Still on a weekly visit to Addenbrookes and now have my Hickman line removed.
Most blood results are good but a recent chimerism blood test has shown peripheral blood is @ 98% donor (which is very good) but T-cells are only @7% donor, therefore my consultant has advised reducing the immunosuppression drugs from day +60 instead of day 90-100 to give them a chance to fight my host T-cells.
The immunosuppressives I’m on are tacrolimus and mycophenolate mofetil .
Recently have been woken with itching but as there is no associated rashes, they don’t believe this represents Graft versus Host disease (GvHD). I take Piriton which is a mildly sedating antihistamine which I’ve found to be very helpful.
Appetite and taste seem to be back to normal so strength is slowly returning. Still get a bit tired in the afternoon but definitely improving.
Can’t wait to get the Harley back on the road, but will wait for the warmer weather next year. Yes, after years of riding in all weathers, I can afford to be a fair weather rider!!
Thank you all who have sent messages of support, it has been most welcome.
Happy to answer any questions anyone may have.
Keep strong and carry on!
G
🤓
Written by
LFCLove
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very good news LFCLove. Congratulations for continued great progress on your SCT journey. How nice to have a Harley waiting when you are ready to ride again. I like that kind of motivation.
that’s brilliant news. I experienced itching too and also found piriton helpful. I think it’s the anti-rejection drugs that caused it in my case. Stay strong x
I believe you could be right as itching is an auto response to Immune suppression and I will be stopping mine in a few weeks so will be interesting to see!
Thank you for sharing this report, and congratulations on what sounds like a successful process so far. May I ask, what were the conditions (blood counts at a certain level, fibrosis, etc.) the prompted your doctor's to encourage you to pursue a SCT? How did you know it was time to go this route? Thanks for any reply.
Initial prognosis prior to biopsy was 5-15 years (2022) MIPSS70 score was intermediate risk, but following the biopsy and after 1st and 2nd consultations, was changed to 18-24months! I believe the prognosis was gained from several factors and blood results being one as no one result stood out.
Once given the new prognosis, I felt I had only one option even given that there were no guarantees that it would be successful and the Myelofibrosis could return!
It is a hard decision for anyone and one that deserves a lot of thought.
I am sorry only to reply now and have missed earlier reports as not checked this site during the holidays much. It is good to hear you are doing so well and have had a ‘good’ experience during sct at Addenbrooks.
I have a very similar diagnoses and on Ruxolinitib as well and also being treated at Addenbrooks, now after a spell at Guys. my first doctor at Addenbrooks was a stem cell expert, but I am not a candidate for this …yet. Now I am under the MPN team. May I ask which doctors have treated you?
Have seen Dr Crawley mostly, who is one of the best, but also Dr Richardson, Dr. Basheer and Dr. King. To be fair, they all are very nice and plain speaking.
Thank you! I have been under dr Crawley to start with, but as not a candidate for stemcell at the moment, I am now under the MPN team and see Dr Godfrey.
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Update
SCT go ahead
