Myelofibrosis

[lucieboo]

Hello

I have had a blood transfusion a few weeks ago. I have been on Jakavi for 3 years and my RBC count dropped, I have circulating blasts, but only 2% or so at present, and I got very weak and breathless with the anaemia. I feel much better since the transfusion, but am wondering how long this is likely to last. I know RBCs can last about 120 days, but with myelofibrosis? Mine is post-PCR, which I have had since 2010.

Lucieboo.

[Inca]

Hi there,a while since we connected.Igo in on Friday for my transfusion as results this week are low.My last transfusion was August….I am M F like you on Jakafi mostly feel ok ,not always but still alive & kicking. Best of Luck for your transfusion hopefully will last some time.Keep positive,we are the same age I remember,so keep going.Sally🥰

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[lucieboo in reply to Inca]

Hello Inca

That is good, if there are a couple of months between transfusions it is OK. Yes, a bit up and down re. energy levels, but definitely better after the transfusion. I even managed to mow the grass, but it is a one-off as we have a gardener now and a home help. Enjoy every day! All the very best, Lucieboo 🐶

[Bainbridge]

Hi my husband has MF and is 75 years old. His disease progressed in 2023 and has been on Jakifi since then. He was on HU when he was first diagnosed back in 2020. He has had to have blood transfusions every 5-6 weeks since June 2023 which makes him feel much better afterwards and not as anemic. His MNP doctor checks his iron since they state that too many transfusions can increase iron but so far it’s ok . His blasts are about 1-2% and some days he is very anemic but he is doing fine and just does not push himself. So we just take each day as it comes and enjoy. Good wishes to you on your transfusion they do help and we are so grateful for those who donate blood for MNP patients.

[lucieboo in reply to Bainbridge]

Thanks for your reply. Much the same, potter around and go for a walk with husband and dog, but a short one and I am slow! Managed to get some help with housework and we have a nice gardener, it all helps, neither of us has much energy. Definitely better after the transfusion and it seems to be lasting. Yes, thanks blood donors, did it myself for years. Keep smiling!

Lucieboo.

[lizzziep]

My anaemia improved after going on Momelotinib, my platelets however went up, so now taking hydroxy as well and they’re going down. I also have EPO injections twice a week. My haemoglobin is now over 100 for the first time in years. I am 71 with MF.

[lucieboo in reply to lizzziep]

Thanks for your reply. Good luck!

[Scaredy_cat]

Has your doctor considered momentalib or fedratinib?