Stem cell transplantation

[daisystar]

Are there any myelofibrosis sufferers out there who are considering stem cell transplantation? If so, please get in touch. Thank you.

[JediReject]

Hi Daisystar. . . I have been assessed for BMT a couple of times in the last few years but continue on the drug route for the time being, though if the Ruxolitinib doesn't do the business for me in the next few months I may have to face that decision. A friend of mine has recently undergone one and is gradually picking up in spite of a number of setbacks mainly due to Graft v Host and infection. So definitely not been an easy choice for her but she simply ran out of options.

There is at least one person on here that went down the BMT route early on.

What is the background to your question if you don't mind sharing it to put it into context. . Cheers JR

[babbittybumble in reply to JediReject]

Hello Daisystar. Our son has Primary Myelfibrosis, when he was diagnosed at age 37 they did think a BMT would have been necessary within two years. Seven and a half years later it has not proved necessary and thankfully he is very fit and well.Hopefully the gentleman who has had a BMT will see your post and respond to you.Take care

[daisystar in reply to babbittybumble]

It is so good to hear that your son is well. He is so young and I hope he will never need a transplant. I am faced with this decision now and find it very difficult because of possible complications which can drastically reduce quality of life. All the best to you and your son.

[daisystar in reply to JediReject]

Thank you for your reply JediReject. I have been told that I should consider a transplant because I am Intermediate 2 and the biggest problem is anemia which does not respond to anything other than transfusions. Prof Harrison suggested a transplant, because I am relatively young, apparently, and don't have any co-morbidities. My own consultant is now looking for a donor. I am terrified of complications, particularly GvHD. I have read various accounts of survivors on the Net, some more encouraging than others, but thought that direct contact with people in similar situation would be more beneficial. I am wondering what a definition of "cure" is in this context and how many serious complications persist despite the 'cure".

[beetle in reply to JediReject]

Hi JR! How are you doing on the Rux golden ticket? I don't want to hijack Daisystar's thread but interested to hear how you are getting on.

[JediReject in reply to beetle]

Hi Beetle my friend. . . Very good to hear from you and thank you for asking about my progress. I take 2 x 15mg tabs a day. I would like to take 20mgs but my platlets are down so I seem to be bruising easily which Im not prone to. Im still fatigued and sleeping with ease, very little impact on my spleen as yet which is uncomfortable, and have pain in my feet/legs. Plus points; my itching greatly reduced enabling me to take showers and my appetite very good with a half stone gain. So my Rux golden ticket is a tad tarnished but i've got me Brasso ready and Im still very optimistic that I will benefit by taking it long term.

Hope you are doing well. Cheers JR

[beetle in reply to JediReject]

Thanks for the response, JR. Sorry to hear that Rux is not such a golden ticket as you hoped. I have had to reduce to 10mgs x 2 now for the same reason as you. As I had ET previously for at least 17 yrs it is a novel experience to try to keep platelet count up! I am considering possibility of drug trial in the early spring. Rux had no effect on shrinking my spleen either but it has not got much larger either so that is a plus. I love your cheerful optimism so hope the Brasso keeps you well!!!! Take care my friend.

[MFBMT2011]

I am nearly four years out from my stem cell transplant and know 20+ others who have been down that route. Happy to help if I can. Chris

[daisystar in reply to MFBMT2011]

Chris, I will soon have to take a decision as to whether or not to undergo a transplant and I find it very difficult. I have done a lot of research which paints a terrifying picture. May I speak with you about your experience some time, if possible, please? Thank you

[MFBMT2011 in reply to daisystar]

Very happy to do so. I am an MPNVoice buddy for potential transplantees. I was visiting a six month 'out'transplant buddy today. We can talk via email, on the phone or even meet if geography allows. Mail me on [e-mail] and we can set something up.

Chris

[Ednama]

My husband had a stem cell transplant in April. He was diagnosed with myleofibrosis and myleodisplasia four years ago. Twelve months ago the myleodisplasia started getting worse and this is why the transplant was needed.

[daisystar in reply to Ednama]

Dear Ednama, thank you for your response. I take it your husband is well following his transplant? Do you think he would be willing to share his experience with me when he is ready to talk about it? I am considering a transplant but can't make up my mind; and talking to a survivor would be very helpful to me. Best wishes to you and your husband. Daisystar

[Ednama]

He is quite well but is having another DLI as the donor cells dropped initially. He would be quite willing to share his experience if it would be helpful.

[daisystar in reply to Ednama]

Ednama, Thank you for a quick reply. I am going away for a few days tomorrow morning and I will get in touch with you again when I get back. Good luck with the DLI.

[Hidden]

Hello, I'm 10 months on now from my Stem cell transplant, I've had PV since 2008 and in 2012 it mutated to AML. I had no choice but to go for the transplant and I'm really glad I did.. So far it has gone very well.

Peter

[daisystar in reply to Hidden]

Dear Pete, thank you for your reply. I'm glad to hear you are well. I have primary MF and I wonder whether the transplant process is the same in both conditions. Did you have your transplant done in London? Did you have any complications afterwards? Any advice is gold dust to me. Thank you.

[Hidden]

Hello daisystar

I had my transplant at the Freeman hospital in Newcastle, they were fantastic! Like you I also had some myelfibrosis in my bone marrow along with AML. I don't think the transplant procedure would be different but the chemo is set to each persons condition.

I'm not aware of any complications, but if you have a positive mind, I'm sure that helps.

At my last biopsy, all the fibrosis and AML was gone and my donor is making 100%. Of my blood.

The one thing I would like to mention is fatigue, after coming home from hospital, this effected me for many months.

Good luck with the transplant and please keep in touch, if I can be of help, please get in touch.

Kind regards

Pete