Husband Update

[TM76]

It seems like so long since I’ve updated, but it’s been only a few months.

Husband is doing… ok.

We’ve just received news that they've found a donor for his stem cell transplant and is scheduled to be admitted at the end of next month.

It’s all become very, very real. The kids and I won’t be able to see him in person for approximately 6 weeks.

He’s been having 1 week on / 3 weeks off of low dose chemo, to buy us this extra time.

He was also diagnosed as having the RUNX1 gene. I’ve read this is hereditary.

Any advice on how this is going to look, the good and not so good, is appreciated.

I’m staying strong for my family but would be fibbing if I said I wasn’t scared.

Thank you

[Otterfield]

I'm afraid I'm not in a position to give advice but my thoughts are with you. I am likely to be having a stem cell transplant in the next year or so too. Very, very best wishes to you all x

[Cja1956]

I can’t give you advice but there are a few people on this site who have gone through it. Hopefully they will respond.I also just want to send my support. I understand it’s a very stressful time. I was told in September of 2019 that I would probably need an SCT in 2-5 years. I’ve listened to some webinars of people who have had one, and they all said they even though it’s a difficult process, they are happy that they did it and that while in the hospital, they were well taken care of by the staff.

I wish your husband well. You will get through this. Please keep us updated.

[TM76 in reply to Cja1956]

Thank you so much.

[hunter5582]

Wishing you both all the best. SCT is a very real chance for a better and longer life for some with MF. It turns out one of my colleagues has/had MF had one several years ago. He is doing quite well. He bikes long-distances and has a very positive outlook. Hoping for the same for your husband.

[jointpain]

Really hope it all goes well for you all. Best wishes for a great future.

[MFBMT2011]

Had mine 10 years ago in London. It’s tough, risky but worth it. More than happy to answer any questions. Happy to talk. Can send you my story that covers diagnosis to three months post. Happy to do anything that helps. Chris from Watford, UK.

[TM76 in reply to MFBMT2011]

wow Chris. That’s the best I’ve heard! I’d love to read your story. My husband is also from the UK, from Wrexham.

[MFBMT2011 in reply to TM76]

The only mf transplantee I could find back then was a Canadian named Gord Caster who was twenty years out. He had a transplant from his daughter, quite experimental, that was successful. The link below will take you back to a chat on here with a few transplantees from a couple of years ago. I will pm you re story. Chris

healthunlocked.com/mpnvoice...

[Bluetop]

Pleased to hear you have a donor. Very best wishes to you all such a difficult time, but hopefully with a bright future ahead.

[Aldebaran25]

Cannot contribute with any knowledge, but I send you a big virtual hug and wish your husband the best outcome!

[Threelions]

In my thoughts & prayers at this tricky time. I’m not an expert on STC but have read about many positive outcomes.XXX

[TM76]

A further update… we found out today that his cancer has progressed still and he now has AML. He will be admitted into hospital this weekend to try to stabilize the blasts (currently at 50% in his bone marrow) so they can proceed with the transplant. Sigh. This is hard.

[Jlah]

Hi. Hope it all goes well. Jx