I’d been putting off having a bone marrow biopsy since last November, finally had it, the stress was worse than the actual thing and the gas and air was wonderful! However I’m now told I have MF, Hb currently 96, white cell count 4.9, platelets 683, haematocrit 0.290, neutrophils 2.85, not much of that means anything to me.
My only symptom is fatigue due to the anaemia, which seems to be improving, not had any Pegasys injections for four weeks. Spleen normal.
Other than that I’ve never had any symptoms, so I’m well puzzled. My haematologist who I think is an MPN specialist, tells me I have a cytokine storm going on.
He’s recommended going onto ruxolitinib, I’m a bit bothered as have read Rux also supposed to cause anaemia.
He has suggested the Limber 313 trial, where Rux is taken with Parsaclisib.
Is anyone on this trial with these drugs? or Limber 304 which is similar.
Sorry for the long post, looking at the prognosis for MF is giving me the heebie-jeebies, I’m 66 and many things still to do. I’m seeing the consultant again in 10 days.
Thanks for reading. This forum is my lifeline. Jo
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Joetcalr
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Hello. Is this your first BMB? I mean is there a chance always had PMF and not ET? As far as the trial you mentioned, i have read that it has veey promising results. I think you should enter
Hi, thanks for your encouraging reply about the trial. Yes that had crossed my mind about always having had PMF, though I’ve supposedly had ET for over six years, and very high platelets 1600+ at the beginning, no anaemia then. I will ask the consultant when I see him in 10 days and have my next blood test. And yes that was my first BMB
Cause the is also pre-PMF that mimics ET and i believe the only way to clarify this is through BMB. Also what is your doctors feeling about this trial? What he expects??
It seems good for spleen and reduction <<They also had very rapid and durable improvement in their QOL, patient outcomes, and symptom scores, on top of an already optimized therapy>>
But it does not seem to address anemia <<(adding Parsaclisib) has been neutral to anemia>>.
You're right about anemia, it is a top reason Rux gets discontinued after time. If anemia is a concern you might inquire about the Momelotinib trial:
<<an emerging treatment for myelofibrosis patients with anemia>>.
Cytokine storm is a term we know from Covid, esp the early covid had this in a bad way. (I know directly) It's about extreme inflammation. But usually MPN is less a full storm and more a long fog. Is your Dr suggesting you have an unusual level of this activity for MPN? Rux does reduce inflammation and this may be why Dr is suggesting it.
That was quite a read! Thank You EP guy, very interesting. Has anyone experience of momelotinib? Sounds like the best one of all, what do you think? I will try and ask the consultant about it. Jo
It's likely best for those with anemia, so it's worth your inquiring.
My impression is none of the latest Jak-i's work fundamentally better than Rux, but they address complications that occur on Rux. But time may show other advantages. I think there are many more in early development.
I've not seen a member post on the trial. Hope we can hear from one. You're right it is promising. Right now at least in the US, the newest FDA approved Jak-i is Vonjo, but it's for low PLT MF, rather than anemic MF. It seems there is broader need for addressing anemia.
<<VONJO is indicated for the treatment of adults with intermediate or high-risk primary or secondary (post-polycythemia vera or post-essential thrombocythemia) myelofibrosis with a platelet count below 50 × 109/L>>
I’m still waiting for my bmb results from 6 weeks ago. I had one when first diagnosed with ET over 10 years ago. I’ve been very anaemic for a long time so they suspect progression to something else, obviously very worried what that is! I’ve got a telephone consultation on 7th September. I’ve got my fingers crossed that no news is good news but realistically I suppose progression is most likely. I am 69 years old. So I am very interested in what you are prescribed and how it works. Please post what happens. Hope all goes well for you.
I progressed to MF about 18 months ago but I have the Jak mutation. I've been on ruxolitinib for about a year. My red blood figures went down but I was prescribed iron tablets and am now ok. However there has been a balancing act between platelets dropping when ruxolitinib is increased and my spleen is not shrinking. My haemo raised the Limber 304 study last week where I will possibly ( if not on placebo) go on a new drug + ruxolitinib. I probably will go on this
A daunting time for you. When my haemoglobin was 93 fatigue was horrid. You must be understandably beside yourself. I think given the chance I would personally jump for the trial. Not many people are going to be offered it. You could abandon it at any time but might never be offered it again.
Thank you Wyebird, at the last count two weeks ago my Hb had come up to 96, and yesterday I did an 8 mile walk! I tell myself it’s just like going up Kilamanjaro without the altitude sickness! And I will definitely go on the trial, partly because of, I assume, much better monitoring. Hugs to you too, Jo x
I was taking Ruxo for 3 years, from 2016-2019. After about a year, my hemoglobin started dropping. I started feeling worse and worse and in 2019, I found a mpn specialist. I had a BMB and my hemoglobin was 8.7. She also found I had progressed to post Et Mf. She took me off Ruxo and put me back on hydroxyurea. I also had to get EPO injections every week or so which I did for 4 months. She liked my hemoglobin to be at 10.2 or above.
That’s very interesting Cja. I am a little scared of going onto ruxolitinib because of it causing anaemia. Did you have any problems with the EPO? I’ve read that blood transfusions are not a great idea, but EPO is different, more specialised? Thanks Jo
Hi Joetcalr. I was diagnosed with PMF whilst living in Spain. Hg was 96 and started EPO injections immediately, one a week. Once Hg reached 100 I was started on hydroxocarbonide but continued with injections on a reduced dosage till Hg was 110. They worked well for me and I would prefer this to a transfusion Here in Scotland I have had to ask specifically for this option if I should need it Hope this helps Best wishes
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Now 51 and lived with an ET diagnosis since the age of 28. Recently had bone marrow extraction to confirm if I have MF! Find out on 15th Oct
