Anyone turn down a stem cell transplant?

[LongETinUS]

I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML.

I'm finding the decision making to get the SCT very difficult. My heam/onc Dr says get it asap while I am still healthy. The transplant Dr only ever talks about it being a cure and never mentions the morbidity or the years of recovery even if it is successful. Neither Dr will/can say what changes in the blood tests, which seem stable, or BMBs would indicate a need to move to get the SCT sooner rather than later.

My gut feeling is that I don't want the SCT even though I know the outcome will not be good. I know it sounds nuts but that's what is going around in my head.

Do any of you have any thoughts on this decision making process?

[Dodders]

I had my SCT done 5 years ago this coming June. I've posted on this forum about my SCT journey, you may find those posts interesting if not helpful. I think the fact that you're currently doing ok makes your decision an especially hard one. I've heard that patients in your position often ask what would their Dr do. It sounds as if yours would have the SCT. I was given what seemed like a fairly brief window of an opportunity to have the transplant done and so I took the chance to climb through before it closed. Which ever path you choose I most certainly wish you all the very best.

[lizzziep]

I am also post ET MF, I am similar to you but too old for transplant. (71)

I asked what to look for in my blood results to check if any progression is happening. I was told increase in white blood counts, and increase of blasts in the blood. Hope that helps, and you continue to be well.

[dnaleor]

I was in the same situation last year also ET MF with progression towards AML (11% blasts).

Also I had lots of fear, but always thought, this is the only path to follow with prospect for a positive outcome at the end. Although the last 11 months were tough I try to look forward and not thinking too much at the possible risks. Also our team of hematologists were only thinking to follow this therapy. I was on hydroxyura and not possible to switch to Jakavi anymore.

Now after 2 times intensive chemo and HSCT (04/10/2023) I am on Jakavi 2x10mg.

I also have been thinking and reading a lot and thinking negative, but always cycling (45 minutes per day) on the home trainer in the hospital . This kept my mind up.

Anyway I wish you all the best!!!

[Scaredy_cat]

I was in your position about 18 months ago. If you read my old posts you'll see the difficulty I had wrestling with the decision hence my user name. Have you been given a survival score for your MF? Mine kept changing depending who I spoke to. When it was 14 years, that was ok; when it changed to 3 that wasn't. I also asked about quality of life of those 3 years and that was the decider for me. Like you I was in good general health. If I'd had loads of symptoms it may have made the decision easier. I was 70 when I had my SCT and by about 8 months later I felt back to normal, hopefully with MF not to return or leukaemia. The actual process was horrible as a result of the chemo and mentally I found it hard. So if you do decide to go ahead, don't be afraid to ask for anti anxiety drugs if you need to.

Good luck whatever your decision is

[beetle]

those of you who have been in this forum a long time will have heard my doctor’s take on this decision. She said deciding is a bit like standing on the edge of a cliff. You can jump now and hope your parachute will open - a successful transplant. Or you can wait for a later date and you will get blown off the cliff and this time you won’t have a parachute! A difficult decision!

I did ask the transplant doctor if I was her mother would she recommend I go for it. Without hesitation she said no. That was 10+ years ago and I am now developed AML but I do not regret my decision. The success rate for transplant has improved over that time but it is still not a given that you will survive.

In that time I have had the privilege of meeting and watching the early years of 4 grandchildren. I have four sons who are super supportive. One recently bought me a car and another comes to stay during chemo week and takes me to the hospital daily and makes a meal in the evenings for us. My partner has dementia so is unable to do those things

The decision you have to make is a very personal one but try not to succumb to pressure from other people or you will not find peace with your decision

Very best wishes, Jan

[Inca in reply to beetle]

I remember your long time ago post re transplant.I am MF now for some time P V previously &. changed to Rux from Hu that started to make me poorly after 11 yrs.Too old for transplant.I had transfusions of blood & plaquetaire now I have injections( can’t remember the name)!done by my nurse who has come to our house for pris de sang etc for 14 yrs.Think the injections boost the spleen etc to make red cells….must admit now I just hope my good Dr & Consultant know what is best for me & try to get on with life.Not without stress I admit,have my husband for his excellent support,my superb G S D dogs who really understand my bad days.My daughter comes from U K when she can even if just flying in for 2 days clutching lap top to work from here🫢 So I am a lucky old lady.You are too Jan,so keep going ,keep fighting the M F,maybe we will get a 100 yr B/day card from King Charles! 🤸‍♀️🚗🥰Sally

[beetle in reply to Inca]

hahaha! He’s two years older than me. My 100th birthday card might come from prince William!!! Xx

[AnBee]

Hi

I have considered SCT and decided absolutely no. We all have different circumstances and situations in our lives. I am now on my own with children some estranged and some not in my country. I had a very difficult marriage breakdown 4 years ago that has exploded and distanced our whole family. For myself with the research I have done the longer term outlook is not that good ie return of MPN and or other serious side effects from the chemo inducing all other sorts of potential issues. I have asked numerous people I know who are in the medical industry about SCT and all have said that it is one of the worst interventions in Cancer treatment. Some are still fine with that risk and some make it through fine with the right support and necessary mind set. The other thing for me is the fact I had a near death experience due to blood loss at the birth of my twins and that experience was so supremely beautiful I have absolutely no fear of dying. With changes beginning to occur in my white cells and blasts I may be there sooner than I think! Good luck with your decision, it is uniquely ours to make and best wishes for whichever path you take.

[KevinJH]

This has been one of the most difficult threads I've read through on this Forum.

I'm just shy of 68 yrs old with Post PV MF Level 2. My local consultant is a through-and-through SCT advocate, however, the BMT consultant I've met has said nope, we'll wait and watch until you're level 3. This is with my brother being a 10/10 match and confirmation that they have found two other 10/10 matches. In the meantime I've just this week started on Momelotinib (my issues are with high platelets and anaemia). If the Mom. does what it says on the tin i.e. slows or even halts the MF in it's tracks and takes me past the age of a BMT.....? Hmmmm, seems I can't say any more just now, perhaps I'll come back to it later, sorry......

[Cja1956]

I’m in a similar situation. I am also post ET MF. I was told in 2019 that I would probably need a SCT within 3-5 years. Last year I consulted with a transplant specialist in Boston. I had 3 different doctors tell me it was time. They even found me a donor, then they switched my medication from hydroxy to Jakafi. Many of my symptoms improved and my doctor in Boston told me he wants to hold off on my transplant. My hematologist down here in Florida wanted me to go ahead with it while I’m still healthy. I’m getting one more opinion maybe from Sloane Kettering in New York, but I have a feeling I’m not gonna go through with it. It’s an extremely difficult decision. I’ve had several telehealth visits from my Boston doctor and he has said that he thinks now I have comorbidities and he thinks it’s more risky to have it then not have it.

I wish you all the best.

Cindy