Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022.
This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen.
Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation.
Initial “watch and wait” and prescribed allopurinol to counter any effects of gout.
Started Ruxolitinib in October 2023 which has been great as has stopped the itching (Pruritus), night sweats and has also shrunk the spleen which means am able to eat more to put back the weight which had been lost.
Have seen consultants @Guys & now @Addenbrookes to see if I’m a candidate for stem cell transplant. All agree and they have started to check the donor registers for possible matches.
Currently (Feb2024) just in middle of Nuclear medicine tests to see if major organs are good.🤞
Seeing the consultant again next week for all results and possible dates, but obviously they are still playing catch-up following Covid.
🤓
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Thanks for your story so far, not too dissimilar to mine and I go into hospital next Monday for Stem Cell Transplant so a bit ahead but sounds like you're on the right track. All the very best for a successful outcome.
thank you for sharing and good luck with finding a donor! You story matches mine, and I am under Addenbrooks with MF intermediate 2. I have been seeing dr Crawley who is a transplant specialist, but not been offered a transplant so far, although Guys suggested this. Only just started Rux. Who are you seeing? I am nearing 70 and I also have auto immune, so this may be an obstacle. What age range are you in?? In the states there seem to be a fair few patients who have transplants in their mid 70. In the Uk this seems not to be the case so much. Hope the process goes smoothly. I am interested to learn of the tests they do beforehand?
The tests I’ve had so far are a GFR estimation which is a study of how well the kidneys are working by analysing blood samples. They Ist inject a radioactive tracer into the bloodstream, then take 3 samples over 4 hours.
The second was a Cardiac Ventriculography Scan which is basically to assess the function of the heart pumping. They gave me another 2 injections for this one of sodium pyrophosphate. You then lie on a bed to be scanned for about 20 minutes.
My next test is a lung function test followed by an ECG.
They just need to assess all the major organs to see if you can cope with chemo etc…
None of the above is painful or even uncomfortable, but being slightly needle phobic raises my blood pressure a bit😅 ( am much better with them nowadays….)
I am back to see Dr Crawley next week for the results.
Thanks for all the details of your journey. Have they manage to find a donor yet or does this come later once all the major organs are deemed to be working well? I disregarded this option as thought I was not suitable, but since it was raised by Guys, I feel I should at least become more aware and consider before age becomes an obstacle. Are you located near Cambridge and going to attend the Cambridge conference in April? Good luck with the next tests.
Hi, will hopefully find out about donors once I’ve seen Dr Crawley next week. I’ve signed for them to start the search when I saw him in January.
I no longer have any siblings but they would consider my children if no one suitable found on register. Mine have already added themselves to the register via DKMS website🥰
(They do say that in many cases like mine, unrelated donors make better matches)
We live by the coast, so the trip does get a bit tiring, but will be on holiday, so will miss that conference.
Hi, I was very interested in your post as I was diagnosed with primary MF in 2014. Have been on Ruxolitinib since then and been well managed until recently. Sadly Rux is no longer managing my MF and a new drug is being sought. I have been asked to consider a transplant. I am 59 years old and must admit scared at thought of transplant. Could I ask you how difficult or easy it was for you to decide to go down the transplant route.
Hi, I guess until they tell you face to face what your prognosis is, you always feel like you could live forever! then it becomes very real.
In my case, I felt it was relatively easy to “take the plunge”. My prognosis is about 36 to 48 months. I still consider myself a young 68 and have a great family support network with five fantastic grandchildren.
I am scared, but the odds given for a good outcome, I’m willing to give it a shot, my best shot.
It’s a difficult question to answer but i hope that helps.
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Looking for some advice
SO MY JOURNEY BEGINS
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New to MF
