Recently diagnosed with Primary Myelofibrosis

[Flyingsteamer]

Up until I caught Covid at the beginning of June 2022 I was fit, healthy and pretty active, always outdoors doing something like playing golf two or three times a week.

I never really recovered from Covid although tested negative after two weeks. Since that time, I became more and more out of breath and suffered muscle fatigue. After seeing GP and having examination and blood tests I was taken into hospital with extreme anemia. Stayed in a week but no clear reason for the anemia. Two weeks later I had more blood tests, transfusions and a bone marrow biopsy finally at the beginning of October I was diagnosed with Primary Myelofibrosis. Since then I've continued with weekly red blood cell transfusions to try and bring my hemoglobin levels up.

I was immediately asked if I wanted to join a new research study to evaluate the tolerability, safety and activity of fedratinib combined with ropeginterferon alfa-2b. I signed up immediately thinking at least I should get monitored very closely. This study is being conducted in the UK and France and I am the first to start on it (a real guinea pig)

Today I started the fedratinib tablets, 400mg once a day. After 28 days and if all is well then I will start the ropeginterferon alpha-2b injections.

I'll try and update as things move on.

[Cat1001954]

thanks for that lots of good luck

[MFBMT2011]

Good morning. I was diagnosed with Primary Myelofibrosis at age 57 in the UK. No really helpful drugs available as was 12 years ago, many have appeared since and continue to do do. Opted for a Stem Cell Transplant (SCT) 11 years ago. The various drugs help with symptoms but can not cure.

SCT is not suitable for all but worth a look. There was a brilliant pair of presentations on SCT on an MPNVoice webinar on Tuesday. It will be on the MPNVoice website or utube soon and will be worth a look.

SCT is not suitable for all and is risky, but is worth a look as the only curative option

Chris H

[Flyingsteamer in reply to MFBMT2011]

Thanks Chris, my consultant has mentioned SCT as a possible option later after the trial is completed or before if my body doesn't respond well. 2 days in and so far no discernable side effects from the Fedratinib.

[KyleeR]

All the very best 😊

[Mazcd Partner MPNVoice]

good luck Flyingsteamer, best wishes, Maz

[JP1952]

Hello Flying steamer,First of all sorry to hear about your diagnosis, must have been quite a shock for you.

Thank you for entering a clinical trial, they are so vital for research .

I have PV and also doing a clinical trial, mine is for Ruxolitnib. I agree with you that the close monitoring for the trials ensures we get excellent care.

Best wishes

[Flyingsteamer in reply to JP1952]

Wish you well for your trial and thanks for your kind comments.

[Smdg]

best wishes. Hope all goes well

[Mwalimu]

Good luck - so glad you were able to join the trial. Sallie

[Nikon7ii]

wishing you the best of health as you make your care available for research that could benefit others! Patience in your results. Keep us informed as to how you feel and what your labs say. 💪

[Flyingsteamer in reply to Nikon7ii]

Will do Nikon7ii, early days yet but I'll try and update as time goes on.

[Meatloaf9]

Good luck on the trial and best to you going forward. Please keep us all informed of your progress.

[Flyingsteamer in reply to Meatloaf9]

Will do , thanks👍

[LittleLuna]

Best of luck. I will keep watch for updates.

❤️

[Bullace]

Good luck. It sounds as if you're getting very good care.

I started on fedratinib 3 weeks ago after about 10 years on ruxolitinib. So far so good if I take the anti-sickness meds but I do feel very lacking in energy.

[Flyingsteamer]

Thanks Bullace, good to know what possible side effects I may get.

[WillyG22]

Best wishes on your Trials. TIA for keeping us updated.

[artydutch]

very good luck on the trial. I hope the results will be encouraging!

[EPguy]

Looking fwd to your updates. I'm on Ropeg (IFN) for PV Dx, but I've always thought that IFN needs something added to it to work for the most patients. In the Hepatitis days of IFN they added another drug to it for best effect.

You're getting a "something" and here's for hoping it works really well.

[Bakerloo73]

Hi Flyingsteamer, thank you so much for participating in a trial. I am never eligible and without willing participants there wouldn't be the advances that we have today. I know someone who has just been offered the trial. I think they are accepting the offer but they are nervous. I have recommended they join this site for info. they might get in touch!

[Flyingsteamer in reply to Bakerloo73]

Thanks for your support Bakerloo73. My view is that if we don't sign up for trials then we don't get the progress we all wish for.