Quick recap for those that haven't followed my previous posts. Diagnosed September 2022 with primary MF, no previous signs or symptoms before catching Covid in June 2022 and health deteriorating until GP visit at end of August 2022. After some RBC transfusions, blood tests and BMP I enrolled on FEDORA clinical trial November 2022, taking 400mg Fedratinib daily and 250mcg Besremi (Ropeginterferon Alpha 2b) every 2 weeks.
August 2023 referred to transplant team for SCT as although most of my symptoms have been managed very well with drugs the fibrosis and blood cell production is still deteriorating.
Today I had my latest consultation with transplant consultant here at UHS (University Hospital Southampton). The good news is that my brother has matched 10/10 and his organ function tests have all come back positive so I have a good match ready and willing.
Provisional date for admission to UHS is 10th March 2024 so only 10 weeks or so! with a plan to set day 0 as 21st March. So in the new year I will have my own organ function tests which I am hopeful will come back positive. I know my iron level is too high and have been on iron reducing medication for the last couple of months. Increase in iron is due to fortnightly RBC transfusion of 2 or 3 units each time and that is only keeping my Hb at just above 80.
Ultrasound shows there is some fatty tissue on my liver which is due to 'western diet' and more than likely only sporadic exercise. The consultant doesn't see this as a major problem and not something I can realistically do anything about in the coming weeks. Definitely have to make amends post SCT.
A very scary time just now as I actually feel very good at the moment but I know this is the only possible curative treatment and at 60 years old I feel I should give myself the best chance of living a reasonable length of time and hopefully see my grandchildren grow up and maybe even get married.
I would be very interested to hear of other SCT experiences and in particular what you guys did post SCT to keep yourselves safe from infections as far as possible. I have been advised that I should have to isolate for 18 months to 2 years but what level of isolation have others followed? Or any other advice you can give me.
In the mean time I wish everyone a very merry Christmas (holidays for those in US) and lets all hope 2024 brings us some more hope for the future.
Love to all
Chris
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Flyingsteamer
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I had my sct end January 2023 so am coming up to my 1 year anniversary. As part of the hospital stay you will be isolated from infections and after about 6 months you'll start vaccinations including some childhood ones though the mmr will have to wait for 2 years because it is a live one. I found the time after being an inpatient till the summer a period where infection was a concern and they/you monitor temperature rises especially while your neutrophils are low. I had a few visits to hospital for various antibiotics during this period. I've not been strict on isolation- going to shops etc though did wear a face mask in public until fairly recently. I had my spleen zapped so I'll be on daily antibiotics for a long time. I also have monthly pentamidine to protect against some lung infections. I also have acyclovir to protect against shingles but expect to stop that soon as I've had the 2 shingles vaccinations.
I'm not a great traveller so I don't know what restrictions they advise for foreign travel. I also don't have young children in my life... they always seem to have bugs...so that is something you need to take advice on. In the immediate post transplant phase you have to avoid dust, soil, fungi etc- flowers, pot plants, grapes etc. You'll be given a neutropenic guide. I wasn't really told when I could restart these items but I think I started again in the summer.
Re fatty liver.. you will probably loose a lot of weight to begin with. If you want more info, read my posts from 2023 or message me
Hi Scaredy_cat, many thanks for your reply with such useful experience, very positive vibes coming from you. Have a great Christmas and new year and hope all goes well for you going forward.
I don’t have any advice to share, but I’ll be thinking of you as you begin this process. It sounds like you’re approaching it in a positive and well-thought out way. I hope it goes well for you and that it puts you on the path to many years of additional living and enjoyment! We’ll all be pulling for you.
Had mine at 58 in 2011 with a 10/10 unrelated donor. My only visitor during SCT was my wife. Afterwards I steered clear of personal contact for several weeks. I told friends and family that even if they felt fine, if they had been in contact with someone who was unwell, they should steer clear of me. Didn’t have the grandchildren at the time so was easy to avoid these beautiful walking germ bags. Used to go out and walk, and then running, in the park for exercise as pretty safe as didn’t need to get close to others.
In June, three and a half months out I went to my sister’s birthday party but just waved at her through the window and didn’t join the throng inside. Had three months with no public transport but eventually used trains, while wearing a mask, for hospital appointments and stood, keeping away from others as much as possible. Have lost some buddies with Pneumonia (but also have had some survive that). Decided to protect the investment the NHS, and my donor, had put into me.
Ironically, I did catch para-influenza after several months and had to go to clinic late, to protect others!
Had childhood inoculations after 18 months, but not Measles. Some hospitals do and some don’t as it is a live virus and potentially risky. Had it (in form of MMR) several years later ahead of a trip to the Baltic countries where Measles was rife, and not having the inoculation was higher risk.
Welcome to share my story which covers diagnosis to three months out. I also did a weekly blog for first year. Happy to chat if appropriate.
Thanks for that useful synopsis Chris, sounds pretty much as I am expecting and have told family and friends we'll just have to catch up on WhatsApp or something similar. All the best,
Hi Chris, I wish you all the very best with your forthcoming SCT. I had mine June 14th 2019. I've previously posted about my pre/post SCT experiences on this forum; I hope you can find those posts, and that find them informative. You sound positive, determined, resilient and pragmatic about what lies ahead, and I would say those qualities will stand you in good stead. Have a great Christmas. Tim
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