Time to go to transplant

[Hatchie]

Yesterday, my MPN specialist recommended that it's time to do a transplant.

Even though I'm only intermediate-1 post-ET MF (CALR, ASXL1) and generally healthy, I'm refractory to all current treatments, including the latest CALR antibody trial.

My disease is highly proliferative, and there's no way to stop or slow it down.

The best available donor is an unrelated 9/10 match.

Considering all the survival risk factors, the only one I can control to improve my chances of survival is to undergo the transplant sooner while I'm still healthy.

I don't really have a question. I know this is my only real chance of a cure and of seeing my kids grow up, being only 44. I'm just sad and, to be honest, scared.

Craig

[Cat1001954]

best of luck to you think positive vibes x

[dbus1417]

I am praying that whatever path you take, it works and you get through it.

[Spanelmad]

That's probably the best answer "to do it whilst your healthy", eat well and get as for as you can.Goodluck, were all here when you need us

[Old_Coger]

good luck, being fit and healthy at the start should be a big positive

[JojoWonder]

Just sending you lots of positive vibes ❤️

[MFBMT2011]

It is daunting starting the process but just be positive about the outcome, and confident in your medical team. Dodging anything your four children might pick up and bring home will be a significant challenge while you immune system is compromised, so they will have to understand and help you.

My SCT was 10/10 unrelated 13 years ago. I shared my story to help you see the challenges that are coming.

Happy to chat or answer any questions if I can help

Best wishes

Chris (with Princess Leia stem cells)

[Hatchie in reply to MFBMT2011]

Thanks for sharing your story. I'm not worried about the recovery, how ever hard it might be. I just don't want be one of the 50% that don't survive.

[lizzziep]

Just wishing you all the best 🙏🏻

[Nickthedevil]

Sending best wishes for success of your transplant 🤞

[JP1952]

In your position I would make the same decision. It's understandable that you're scared for you and your family and there's nothing wrong with that. Think I would try to distract scarey thoughts by focusing on positive things to do to get in best health position . Everyone on this forum will be rooting for you so please keep us updated. Best wishes.

[Hatchie in reply to JP1952]

Thanks it helps to know as least someone thinks this is a good idea.

[RedCardRob]

We are all with you C. Best wishes.

[KLCTJC]

sending prayers and hope your way. Keep us posted.❤️

[RoundTheWorld]

Wishing you all the best. As others have said your emotions are completely understandable and we will all be rooting for you.

[SouthSideA]

Like many others, I am thinking of you and sending you the very, very best. I am also your age, and I know of several people who have had successful transplants, and they are now cancer free. So you can do this, and you will. Stay positive l, and please reach out to any of us if we can support you in any way.

[Hatchie in reply to SouthSideA]

Thanks. I've never really felt that I was a cancer patient. I don't even look sick. It's crazy to think one day I too may be cancer free.

[SouthSideA in reply to Hatchie]

You may indeed. Please do keep in touch. We are here for you.

[GardNerd]

We will all be thinking of you and supporting you on this journey. I like what you said about controlling what you can control — doing it while you’re still healthy. I’m sure your wisdom and courage will serve you well in the months ahead.

[Bluetop]

Wishing you all the best on your journey and glad to hear that you are starting from a healthy position, although I am sure this must add to the difficulty of your decision.

[Hatchie]

Thanks everyone for your kind messages and support.

I'm having moments when anxiety just hits me hard. Luckily I've have great cancer psychologist and I have developed the skills to process these thoughts and emotions....

I worry about how it will impact my family and the burden of 24 hr care. I worry about coming home after the transplant to a large family with school aged children. Any tips on returning home? Lessons learnt?

I will try to keep everyone updated. Before commitment I asked my mpn specialist to survey the director, professors and top doctors in the transplant team. If the vote come back that now is the best time then I'm doing it.

As informed as I am, I will never have the formal education or the years of clinical experience that the doctors have. I have challenged and complained when I have been uncertain. I have found the gaps in the academic literature and clinical practice and experience. It's hard but I'm at the point where I have to trust them with my life.

[hunter5582]

Wishing you success in your course of treatment. Thoughts and prayers headed your way.

[Hatchie in reply to hunter5582]

Thanks. I was wondering if you were going to respond. Your replies often contain great knowledge and wisdom.

You are right again. Let's just pray it works out.

[CanadaG]

Hi Craig, I wish you all the best with this curative treatment. Stay positive.

G

[Bullace]

All the very best to you. Stay positive as much as you can. Think about the fact that this is a potential cure.

[ETinNYC]

Craig, I'm your age and also have young children and can imagine all the thoughts whizzing through your mind. When I was first diagnosed with ET, my primary concern was for my young children and my husband. I didn't want to leave them without a parent/spouse and equally didn't want to be a burden. My heart goes out to you!While medicine is very much a science there is also art to it. Your team will have seen others in a similar situation. They understand the risks (and benefits), and I don't believe they would recommend a SCT unless they thought it best for you.

Yes, there are frightening statistics that come with SCT but there are also amazing stories (several amongst members here) of cures and lives full of happy memories that SCT made possible.

Focus on thinking positive thoughts and work with your care team to have all your questions answered, so that you feel comfortable with whatever decision you make. As has been said already, we're here for you. Hang in there!

Sending bigs hugs from NYC.

[Hatchie in reply to ETinNYC]

Thanks for your message I appreciate the support.

While the team here is very experienced. Due to being a rare disease and me being young, I'll be the first MF transplant my age that they are aware of. I guess that a part of living in Australia, with a small population there just aren't that many cases.

[socrates_8]

Hey Craig...

I hope your talking with Warwick has helped a tad...

Best wishes

Steve

(Sydney)