Transplant Route

[Cazbolac]

Hi everyone. I was diagnosed with primary MF 9 years ago and have been relatively well managed on Ruxolitinib for most of that time. Recently however my platelets have been consistently low, 37, 56, 59 and about same now. My spleen has enlarged again and I have been put on a reduced dose of Ruxolitinib and steroids. My consultant is looking to get permission for the new drug Momelotinib from the NHS but not sure how that will work out. I don't know for example how long I could be on this drug or if it will even help me. So I am also being asked to seriously consider the transplant route. I have to be honest I am absolutely terrified at the thought and really don't know what to say. Could anyone on the forum, who has had to consider this and actually gone down this route, give me some advice on the sort of questions I should be asking to help me make this decision. Is it as long and arduous a journey as I imagine?Any advice would be welcomed.

Thank you in advance.

[MFBMT2011]

there are several here who can help and no doubt will chip in. I celebrate 13 years since mine next month and don’t regret a second. It’s a tough ride and has an element of risk but so does doing nothing. I was in hospital for 27 days and then had regular appts for 18-24 months, with the intervals between growing steadily. Happy to answer any questions you might have.

Chris (Princess Leia version).

[hunter5582]

It is understandable that you would be hesitant about SCT. It is a major decision to make. WHile potentially curative, it comes with significant risks. Looking at other options for MF with thrombocytopenia is very reasonable.

Momelotinib has an indication for MF with anemia. Pacritinib has an indication for MF with thrombocytopenia. Momelotinib may also be better for MF with thrombocytopenia than ruxolitinib. Dr. Harrison provided an nice brief summary on this topic. youtube.com/watch?v=HDf15Il...(Not working as expected?)

Our wonderful friends at MPN Voice just announced that NICE is recommending momelotinib for MF patients with anemia. healthunlocked.com/mpnvoice... . It is certain that the advocacy from MPN Voice helped lead to this approval. Folks in the UK and the rest of us are blessed to have such terrific advocates working on behalf of the MPN community.

I am sure others who have made the decision regarding SCT will weigh in with their experiences. Wishing you all the best as you move forward.

[Smdg]

hi. I had a transplant in October. I didn’t have a choice really. It was that or progress to AML which has such poor prognosis. It is a strange journey. I was three weeks in Kings then had to spend a couple of months close by for twice weekly hospital checkups. The target post transplant is 100 days. It seemed to take forever to get to that point. I did get down and I had loads of fatigue and tiredness. You will get psychological support if you need it. It helped me get through. Loads of procedures, transfusions and drips. Really long clinic days which were boring and waiting round for reviews and unexpected procedures to start. . I stayed with a friend thankfully as I imagine I would have been in some accommodation on my own. But I was still lonely and very homesick for my family and friends. . I couldn’t see them as I live in the Channel Islands. But on the whole, now that I am 140 days post BMT I feel incredibly grateful for the extra chance of life and that I have so far not endured too many problems. The care given and attention has been incredible. Don’t be scared. Just treat it as a life experience. Happy to chat any time if it helps. Sue xx

[Scaredy_cat]

I had the same problem as you - large spleen and low platelets. The doctor was hoping to use ruxolitinib to shrink my spleen but my platelets got too low. She tried fedratinib but by this time I'd opted for a sct. It was a very difficult decision. I weighed up by future life with and without a transplant. If you want to read more about that, look at my posts from late 2023. At that time, the symptoms weren't too bad but I was told I'd get worse. One of my pleasures was taking out my friend's dogs and I asked how much longer I may be able to do that. The answer was about 2 years. This rather than the median time till death was the clincher. I had my post sct anniversary in January and I'm feeling fine. I had my spleen shrunk by radiotherapy just before the chemo and then the transplant. Like SMDG I spent about 6 weeks in hospital a d then a few weeks in a flat near Bristol that the hospital provided free of charge. I had my husband with me. The physical side was horrible and my mental side took a real battering. Please be aware of that. I started antidepressants later than I should. Things really started to improve by about May so not a quick process but I think I was better than I would have been without the transplant by about October. Do let us know what you decide, read some of my posts from the last year, and ask anything you like if you want

[Wyebird]

hi, I’ve never been in your position and I hope I never will, however I feel you should grasp this opportunity and start the process. I really don’t know how long the process takes but I believe you have to find a donor. You can pull out at any time.

This has to be right for you and what ever your decision, it will be the right one. I do hope you get the answers you are looking for. Sending hugs.

[SRH55]

I had a SCT on 4th August last year, I was in hospital for 4 weeks, home for 6 days & back in hospital for 13 days. I live near the hospital which was better. I had weekly hospital outpatients appointments, which have now gone to fortnightly.

Having a SCT was a big decision, I was diagnosed with ET in 2009, I was finally diagnosed with MF in October 2022, MPL + & also AXSL. I asked my consultant what she would do about a SCT, she said she would go ahead, another one said it was my best chance. You will need support from family & friends & need to be very careful about getting any infections. You can get a lot of information from the Anthony Nolan website, make a list of any questions you may want to ask your consultant - what foods to avoid, when can you see close family members who don’t live with you. It’s a tough journey but I’m feeling pretty good the moment, & so far feel it is as the right decision. I walk (with my husband) for about a mile most days. When I first came out of hospital I was unbelievably tired, luckily I have good family support.

Good luck & sending my very best wishes, Shirley

[Bullace]

This is a difficult one. I have primary myelofibrosis and two years ago was assessed for a transplant but found not to be robust enough (my kidneys are not functioning that well) and also just too generally well in myself- able to walk about 3 miles on the flat and so on. So I was refused the option and now I am too old at 71. Since then, my health has been not so good as I was moved to Fedratinib and the dose was too high and I became transfusion dependant. There is no alternative to this drug (rux stopped working for me) so this is my only option at the moment. I am better now on a lower dose but my spleen is growing again. I was somewhat relieved when told I couldn't have a transplant because it does seem such a tough journey, but now I might choose differently if given the option! The future for me does look a bit bleak unless another drug option appears here in Scotland.

Warmest good wishes to you in making this rather momentous decision. Hilary

[Cazbolac]

I would like to thank everyone who responded to my post regarding SCT. I really appreciate the advice and background information. I really do not know what to do but it certainly helps to know that I am not alone. Decisions such as these are so hard to make and I do not know if I am brave enough. I will update my post when I have more news. Thank you everyone.

[Dodders]

I had my SCT nearly 5 years ago. For me personally the decision was, to put it bluntly, a no brainer given my prognosis and deteriorating quality of life. Whilst I was under no illusions about the risks I concluded that the alternative was sufficiently bleak that it amounted to a Hobson's choice. I was told it would be arduous and it was. But writing this now I wholeheartedly can say it's the best decision I ever made. I can only offer you my very best wishes for which ever path you find yourself choosing.

[merlisa]

Hope you are well as previously.

Momelotinib and Fedratinib, these 2 medicines are suitable for you. Don't worry, Rux is the target medicine, which will eventually resistant or intolerant for onebody. There are many medicines available now, including various clinical medications that you can try. You haven't reached the point where transplantation is necessary yet.