Last year I wrote a few posts about my first transplant (MUD) to treat myelofibrosis. It failed to engraft so we tried a second transplant (HAPLO). It too was initially deemed to have failed. On day 130 we attempted a stem cell boost. That is where one gets more stem cells from their donor, like having another Day 0, but without the preceding chemotherapy.
Pleased to report that the boost has been very successful.
About 50 days after the boost I became transfusion independent. 110 days later I finished the long tapering off process for the prednisone that I had been taking to support my blood counts.
On day 318 my haemoglobin count was 134 and platelet count 58.
This is really good news. Essentially I am back on track with your more typical transplant patient, it just took a year longer.
Best wishes, Simon
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Hi, I am doing well. Still recovering. Life expectancy post transplant is quite variable. Some transplantees live very well for a long time. I am ever hopeful
Hi Simon, it gives us all hope to read your post. What perservance you have. All those days watching and waiting. No mention of any misery you had to go through, just your focus on the end goal. Long may it continue. Mairead
Hi Simon this is fantastic news and far by the best i will get today and maybe this week for sure. .I too have been wondering how you're doing with your battle. Having had a bit of a rough ride on the SCT roller coaster myself and witnessed the disappointment and despair of others whose initial Graft has failed I know only too well the emotional impact on you and loved ones.
I've never regretted opting for SCT although like you mine took much longer to work in my favour , however it was well worth it as I'm now reaping the benefits of a life without Myelofibrosis and it's taught me to appreciate lifes simple pleasures and celebrate what I can do rather than dwell on my physical limitations.
Simon, I sincerely wish you all the best going forward , , don't look back (in anger !! ). . .
Regards - Chris (not the one with the lady cells -MFBMT)
Hi Mel, , Thanks for asking. . . Just trundling along life's highway around half throttle. . I occasionally get the revs up and speed a tad but just like a speeding fine I pay for it after.
Generally things are good though I'm struggling to fight off Winter infections like many.
I get a cold which starts day 1 with a sniffle, runny nose and by day 2 it's like armageddon in my head. Apart from that life's just grand.
Hi Chris. I hope armageddon does not last too long or hit too often. My world is as messed up as ever, so no change there. I wish you and yours a merry Christmas and a healthy, happy new year. Much love Mel x
Hi Jedi Chris, great to hear from you too this morning! Hope those pesky germs leave you alone and you can enjoy a healthy Christmas. Take care, Christine
Hey Chris, lovely to hear from you. I often refer to it as being on the SCT roller coaster too! Like your song reference. It is great that you are getting to enjoy life's simple pleasures after the very tough road you have been down. That's what it is all about. Thanks for the good wishes and encouragement ...cheers, Simon
Hello, i am interested in know if doctors have tell you details about life expectancy after transplantation. Or if in case of relapse, is it possible another transplantation. Also how do you cope with the fear of the unknown??? I have a massive problem about it.. i need advise from someone that did it!Thank you very much
Hello Aneliv, , The docs can't really predict ones life expectancy post Transplant. Or indeed what the chances of relapse are. Suffice to say that the Transplant process takes its toll on your vital organs ie liver, kidneys, heart and we're all different in how it affects us longer term. I think ones chances of not relapsing improve after 5 years.
It's possible to have a 2nd Transplant in some cases but unfortunately not all as for example when the relapse is too aggressive .
There are just too many variables to make any predictions I'm afraid so it's a case of taking ones chances. As for coping well some people simply adapt to it better than others. But having a loving supportive partner / family and having 100% confidence in your medical team as I did helped enormously.
It's amazing that you find an inner strength when you need it.
Hi, Chris. You probably don’t remember me . I joined the forum about a year ago and read all your posts. I was wondering what happened to you. So happy to see you again on this forum. If you read my post to Simon, I had ET when I first started this forum when I started feeling much worse but my hematologist at the time couldn’t figure out why my numbers were so out of whack. So I changed hematologists and was told that I was in the early stages of Myelofibrosis.
Yes Cindy, , I do recall, even though I don't post much now I keep a watchful eye on whats going on. And I'm sure you know that there's much to be optimistic about the future in terms of drugs and better outcomes for those who need a SCT. . I note that you're early stage MF so hopefully you've a way to go and much living to do before you need consider anything radical. I had a poor prognosis at diagnosis but went nearly 10 yrs before I opted for Transplant.
Thanks, Chris. Yes, the SCT would be my last resort. I found my new hematologist on the MPN site and I have great faith in her. She referred me to the SCT specialist who told me I was at intermediate one level. So, I’m just taking it one day at a time and hoping for the best.
Thanks Anag, , I'm in a good place and happy with my lot. . I'm busy just getting on with my life again. Hopefully Simon will be doing just that as soon as he's fully recovered.
Hurrah - thrilled for you. I do hope your good health will continue
Hi Simon, so good to hear your news! It is always encouraging to hear from people who have been through it and come out the other side with some quality of life, well done you! Keep up the good work, Christine
Lovely news. I can honestly say that you are often in my thoughts, and I am so pleased that, despite setbacks, life is looking good for you. Sending you my love and best wishes,
Hello Simon, So very pleased that things are improving. I had been wondering how you were as we had not heard from you for a while. We have amazing Doctors . Take care Love Gill
Hello Simon, Gareth is keeping really well. Due for blood checks in a few weeks. We are going out to Australia in 3 weeks to spend Christmas with him, I talk to him on Skype three times a week. He says very little to us about his blood results I have the same answer each time Mum Im fine. He looks very well Simon and has just bought a four wheel drive to go off roading in the mountains around Melbourne . Thank you for asking Simon Love Gill X
Hi, Simon, thanks so much for sharing your experience. I was diagnosed with post ET MF in September. On my first visit to my new oncologist, she told me a SCt is my only cure but I wouldn’t need one for the next 2-5 years. She sent me to a SCT specialist for a consult last week and he said I am at intermediate 1 and may or may not need one but they put me on the donor list, anyway. So I walked away a lot more hopeful.
It sounds like you had a difficult time but you persevered and came out the other side a healthier person. Your positivity is very encouraging.
Thanks for update, been wondering how you are getting news. Delighted that now going so well
Have you been told why first transplant and, nearly, the second failed to take?
From memory you have not suffered too much from GvHD? Wondering if this is why? Read somewhere that significant GvHD is a good sign if not too significant!
After my first transplant my consultant felt that my body was too harsh an environment for the donor stem cells and that my spleen was soaking them up. We did not discuss it after my second transplant. My first transplant actually took quite well, but failed. My second transplant looked like it wasn't going to take at all. All immunosuppressants were stopped and I was discharged. Developed a GvHD skin rash all over my body and then things started to improve very gradually.
I hope interferon is still working well for you. The reports I have read sound very encouraging.
Simon, this is wonderful news! I had a good friend who, like you, went through a transplant that didn't take and then, long after the expected time frame, it did. Her doctors were so surprised, but after reading your story and knowing hers, I wonder how often that actually happens. Anyway, I'm so glad that you're doing well. Take good care. Kim
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