MF transplant - successful stem cell boost - MPN Voice

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MF transplant - successful stem cell boost

Simon96 profile image
53 Replies

Hi All,

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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Simon96
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53 Replies
Aneliv9 profile image
Aneliv9

This is perfect for you and encouraging for all the community. Do you know what was your mutation?

Simon96 profile image
Simon96 in reply to Aneliv9

JAK2+

Aneliv9 profile image
Aneliv9

How are things 1 year after a transplant? Also what doctors think about life expectancy after transplantations??? I don't have a clue

Simon96 profile image
Simon96 in reply to Aneliv9

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

Aneliv9 profile image
Aneliv9 in reply to Simon96

Maybe a silly question but is it possible in case of someone who relapses after stem cell transplantation to have another one again??

Simon96 profile image
Simon96 in reply to Aneliv9

Yes, some do have another transplant

fee13 profile image
fee13

My word you have stubborn stem cells lol. Congratulations, this is awesome news.

Simon96 profile image
Simon96 in reply to fee13

Thanks, as the old saying goes... 'good things take time'

MFBMT2011 profile image
MFBMT2011

well done. You’re now eight years behind me!

chris

Simon96 profile image
Simon96 in reply to MFBMT2011

Thanks Chris, sounds good to me ...cheers, Simon

Maisie10 profile image
Maisie10

That’s such good news for you.. Best wishes x

Simon96 profile image
Simon96 in reply to Maisie10

Thanks

mhos61 profile image
mhos61

Oh Simon, I am delighted to hear this positive news. What a relief for both you and your family.

I was wondering how you were doing, so thanks for the update. Your story is encouraging for the MPN community.

Best Wishes

Mary xx

Simon96 profile image
Simon96 in reply to mhos61

Thanks Mary

MPort profile image
MPort

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

Simon96 profile image
Simon96 in reply to MPort

Thanks Mairead. You are right, it has not been easy. I hope I haven't understated things too much. It is a bit of a kiwi (NZer) trait

Marossi profile image
Marossi

A long journey - but you got there in the end! Thank you for sharing.

Simon96 profile image
Simon96 in reply to Marossi

Thanks

harleydavidson profile image
harleydavidson

Hi Simon. That is wonderful news. I hope all keeps going well for you. Mel x

Simon96 profile image
Simon96 in reply to harleydavidson

Thanks Mel

JediReject profile image
JediReject

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)

harleydavidson profile image
harleydavidson in reply to JediReject

Hi Chris. How are you doing? I've missed you. Mel x

JediReject profile image
JediReject in reply to harleydavidson

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.

Hope all well in Mels world xx

harleydavidson profile image
harleydavidson in reply to JediReject

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

in reply to JediReject

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

JediReject profile image
JediReject in reply to

Thank You Christine, , , the bugs are hard to avoid and harder to shift. Im considering wearing my mask when out shopping etc to keep em at bay. .

Regards

Simon96 profile image
Simon96 in reply to JediReject

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

Aneliv9 profile image
Aneliv9 in reply to JediReject

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

JediReject profile image
JediReject in reply to Aneliv9

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.

Hope this helps a tad. -Chris

Cja1956 profile image
Cja1956 in reply to JediReject

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.

I wish you continued good health.

Cindy

JediReject profile image
JediReject in reply to Cja1956

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.

Good luck and keep well . Chris

Cja1956 profile image
Cja1956 in reply to JediReject

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.

Take care and don’t be a stranger.

Cindy

Anag profile image
Anag in reply to JediReject

I’m also really glad to hear from you, Chris. Thankful you are well. Keep well and keep in touch! Anag

JediReject profile image
JediReject in reply to Anag

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.

Cheers Chris

Anag profile image
Anag in reply to JediReject

😁

Wyebird profile image
Wyebird

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

pj1963 profile image
pj1963

Hello Simon,

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,

Paula

babbittybumble profile image
babbittybumble

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

Simon96 profile image
Simon96 in reply to babbittybumble

Thanks Gill. How is your son doing? I hope things are still going very well for him

babbittybumble profile image
babbittybumble in reply to Simon96

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

Simon96 profile image
Simon96 in reply to babbittybumble

Hi Gill, that's great to hear. How lovely that you will be spending Christmas with Gareth. Safe travels, Simon

tracey13 profile image
tracey13

Sounds like you've had a tough time . I'm pleased things have finally started to work for you Simon.

My husband has early stages of MF. He's hoping he won't ever need a transplant or for it to be his very last resort x

Simon96 profile image
Simon96 in reply to tracey13

Thanks Tracey. Best wishes to you and your husband

Cja1956 profile image
Cja1956

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.

I wish you all the best.

Cindy

Simon96 profile image
Simon96 in reply to Cja1956

Hi Cindy, looks like your medical care is in very good hands which must be very reassuring for you. All the best to you too

Meatloaf9 profile image
Meatloaf9

Congratulations, absolutely great news, live long and prosper.

Paul123456 profile image
Paul123456

Simon

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!

So pleased things go going well

Best Paul

Simon96 profile image
Simon96 in reply to Paul123456

Hi Paul,

Yes, you want some GvHD, just not too much.

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.

Best wishes, Simon

Anag profile image
Anag

Wow Simon!

You’ve been through so much and there is finally light! Congratulations! Continue to do well and keep us informed. Anag 🙂

ksos profile image
ksos

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

Simon96 profile image
Simon96 in reply to ksos

Hi Kim, thanks for sharing that info. I am now wondering too. Best wishes, Simon

Judi150 profile image
Judi150

Simon...you’ve been through so much. .....massive congratulations and may your health continue to improve.

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