Latest update on my FEDORA trials experience and ongoing treatment.

[Flyingsteamer]

I am being treated at University Hospital Southampton, I’ve now been on the FEDORA trial since beginning of November 2022 and am (or was) starting cycle 10 (4-week cycles). I came back from holiday yesterday and had blood tests today which didn’t go as well as hoped for as my platelet count is below the trials minimum so have to wait a week and have another blood test next week and hopefully the platelet count will have increased sufficiently to continue.

At least I will still get my RBC transfusion tomorrow to boost my Hb level, today it was 78 so well below what it should be (120 to 150)

The last clinic appointment 4 weeks ago was quite interesting, results from the recent BMB shows hypocellularity but no evidence of fibrosis. Clinically there is response with improvement in spleen but this is not reflected in improvement with anaemia, I suspect the Ropeginterferon Alpha 2a (Besremi) is at least partly to blame for the anaemia.

My first ultrasound before stating the trial measured my spleen at 19cm, now my spleen is just palpable on deep inspiration only. I will be continuing on the trial as it will help to reduce the disease bulk and interestingly the JAK2 mutation burden was going up to start with but this is coming down on the recent bloods which is reassuring.

I had been referred to a transplant consultant and my first meeting was today. I felt the meeting went well and he explained all about the process. He thinks I am a good candidate as I am relatively young and healthy (except MF) with hopefully many years left post transplant to enjoy life. Altogether a positive and informative meeting and I’m looking forward to reading the book I’ve been given and discussing in more detail the risks and what I can do to help myself through it at our next meeting.

Chris.

[Wyebird]

Wow low haemoglobin. Wishing you every success in your treatment

[MFCP]

Hi Chris I am awaiting an appointment with the Bone marrow transplant team. I found this MPN Voice webinar very useful.

m.youtube.com/watch?v=uka_e...(Not working as expected?)

[light]

Wishing you every success with your trial/treatment/transplant, What is FEDORA TRIAL?

[Flyingsteamer in reply to light]

This explains the FEDORA trial healthunlocked.com/redirect...

Hope the link works.

[Mazcd Partner MPNVoice]

youtube.com/watch?v=uka_efT...(Not working as expected?)

[Flyingsteamer in reply to Mazcd]

Thanks Mazcd I'll take a look at this one.

[Otterfield]

I had my transplant at Southampton last year and received (and continue to receive) excellent care. I wish you well on this journey - perhaps our paths will cross one day in C7!

[Flyingsteamer in reply to Otterfield]

Maybe our paths will cross, just on my way to C7 for RBC transfusion this afternoon, been going every 2 weeks for I don't know how long, but very glad of all the support I'm getting.