It has now been confirmed that my ET has progressed to MF. My haematologist has put me forward for a SCT, if tests confirm I’m well enough. I have also been put forward for for Ruxolitinib. I feel very anxious about it all, I believe that MF is life-limiting, but also know that a STC is a long difficult process, although, if I have a choice I think that would be my best option. I do feel well at the moment. I know some of you have been / are going through SCT at the moment. I would be grateful for anyone’s thoughts please.
Best wishes,
Shirley
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SRH55
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Sorry to hear about the progression into MF. It is fortunate that treatment for MF is progressing. There are more options now than just a few years ago and even more in development. Wishing you all the best as you more forward on this journey. Please know that you are not alone.
Hi Shirley, if you don’t get more answers from the stem cell folks, you should consider posting again with the subject in question form. Like “Should I get a SCT? That will make it clearer what input you’d like. I encourage you to get an MPN specialist to oversee your treatment as soon as you can. I’m sorry but I know almost nothing about SCT. I’ve had MF for over 8 year but have significant other medical problems so not likely a candidate. Best of luck to you. Katie
Hi Katie, thanks for your reply, I see I have a few more replies now. I do have an mpn specialist from the list that has been posted before & will see her Friday.
I have every sympathy with your recent diagnosis and subsequent feelings of anxiety. I have made several posts on here about my experiences with my progression from PV to MF and the various stages that followed through to SCT and post SCT. Bearing in mind that we each differ in our overall risk factors such as age, donor match, etc you may find some of my thoughts and experiences helpful with your own situation. Sending you the very best of wishes.
SCT is tough, has its risk, but is worth it. I had mine 11 years ago aged 58. There are several others here through it and some currently going through the process who can help. You have steps to take before making the decision. As you already pointed out your basic health would be checked out as SCT is a demanding process on the body. The doctors will need to find a matching stem cell donor for you which can be family or indeed anyone worldwide who might match. We’re all mongrels with mixed backgrounds and sometimes turn up matches in strange places. Cells can be moved around the world.
There are several SCTers here who will help with questions so follow the process with the medical system and ask away when you need to. I’m happy to talk, answer questions, share my story (diagnosis to 3 months post SCT) whatever; as will others.
One thing to help us and this applies to everyone. Please give us a clue to help us reply. Rough age group (90+ don’t go for SCTs 😀), country (medical systems and treatment availability can differ), county/state (might help point to a treatment centre/specialist). We should include these simple basics in our Bio. I always try to look these up before answering
Best wishes
Chris (Princess Leia version as I have got donated female stem cells running my male body post SCT. )
I'm in the same position as you. I progressed to MF about 18 months ago and, like you I've been considering a SCT. I got a IPSS score of various sorts predicting a median life span of anything between 3 and 14 years. To begin with I thought the span of about 9 years seemed ok(im69) but my body is not responding well enough to ruxolitinib and my spleen is large. My low platelets didn't allow them to raise the rux high enough so I'm changing to fedratinib soon. Originally I had thought I would not have a SCT but have come around to it and am going through the preparatory tests to see if they'll do it. I found it quite exhausting weighing up the potential problems, ill health ,life span both with and without the transplant. The decision not just a physical one but psychological such as your view of uncertainty, risk etc. Good luck whatever you decide
I know it’s going to be tough if I go through with it. I have had some tests & will get the results on Friday. I have a sister, but she has health issues, so I wouldn’t want her to be considered as a donor.
I am 67 & live in England, my haematologist is on the list that has been posted on here before.
If I am able & do decide to go through with it I would be interested to hear your story - good & bad bits!
I often refer to myself as a transsexual transplantee and tease other transplant female friends who have male stem cells. My donor, Sarah, is now my friend and I show her DNA too. Good luck to both of you.
Depends. In uk you can after two years if both agree. We met with Sarah and her family for dinner and keep in touch. In NZ you are not allowed. A kiwi friend of mine got her cells from Germany but was not allowed to follow through. I have several SCT friends who know, and have met, their donors. Several in USA got their cells from Germany
Well my experience is VERY recent! I am on day +35 and finally seeing some recovery of my blood counts.
I can't deny it has been a difficult time with extreme wearing chemotherapy with a range of nasty side effects. And of course it's not over yet - there are twice weekly follow up appointments and the possibility of readmission at some point in case of infection or other problems.
The risks are high so you need to carefully weigh them against the risk of NOT having it.
Before starting you need to be as fit as possible and try to put some weight on.
Take your time with the decision and good luck, Jennie
Thankyou Jennie for taking the time to reply. It’s good to know that your bloods are improving, I hope this is the turning point for a full & good recovery ❤️🩹
I’m glad your blood counts are on the way up now, I’ve been following your progress.
I’ve just found out I’m eligible for a transplant & will see the coordinator soon. Like you say there is such a lot to weigh up. My haematologist has told the bad points about a SCT, but as I am mpl positive & have another rogue gene, she says it’s more likely to progress to leukaemia! A lot of thinking to be done, thank you for your reply.
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Sad day...progressed to MF
Anyone with Post ET/MF & Budd Chiari?
ET diagnoses, Hydrea and transform to MF
