Well, I have had my consultation with the Transplant team I seemed to have passed my MOT and apparently I have two donors lined up not a perfect match but close enough. The plan is to increase my Ruxolitinib to further improve my symptoms and to reduce my spleen for about 3 months, or the Ruxolitinib is not as effective.
They explained the risks and benefits and answered all my questions. They gave a timeline of what to expect. Things looks positive but still scary so hopefully will start my SCT sometime in the New Year.
Wayne
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Grizly
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Well, good luck and fingers crossed you'll have the SCT as planned. I'm sure you've been advised to get in as good a shape as you can in the run up, eat well etc. I kept a daily journal during the weeks I was on the ward. And read a good book. The period post transplant when in isolation was very quiet, a bit boring really. I shaved my own hair off when it started to fall out, and gave myself a Mohican for fun! I had nice room on the 6th floor and enjoyed watching the weather go by. Wishing you all the best.
This is really good news. You now have time to get as fit as you can in order to go into it as well as possible. I was advised to eat plenty and even gain some weight as you are likely to lose a lot in hospital - I did. I the meantime we are all cheering you on
Hi Wayne, , positive news and I'm pleased you've passed the medical, , I recall fearing something would hold me back and I was ready to roll with it asap.
I must admit I'm a tad surprised about the time you will wait until your actual transplant. I was glad mine was very soon after suitability tests.
I think it's more usual not to have a longish gap between MOT and SCT. But obviously everyone's circumstances differ and your care team are working to an agreed best plan for you.
Just to echo others and say it helps to try and increase weight if needed. And try to avoid infection especially during Winter months leading up to the big day.
If you have any questions going forward or need any support I'm happy to try and help so please get in touch.
I’m also starting my journey for a SCT. I have a 10/10 donor and if everything works out, I will be having it in Boston at the Dana Farber Cancer Institute.
Hi Wayne, yes it must be tense having those kinds of discussions with your care team. Look after yourself and stay in generally good health. SCT is never far from an MF patient's thoughts but it must be scary to have it closer in view. Wishing you all the best.
I really envy you for having a suitable donor. Because i have no. This will be a good start, and I hope everything goes smoothly for you. Say goodbye to your blood disease from now on.
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