I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was in my late sixties with no other serious health issues. My haematologist was keen for me to think about a stem cell transplant and I was booked to speak to the transplant centre in Bristol about 40 miles from my home. Those of you that have read previous posts of mine showed how much I dithered. The transplant process has a low median survival as well. I felt in the middle of the frying pan and the fire. Anyway I opted for the transplant which I had C 31 January this year, just after my 70th birthday. Just previous to that I had to have radiotherapy for to shrink my spleen because this can be a problem after the transplant, followed by c 5 days of chemo to kill my own bone marrow. I was between 50-60% fibrotic. I was in hospital for about 6-7 weeks. I could have been out sooner. Because I was > 30 mins from the transplant centre, I was discharged with my husband to a nearby flat, all paid for by the NHS/hospital. A fter day 100 last week, I was allowed home. The improvement post hospital and flat discharge has been exponential. My blood counts are really low but i feel very good and am walking, active and don't feel tired. I've been told that patients who had MF are slower to recover because of restricted space for the stem cells to multiply.
Neutrophils c 1.7, haemaglobin c 82, platelets c 30
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Scaredy_cat
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Congratulations! Glad you are now at home and can feel more normal. I am sure you still have a ways to go but sure you will do fine. You are undoubtedly a tough lady. Best to you going forward, keep us informed of your progress.
Pleased to hear you went ahead with the transplant. It’s not an easy decision, and the ‘dithering’ is understandable.
Hopefully, you’re over the worst now. There has been a lot of members on the forum in recent years who underwent successful transplants. I’m sure they’ll offer their support going forward.
Good luck in your recovery and happy belated 70th birthday greetings x
So pleased you're doing well post SCT, , , as you know it can be a steep climb back up with a few falls and stumbles along the way but eventually you reach the summit and start living your life again. It's not easy to explain or fully appreciate unless you've lived through it. Suffice to say my summit was more Ben Nevis than Everest but 7years on it feels like Everest nonetheless and I'm more than happy. I hope you continue to gain strength and make a good recovery.
Congratulations! It's such a lovely feeling when you get back home.
Some peoples counts are very slow to recover. It is how you feel that is important, not the counts. You may find they fluctuate also, which can be a little disconcerting on the down side. Look after yourself and keep active. Well done!
I'm so glad that you are feeling better and those blood counts are looking really positive, quite similar to mine at the same stage. I've found that, for me, platelets have been the slowest to recover - still around the 70s after nearly nine months, but the team doesn't see that as a problem. You have been lucky to have been given a flat - I had a 130 mile round trip twice a week at first! Things will get better and better for you - take care, Jennie
Thank you, it's going well so far and my consultant is pleased. I now go for a check up fortnightly which is much better than twice a week. I remain very immunosuppressed, so life is restricted, but I'm so grateful that I'm still here!
Thank you for sharing your story. I’m going in for an evaluation on a few weeks to a hospital in Boston to see if I’m a candidate. It was inspiring to read your success story. I hope you continue to improve and enjoy many more years of life.
Thanks for posting your experience, very pleased that things went well for you and you are doing well. The transplant process must have been incredibly tough for you but sharing your experience also shares a message of hope and positivity. Thank you. Best wishes for bright and healthy times ahead.
Brilliant news that you're back home after what must be a traumatic experience. I have MF and my MPN specialist at Southampton is still talking about having a STC in the future but as I'm on a clinical trial (6 months into possible 2 year trial) it is not yet on the cards. But I have a BMB and abdomen US next week as well as lots of blood tests so after that there will be a better idea of my own progression.
All the very best for a full recovery, I'm sure you're over the worst.
If you do end up having a transplant at Southampton you will be in excellent hands. I have had, and am still having, the best possible treatment there.
Hi Wyebird, it is called FEDORA. Maybe a Google search will find some info on it, or if you look at my precious posts someone else kindly posted a link on one of them to the trial information.
Personally I think Bluetop is right and your enormous courage should let you change your name, like that pop singer, to 'The Cat formerly known as Scaredy_cat'.
It is very scary - there's no getting away from that. At one of the appointments leading up to my transplant, the consultant went through all the risks, including mortality. I asked him what made the difference and he explained that those who don't make it usually have a co-morbidity, such as COPD or other issue. It's not a guarantee for the rest of us, obviously, but transplant medical teams are incredibly efficient. They react immediately to any problems and do everything possible to get you through it safely. It is a horrible experience, the conditioning chemotherapy is brutal, but it comes to an end and we get to look forward to the future.
You will need to change your name. I am so happy to hear you are home now and relearning how to live since this disease has made it so difficult for you. Please keep updating us at least once per year as we all need to be reminded that there is still hope even with MF. ❤️❤️❤️
This is such promising progress. Thank you for sharing. I have a prelim appointment with the transplant team in a few weeks and am really nervous. Please keep us updated and take care.
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