Question for those living with MF

[Otterfield]

I was diagnosed in August and have been on Ruxolitinib for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87. Platelets last week were 117, but today this had dropped to 94. Are these fluctuations a normal part of the disease? To be honest I am having a bit of an emotional wobble because everything is still so unfamiliar. My energy levels have been improving a lot so I'm a bit thrown by my counts going down again. Thanks all, Jennie

[Cja1956]

I understand your confusion, Jennie. My hemoglobin was at 8.9 last September 2019 when I had my bone marrow biopsy. I was taking Ruxolitinib which I’d been prescribed by my previous hematologist. My new MPN specialist at the time, took me off of the Ruxolitinib. My hemoglobin has been pretty stable since January and is now normal as of my last visit. When I asked my doctor why my hemoglobin and red blood cell count was so low before, she suggested that it might have been from the Ruxolitinib. She switched me to Fedratinib last year and it’s been a life-saver. . I just wanted to give you my experience. And even though I was diagnosed with post ET MF, my platelets are always high. But they have also stabilized.

I hope things improve for you soon.

Regards,

Cindy

[Otterfield in reply to Cja1956]

Thank you Cindy. Everything feels very unsettled at the moment.

[hollymae in reply to Cja1956]

Hi Cindy are you in the USA I didn’t think we used Fedratinib in the UK Hollymae

[Cja1956 in reply to hollymae]

Yes, I’m in the US. Fedratinib was approved for MF in August of 2019, and my doctor started me 2 months later. I felt like a guinea pig at first and at one point she had me on 4 pills per day. But it made me so sleepy that she reduced it. Now I only take 2 every other day. But I also take 2 hydrea/ day and one baby aspirin. I hope it gets approved in the UK soon.

[Jean24 in reply to Cja1956]

They are going to be starting this trial soon in Birmingham UK. This trial was put on hold when covid 19 started. Xx

[Jean24]

My husband been on ruxolitinib for almost 31/2 years. He's needed blood transfusion since he was diagnosed.

He's just had his results from his second BMB, I asked for this because I was becoming more and more worried that his PMF had progressed further. His result stated only change was his PMF had become worse. Waiting for a CTScan next week to see if spleen is further enlarged. If it is my husband will go forward to a trial, if his spleen is the same size 17cms there are 3 more options open for him to try. He's got a MRI on his brain tomorrow. So when you go to hospital make sure you ask lots of questions on options open to you. Good luck xx

[Cja1956 in reply to Jean24]

Sorry to hear his MF has gotten worse. I also had a brain MRI about 2 weeks ago and, thank goodness, everything was normal. It sounds like your husband is in good hands. I wish him the best.

[billybrock]

Hi Jennie

I have PMF and have been on Ruxolitinib for over 12 months. I have no side effects and it is controlling all other MF symptoms. I do not have fatigue, night sweats, etc, and I feel well within myself.

I do have an enlarged Spleen at 21 cms , and this has not reduced in size for 6 months. I have a consultation on 19th October to discuss my Spleen treatment. My blood levels are good and I do not have any transfusions. Hope this helps. Although, Everyone is different.