take it the transplant was successful? I have to say that I thought if the transplant is a success the risk of developing AML was gone. Clearly not. I am so sorry to hear what has happened to you.

[wendyhelen in reply to CADLondon]

So sorry too hear about this.I am 73 & was diagnosed with a bone marrow biopsy 1year ago this month with MF, my symptoms are very painful the bone marrow is now being made in the ribs morphine helps but causes its own problems... I am too old for any treatment though I have tired the latest drug which is being trialed now. It was wonderful for 8weeks no symptoms at all but now my HB & nutraphils are so low I cannot continue with it .

Is there anyone out there in my age group that cannot be treated

And can anyone tell me what AML is & Et sorry to be so dence

[JediReject in reply to CADLondon]

Hello. I just read your post and it seems like you two are not having the best time of it either. I dunno if you can talk to your hubby but i wish you both a successful outcome and if you want to have a wee chat via this its no problem. I will have to undergo same at some point and to be honest Im not really looking forward to it. Ho hum there we go. Cheerz

[geneva1]

Unfortunately the transplant failed after a couple of years and the MF returned. I had a matched unrelated donor, maybe your husband is luckier and had a related donor. Anyway I wish him well. The months after the transplant are never easy.

[CADLondon]

He too had unrelated matched donor. Did the cells graft initially for you? What were the symptoms when they started to reject if that is what happened? Wouid really appreciate knowing. In answer to Wendyhelen it means acute myeloid leukaemia and is untreatable I think. C

[CADLondon]

Hi again, sorry, in answer to wendyhelen, are you in touch with Claire Harrison at Guys & St Thomas Hospital. She is expert in MF and leading drug trials in the UK.

[geneva1]

Yes I was but I was never eligible for any of the drug trials. Also difficult to go Guys and St Thomas, as I am very close to the Royal Free. Thanks anyway

[CADLondon]

Sorry Geneva, that last reply was to Wendyhelen and not you. Can you tell me if the cells grafted initially? Then what happened? How did you know that the transplant had failed after a couple of years? What happened to tell you it was failing? Sorry, this isn't much help for you, it's just good to hear from someone who is a bit further down the line.

How are you anyway? Very afraid and pissed off I guess?

[JediReject]

Hi Geneva. Gee youre having a crapola time of it. . Thankfully im not that far on just yet so cant help answer your question but ive been on the hydroxycarbamide for 6yrs and they been linked to developing AML. .were you still on them post BMT or another similar drug. Cheers and good luck to you

[geneva1]

Took hydroxycaramide prior to transplant. Stopped for a couple of years but when MF returned started again. Take it to try and contain my gigantic spleen. Thanks for replying and best wishes to you.