Pre MF /MF treatment info wanted

[lizzziep]

I was diagnosed with pre MF after a recent bmb. I’m seeing the doctor in a couple of weeks and would like to know how others are reacting to the different treatments so I can discuss treatment with the doctor, although I know everyone is different. It would be nice to be armed with some information. Thank you in advance.

[Cat1001954]

morning I was diagnosed with triple negative ET last august I’m on 500mg a day hydroxycarbamide and clopidigrel blood thinner daily

[Cat1001954 in reply to Cat1001954]

hydroxy is chemo drug

[lizzziep in reply to Cat1001954]

Thank you, I ought to have put in the post I've been treated for ET for about 13 years, but now progressing to mf.

[JeniMac in reply to lizzziep]

I have also progressed to MF after 14years of ET. I have had pegylated Interferon which didn't work to good for me (but others get good results). It is an injection you take weekly. I have now started taken Ruxolitinib. I'm feeling this suits me better. I go back to see my haemotoligist next week so hopefully this treatment is working. I also have under active thyroid so not sure if this makes a difference. Hope you get your treatment sorted 💛

[hunter5582]

This is one of the better recent presentations on treatment options for MF.

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

Wishing you all the best as you move forward.

[lizzziep in reply to hunter5582]

Thank you!

[Pte82]

lizzziep, I suggest you first discuss a bone marrow transplant with your doctor. All other "treatments" are not a cure and if your age qualifies for a transplant use the opportunity. My wife was diagnosed with ET in 1992 and treated for it until 2015 when it progressed to MF only learning when she was 70 about BMT after she changed doctors and was told she no longer qualified. Her remaining seven years of treatments including a picc line placement with weeks in the hospital at UNC- Chapel Hill finally terminating with leukemia was not quality time to say the least.

[lizzziep in reply to Pte82]

Thank you, I’m 70 in a few weeks !

[Otterfield]

I was on Ruxolitinib for a couple of years and felt really well, although my platelets were falling further and further. It didn't really matter as I was approaching my SCT. I think if I hadn't been having the SCT I would have asked for an alternative. As for SCT itself, I wouldn't imagine that it would be recommended for pre-MF, especially if you are relatively young. If you are older, that would definitely be something to discuss with your MPN specialist.

[lizzziep in reply to Otterfield]

Thank you, I’m 70 in a few weeks, not sure how, I’m sure I was only 25 last week!

[Notmyusername]

Hi Lizzie, I was also recently diagnosed with prepmf (cat 1) and I'm calr and 47. I am on Pegasys (90) and daily aspirin. so far I'm tolerating it well and platelets are coming down but still a long way to go (1200 two weeks ago). I've chatted through different treatment options with my haematologist and their view was that there is circumstantial evidence that suggests interferon could slow fibrosis, hence the benefit in addition to platelet control. His view was that sct would only be considered at a more progressed stage of the disease because of the risks, i.e. not at the prefibrotic stage.Hope that helps.

[lizzziep in reply to Notmyusername]

Thank you, my platelets have been in near normal range while I’ve been on Anagrelide for ET, although, apparently, Anagrelide can encourage fibrosis! These drugs do one job but cause other problems - maybe I’ll get one that makes me look 20 years younger! (Although I doubt that)

[CanadaG in reply to Notmyusername]

Hi there, we are approximately the same age and I was diagnosed with MF, Calr type 1. I currently don't have any symptoms and am on watch and wait. I am exploring Interferon to try to delay symptoms and progression. How is the Interferon treatment working for you? There are some interesting drugs in development for CALR although they are early stage, including a monoclonal antibody by Incyte (they developed Rux) and an peptide vaccine. Hopefully there will be some disease modifying treatments available soon.

[Notmyusername in reply to CanadaG]

Hi,

So far so good, yesterday I had my second set of bloods since treatment started a month ago. My platelets are down to 860 compared to 1400 pre treatment, so good early signs. That's after 4 doses of 90. I'm seeing the haematologist next week for a proper chat. Side effects, I get flu like symptoms, runny nose mostly and mild fatigue for a few days after each jab, but so far it's very manageable. I would say my experience has been very positive, although early days still obviously.

The prospect of new treatment is really good news especially given the long term nature of our condition. Fingers crossed!

[CanadaG in reply to Notmyusername]

yes definitely fingers crossed on the new treatments. I am considering ifn because like you, my platelets are also high. How often do you get the ifn injection? Do you do the injection yourself?

[Notmyusername in reply to CanadaG]

I have it weekly and yes I inject myself, it was a little scary at first but it's not bad at all and you get used to doing it quite quickly.

[CanadaG in reply to Notmyusername]

ok thanks for letting me know. I'm interested in giving it a try

[Scaredy_cat]

70 isn't necessarily a barrier to a sct. I had progressed to mf about 2 years ago and was recommended for one when I was 69 and after all the heart, lung etc checks had mine aged 70 and 17 days about 3 weeks ago

[DiveGoddess]

Good Morning Lizzziep, just started Besremi in January, labs in 2 weeks. Also Aspirin. I am curious what you and physician will choose. My Specialist said I may have PreMF due to BMB but said treatment would be the same. I will post update. Wishing you best of luck in your Journey. Thanks for sharing.

[lizzziep in reply to DiveGoddess]

Thank you

[monarch5000]

I agree with Notmyusername that an early pre-fibrotic MF patient should consider interferon to try and delay or avoid a future SCT if they have no health conditions that are incompatible with the drug. Why avoid SCT even though it potentially might be curative? See the 6:48 mark in this video where a highly regarded MPN specialist from California outlines the reasons she views transplants as a "woefully disappointing" treatment for many MF patients: youtu.be/9sEtrn6x3XA(Not working as expected?)

[Otterfield in reply to monarch5000]

The best source of information about the suitability of SCT for any individual is a discussion with an MPN specialist and an SCT consultant. It would horrify me if anyone was put off considering it by hearing a few sentences from a video with no connection to their individual case.

[lizzziep in reply to monarch5000]

Thank you

[lizzziep]

I’m not sure how much the doctor I’ll be seeing (new to the hospital) knows about mpn’s so I want to arm myself with as much information as possible.

[EssThro]

Hi, Lizzie. I also have Pre-PMF. This Dx came after more testing and an original Dx of ET. I was put on 45mg/week of Pegasys when I "had ET" and my MPN specialist believed that I should stay on it since Pre-PMF is very similar to ET.

I have JAK2 v617F, SRSF2, and del(20q). Do you want to share your mutations?

[lizzziep]

Thank you. I only know I’m JAK2 negative

[Mtnlife]

My diagnosis is ambiguous. "Favors ET" but there is some scarring. As yet no symptoms and I have the calr 1 mutation so I am on watch and wait. My doctor says treatment would be same if diagnosis was was fibrotic mf. Age may not be a barrier to sct. I have a neighbor who had one 2 years ago at age 78. He was the oldest person University of Virginia had treated for such. He did not have an mpn but he does have a blood cancer. This shows that treatment is highly individualized.Please keep us posted on your journey. She are all in this together. Btw, I am 71 years old.

[lizzziep]

Thank you, I will update after seeing the doctor.