Molecular remission of MF which is being treated with PEG

[LucyAshtonGeering]

Hello fam,

Last week I was told by an MPN specialist that my blood counts indicate that I might have achieved molecular remission. This is yet to be confirmed with the relevant tests, meanwhile I am feeling happy hoping this might be true.

If this is the case, I’m wondering what that would mean for my illness and symptoms?

I have familial post-ET MF graded as Intermediate 1, JAK2+, and am currently on 45ug of Peg once a fortnight, so the equivalent of 27.5ug Peg weekly. I started Peg nearly 4 years ago at 90ug weekly; this dose was reduced to its current level nearly 3 years ago since which my counts have pretty much been stable and the only issue which came up was anaemia, which was treated with Epo. I stopped the Epo 7 months ago and my counts have remained fine since then.

I’m currently 43yo. I started presenting with ET symptoms 10 years ago when I was 33, and was eventually dx with PET when I was 37.

[hunter5582]

Congratulations. That is wonderful news.

The ultimate benefit of a molecular remission is not completely understood. It will take time and long-term follow-up with people who achieve molecular remission to understand. I discussed this with my MPN Specialist as I have seen a reduction from 38% to 10%. Her take is that a reduction in allele burden is a good thing but we can't say how good yet.

I am very glad to hear that you will be part of a very fortunate data base.

[LucyAshtonGeering in reply to hunter5582]

Thank you Hunter, fingers crossed this is the case. I’ll try to find out more from my consultants, I guess there’s not enough data yet to fully understand what this might mean for MPN patients.

[Spanelmad]

Fingerscrossed!!!

[monarch5000]

Are you saying your current diagnosis is JAK2+ post-ET MF?

I do know of one post-ET MF patient who has found that weekly Pegasys injections has enabled her to live 8 years and counting with stable counts, including a stable hemoglobin count of 10-11.

[LucyAshtonGeering in reply to monarch5000]

Hello and thanks for your response. Yes that is my current diagnosis. I failed to add that I’m 43yo and started presenting with MPN symptoms 10 years ago when I was 33. So I’m hopeful that I’ll be able to continue with Peg and lead a relatively functional life for a few more years yet, and I hope your friend does too!

[mhos61]

That sounds promising, especially as you quote your haematologist is an ‘MPN Specialist’. Keeping my fingers crossed for you.

[LucyAshtonGeering in reply to mhos61]

Thank you so much, it was Prof. Adam Mead of the Oxford hospital group. I’m part of one of the MPN research trials he runs, which puts me under shared care with his team and my local hospital in East England. It’s a really helpful, constructive relationship; one of my local consultants describes it as “we’re looking after you, they’re looking after your DNA”.

[mhos61 in reply to LucyAshtonGeering]

Prof. Adam Mead, wow…Enough said!

[LucyAshtonGeering in reply to mhos61]

I know! Usually one of his team phones me; when I picked up and heard it was him I got a bit flustered! 🤪

[mhos61 in reply to LucyAshtonGeering]

😂😂

[socrates_8]

Great news Lucy...

Steve

[Mishie14]

Congratulations! Very happy for your good news. Thank you for sharing it. It’s a confidence booster in the drugs we take. Stay safe.

[TimothyHLuff]

Sounds great! As Hunter said, currently it is not entirely certain what benefit would deep molecular responses bring. However, some MPN specialists believe that elimination or reduction of JAK 2 VAF represents a potential of curing the disease. Further studies are required to prove this point.

[LucyAshtonGeering in reply to TimothyHLuff]

That would be amazing if so 🤞🏼🤞🏼🤞🏼!

[light]

Yay, great news and lots of hope for the rest of us. Wishing you well.

[Meatloaf9]

That is great news, we are all praying for you and all the others with these diseases. Have you had your Jak2 AB checked and what was it before you started Peg and what is it now. I only ask because I am considering a change from HU to an interferon. Best to you always.

[LucyAshtonGeering in reply to Meatloaf9]

Thank you so much, I think this is something I need to find out when I have my local haemo checkup next Monday, I’ll keep you posted.

In my experience Peg makes me much more functional than I had been for years, including when I was on Watch and Wait. It’s enabled me to work again, which I’d had to stop in late 2018. For me Peg’s side effects were anaemia, which now seems to have stopped following 2 years of treatment with Epo, and the higher dose of Peg made me incredibly dry everywhere - all my skin, mouth, eyes, nose - so we titrated the dose to its current level and the dryness has gone.

I would say it’s worth a try.

[marlenablue]

That is amazing news, congratulations! Please keep us posted.

[Bikecrazy]

So good to hear your treatment has worked for you.. Congratulations.

[Nikon7ii]

Wonderful news to share - congrats! It’s such positive news to share with others that are using PEG but not as long as you. 💪😊

[EPguy]

Great results. It likely means there was no Jak2 allele "detected". By confirming they probably mean a more sensitive test. This old post shows how the tests can differ:

healthunlocked.com/mpnvoice...

My recent result listed a limit of 1%, so if mine were near there a different test would be needed.

Do you have any BMB results? Drs can track progress to check for any physical changes, including improvements, in marrow. Of course BMB can be a pain.

[LucyAshtonGeering in reply to EPguy]

Hello, and thank you, fingers crossed…

Does that mean your allele is now so low as to be all but undetectable? I’m not very strong on molecular science!

I’ve only had 1 BMB, in May 2020 to confirm I’d shifted to MF. It would be interesting to see what changes might be there, I’ll see if I can persuade my Haem team to do another one.

[EPguy in reply to LucyAshtonGeering]

I'm at 5%. This post shows my progress. No need for me to think about it yet.

healthunlocked.com/mpnvoice...

With the continued decrease it's possible I could get to such a low Jak2 VAF.

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This old post discusses some implications of marrow improvements, progression, and other responses but for ET,PV. The 1st study showed a decent chance of marrow remission

"PEG-IFN-α-2a was capable to completely reverse BM fibrosis in up to 22% of patients, which is higher than previously observed by other investigators"

healthunlocked.com/mpnvoice...

But CMR (complete molec response, what you achieved) does not assure MR (marrow response)

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Bottom line with your happenings, getting a BMB result seems well worth knowing, with a decent chance of some improvement.

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You asked about symptoms, you would be the best judge, do you feel better than before IFN treatment started?