I have just been told my PV, after 7 years, has progressed to Mylofybrosis. Still waiting on some Genetic marker results but it is what it is. I have been on a high dose of Hydroxy for a long time (1500mg Mon-Thur and 2000mg Fri-Sat). My platelets have been stuck around 750 for ages. Recently my Hb has started to drop which triggered another bone marrow biopsy and the current situation. We are talking about Rux and Momelotinib but are waiting for Guys to go over the results. I'm 45 and, for all intents and purposes, not suffering. I work full time including lots of travel. I guess I just wanted to hear from anyone I'm not on a ticking time bomb now it's progressed. I'd like to think about a SCT as to not have to think my life may be limited would be amazing, but I am also aware it's a big thing. Anyone who's gone through that at around my age how long till you were back on your feet? Sorry, bit of a jumble. Just trying to take it in and as I said get some perspective.
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Joerp
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I’m 48 and would have a similar mindset to you. I have inquired about getting a SCT to the point of having an appointment with the team to learn more. I think that step is worthwhile to educate yourself about the experience in addition to learning from others here. I have 2 friends who went through it successfully, both of whom were younger than me. Both did very well and are back to normal lives now, though they do have plenty of doc appointments.
In any case this is still a big decision, and a personal one, depending on kids and other considerations. I can totally understand your thought process.
One more thought...I've been looking up combination of Jakafi and Besremi data. There's not a lot. But have a look at this research - pmc.ncbi.nlm.nih.gov/articl...
The instances of those with MF on both of those drugs had 44% with complete or partial remission. It's a small sample size, but still...
Hi, I had ET in 2005 (I was 40 years old). 2014 MF. 2023 progression towards AML. So after Chemotherapy for bringing my blasts down (lower than 5%). October 4 SCT. Now I am 59 and since beginning 2025 working parttime, but traveling again a lot. I should have been taking the same decision to undergo STC again.
I had mine at age 58, fourteen years ago. Currently in France skiing. I was retired at the time so didn’t have to return to work but felt better and possibly able to after a few months. That is based on my type of work which was office based. However, having a compromised immune system for a period afterwards might affect you depending on your line of work. SCT is tough and risky but worth it as many others are likely to comment here. It is not always needed right away but shouldn’t be left to being a last resort. Do your research with the medical teams and be guided by their experience.
i too progressed to mf c2021/2. I was on ruxolitinib to try and shrink my spleen and then fedratinib as my platelets were getting too low. It was recommended to me to have a sct which I did in 2023 aged 70. I was in all sorts of a quandary about whether to have it or not. So you may have many years to make your mind up. There are a number of prognostic tools to estimate your life expectancy, eg DIPSS. These weigh up things like age, blasts, blood counts, symptoms etc. When my expectancy was 14 years that seemed OK at 70 but eventually they said 3 years plus quality of life would deteriorate. A sct is a big thing with a lot of chances of mortality, gvhd, infections etc so not something to do lightly. So far I'm doing well. The first 2 months were horrible. I felt fairly good by 8 months and soon felt I was back to my normal self. However, I am 72 and retirretired so my level of activity is less than someone your age.
you could look at my posts from 2021 onwards to see my thoughts.
There is a Facebook group for sct people and one for mf and sct. They may give you more info.
First of all, sorry to hear that you have progressed. I also progressed from ET to MF in 2019 and I’m now on track for an SCT in May. As far as progression for MF, I think part of it depends on what you first diagnosed with, for example, intermediate one , two, or high risk. I had the same as you, platelets and dropping hemoglobin. I was first diagnosed at intermediate one and now I’m intermediate 2/high risk and that’s why they want me to go forward with the SCT. But I’m older than you at 68 and the doctors are telling me if I don’t do it now I’m going to lose my window of opportunity. Just make sure you get a good Mpn specialist. There are several good treatments out there that you can try and also clinical trials. Also, don’t be afraid to get more than one opinion about treatment.
Hi, I've posted a number of times about my experiences with PV, its transition to MF and a subsequent successful SCT; those posts should be accessible through this forum and I hope you might find them informative and maybe even helpful. Whilst the rate of disease progression and response to treatment is variable for each individual, for my part I came to realise that I was, to all intents, faced with a somewhat stark but nonetheless challenging choice. Of course I also count myself incredibly fortunate to have had such a choice available. I was 57 and so I do hope that you will not think my commenting on your situation is inappropriate. For the majority of patients facing such a situation as you may now be entering upon, my sense is that, based on the overall knowledge and understanding you will surely be given, the path is well signposted. I wish you well.
Hi Joerp, I am 42 and in a similar position to you. I have PV + early mylofibrosis. I am starting interferon in the next few weeks but like you I am relatively well and work full time. Feel free to message if you would like to chat, I don’t have answers but it’s comforting to know there are other people in similar situations.
I progressed to MF from PV in 2023 when I was 45. I was doing well after the doctors put me on Jakavi but decided to go ahead with the SCT in Sept 2024. I could have waited a while long while longer but decided to go for it. I went into it feeling fit and well and I’m now 4 months on from my SCT. I’m feeling good and I’m working again (from home). Everyone is different of course but it felt right for me to go for it sooner rather than later. Still time for complications to arise for me so we’ll see, but I’m pleased with my progress so far. All the best
so sorry to hear your news of progression I have primary mylefibrosis I was diagnosed at 24 years old but lived with it for 16 years I had a sct last April and I am recovering still unfortunately I have other chronic illness and a lot of complications so mine has been difficult but we are around the same age i was 40 last Saturday so if I can help you in anyway or you want a chat anytime even if it’s just to vent I can give you my number
thank you all who have replied. It really does mean a lot.
I think what I am most hopeful about is that there is hopefully time before any big decisions have to be made and that you can live with MF for many years. I, for some reason, had put a very short period before having to do something.
I've got my clinic at Guys in a few weeks where we will go over new drugs and options so I hope we can set a plan out then.
To all those who have offered an ear thank you. I will contact you I'm sure.
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