Mylofibrosis

[MadgeMc]

I was diagnosed with MF in February 2024 and have been on 15mg of ruxolitinib twice a day since April. I am not happy with just waiting, I would prefer to the a transplant and get it cured, but it seems that's not the protocol.

[hunter5582]

While it is understandable to want a potentially curative treatment rather than managing the MF, there is a reason that SCT is not the first choice. There is a risk of mortality related to the SCT itself. This ranges from 15 - 30% based on a number of factors. There are also longer-term risks, including the risk of relapse, graft versus host disease, and more.

SCT is a very good choice for some with MF, but not for all. It offers what can be a potential cure, but comes with intrinsic risks. Each case must be evaluated individually to make an informed decision. This evaluation should be done by a transplant specialist.

Given your preference, it would be reasonable to ask what the criteria for evaluation for SCT are in your healthcare system. This would allow you to better understand the protocol and how to navigate ethe evaluation for SCT.

Wishing you success moving forward.

[MadgeMc in reply to hunter5582]

I understand and thank you for replying.

[socrates_8 in reply to MadgeMc]

Hi Madge...

I agree with Hunter's comments above & would add that often the decision is based upon understanding a patient's current symptom-burden / 'Quality of Life' vs. weighing up against the unknowns of an unsuccessful ASCT. As Hunter mentioned, a great many things can occur, and often do...

Having a successful Tissue Typing (TT) evaluation often helps make a more positive approach to making such decisions.. If in the event, that a perfect genetic match in TT is not available, then it might be best not to proceed rather than risk greater detrimental affects etc.

Nevertheless, best to follow the advice of your medical (MPN) team and learn how best to 'Live your Life' in the interim, in my view...

I am 65 yo, Post ET / MF with ASXL1 and a few other complications... Diagnosed in 2016, and I am still endeavouring to Live the best Life I can...

Best wishes

Steve

(Sydney)

[westlieght in reply to hunter5582]

I to have ET/MF now 18year , about 7yrs ago I asked my specialist about SCT he said he didn’t wish to kill me , said you always hear about the ones who live not the one who die from having SCT .

[hunter5582 in reply to westlieght]

The numbers vary between 10-30% for short-term mortality related to SCT. 20% is what we sometimes hear as an average. That has to be compared to probable survival for each person based on their individual risk profile. SCT is not the right choice for everyone with MF. It speaks to how critical it is that each person receive individualized treatment my MPN and SCT expert providers.

[MadgeMc in reply to hunter5582]

What is a "normal" lifestyle? I feel quite well, apart from the tiredness, I still don't feel ready to go back to work but the thought of never working again is sad. How do you get used to the new you?

[MadgeMc in reply to westlieght]

Yes, that seems to be my haematologist opinion as well. Thanks for replying

[Hidden]

I too have just been diagnosed with MF 3 weeks ago, at this point I am not being offered Rux or SCT although both were talked about initially, further testes are being organised and the decision may change re treatment based on these results. I am new to this but if both are an option I will need to know more about the risks of both, how the progression and prognosis of both are likely to pan out. Hopefully this will help me to make an informed decision. It’s scary having to weigh these things up with little knowledge, I guess if we ask the right questions though it should help. I wish you well on what I know is a difficult journey. Lynn

[MFBMT2011]

I was diagnosed with primary Myelofibrosis 14 years ago, aged 58. I was ir2 (intermediate risk 2) with level 4 marrow scarring. Like you I wanted SCT asap, as I too didn’t like what was going on inside of me. It was different as Rux and other recently produced helpful drugs were not available to complicate the decision. Those available at the time were not highly rated.

Success rate then was 60% with a 20% chance of relapse and 20% mortality rate. Nearing what then was near the upper age limit I chose to go ahead.

Hunter makes some good points. You need to do your research with the transplant team

It’s a tough ride and you need to be reasonably fit, without other ailments, going in. SCT is not suitable for all and indeed not all can find a suitable match.

Like many here, happy to chat or answer any questions as you move forward. Good luck.

Chris (Princess Leia version)

[MadgeMc in reply to MFBMT2011]

Thank you, I have also been told that not all haematologist are MPN specialists. Is this something that worries others? I will ask mine next week.

[Luthorville in reply to MadgeMc]

Absolutely right. And not all specialists are familiar with the data over the past few years. It took me a while to find the right group.

[MFBMT2011 in reply to MadgeMc]

Correct, not all haematologists are MPN specialists but we do have a number of MPN specialists spread around the uk. Likewise SCT specialists.

Chris

[Cazbolac]

Hello. I can understand how you feel but I agree with the other comments made. I was diagnosed with primary MF 10 years ago at the age of 49. I was given a chemo drug to try and when this failed to reduce my spleen and help my symptoms, I was placed on Ruxolitinib. I remained on Rux for 9 years. My end dose was 30 mg daily. During those 9 years I had difficult times of course but I also managed to travel abroad and enjoy my life, albeit within the constraints of having MF. Rux stopped working for me recently sadly and I have been placed on a new JAK drug, Momenlitinib. It is not yet clear whether this is fully helping as it is a very new drug. I have also been asked to reconsider the route of SCT. I refused this previously. I am undecided because of the high risk factors compared to remaining on the drug.

It is not an easy route to take and I feel sure that your MPN team are doing what they feel is best for your condition at this present time.

Work with them and consider what quality of life you can have on Rux before taking such a drastic step, which will have serious effects on your life during the treatment and after. It is a lengthy road to follow and needs very careful consideration because of the risks.

I wish you all the best.

[Bullace]

I do understand your desire to go for a possible cure but SCT does have serious risks. I have felt the same about SCT, but all indications for me have been to continue on the excellent drug treatments that are available - and there are quite a few options. Certainly my quality of life has been pretty good on the whole and I have been on Ruxolitinib for many years and now Fedratinib. I will be moving to Momelotinib as soon as it is available here and keep hoping for the best. There's always the hope of a new drug to manage the disease on the horizon! Hilary

[MadgeMc in reply to Bullace]

Thank you for replying. I am a very active person and I love my job, but I have been in sick leave since March 2024 and I feel right now that I am still not ready to go back to work yet. I get very fatigued easily and I get back pain and knee pains if I overdo it. It's very hard to think that this is my life from now on. I know everybody is different but this is what I find the hardest right now.

[Leighcox85]

I had sct very recently I was diagnosed with primary mf in 2009 at 24 I lived with my condition for 15 years and in that time I got to see my little ones grow up I have other complications like chronic liver disease portal vein thrombosis bleeding in the throat and stomach inflammatory bowel disease lupus and a blood clotting disorder most said sct was not an option I had a tiny chance of survival but I got to the point where I had nothing left to lose I won’t lie sct was hard really hard I had major complications I got vod fluid overload I had sepsis to name a few and was in hospital a long time but iam slowly recovering iam still very unwell sct isn’t something to rush in to you must really research and understand what you want mf is hard but you can live a life with medication rux was amazing for me for along time but definitely do some research

[MadgeMc in reply to Leighcox85]

Thanks for replying. When you say research, do you mean scientific papers or just these forums?