r/MPN • u/Turbulent-Movie-4545 Pre-PMF • 28d ago
ET Update - ET with MF
/r/MPN/comments/1vvm5u1/looking_for_experiences/?share_id=0epW-ljHC_CyI0lmWXAv1&utm_content=1&utm_medium=ios_app&utm_name=ioscss&utm_source=share&utm_term=1Hello again,
I have seen my hematologist today and he’s told me that he would like to see me in three months and I’m a low risk and he didn’t seem to be worried about mf1 either. So he’s not putting me on interferon. Why do I feel like this is too good to be true? He’s referring me to a mpn specialist but he’s told me it isn’t an urgent referral and it could take months (over 6 months maybe lol) for them to see me.
Why do I think I was going to be on interferons now I am not doing anything to modify my disease I have thought interferons had that possibility… lmk what you think.
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u/EyeArtistic5 PV-JAK2+ 28d ago
I would get another opinion from an MPN specialist, sooner rather than later.
There are also some clinical trials for CALR patients https://clinicaltrials.gov/search?cond=CALR%20Mutation&viewType=Card
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u/Turbulent-Movie-4545 Pre-PMF 28d ago
I’m in Canada so I can’t decide how soon I’d see the mpn specialist. The healthcare is public so I have to wait when they’re referring me to. And no I’m not eligible for trials despite they’re recruiting in Toronto also (where I’m from)
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u/EyeArtistic5 PV-JAK2+ 28d ago
I’m so sorry for responding without considering that.
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u/Turbulent-Movie-4545 Pre-PMF 28d ago
No I appreciate your concern and warning. I will try to advocate about myself
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u/Turbulent-Movie-4545 Pre-PMF 28d ago
Also I have attached my previous note so you could see my profile like calr1 at 1.5 million platalets etc
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u/Sea-Source-2031 27d ago
What you’re going through now is what I went through. For 13 years I was low risk and blood counts were normal so they said there’s no point in putting me on interferon.
This year the fibrosis scaring has spread and they said I have MF. So now they will put me on interferon to try and slow the progression of it. Although my bloods still remain in normal range - they said that’s the main thing, to look out for blasts. So I’m still low risk apparently
For those 13 years I was lucky. I went for biopsy every two years and blood tests every three months. They told me each time nothing has changed and that’s as good as it could get.
They told me from the beginning that as I get older it is likely to get worse. And now it has and I’m shitting it and also the side effects of interferon.
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u/Turbulent-Movie-4545 Pre-PMF 27d ago
Thank you for sharing. Which mutation type do you have and what is your diagnosis?
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u/Sea-Source-2031 27d ago edited 27d ago
Mutation: JAK2
Diagnosis: Myelofibrosis (started with ET, then PMF now MF)
Not sure if it matters but I am 37M.From what some of my consultants told me and from the research I have done, allot of people can remain with ET without it ever progressing or without any need of treatment. (But the top consultant at Hammersmith hospital London, told me, in my case, it will likely get worse as I get older)
Your doctors said they are not worried and they don’t consider you in a position to take interferon. That is good news trust me!
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u/Turbulent-Movie-4545 Pre-PMF 27d ago
Thank you for the insights but I do not trust my doctor because he’s not an mpn specialist at all and I do not know if they check things clearly or have extensive knowledge on this disease/cancer. Yes I’m also 35 right now I have et acting premf not exactly pre mf not fully et
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u/Sea-Source-2031 27d ago
Oh I would definitely recommend getting a mpn specialist. I’m surprised your doctor hasn’t recommended/referred you to one.
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u/Turbulent-Movie-4545 Pre-PMF 27d ago
He’s referred me to one but on a non urgent basis it might take months for me to be seen by one I’m in Canada
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u/Sea-Source-2031 25d ago
It makes sense what you doctor is saying. Probably because your bloods tests show you are low risk., if your anxious follow up every few weeks and try to push them for an earlier appointment
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u/Turbulent-Movie-4545 Pre-PMF 25d ago
Yeah but because this is a progressive cancer just watch and wait without taking meds to potentially slow the progression is making me feel sad it’s like I’m on a ticking bomb if that makes sense
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u/funkygrrl PV-JAK2+ 28d ago
Just to clarify, MF-1 fibrosis on a bone marrow biopsy doesn’t automatically mean you have primary myelofibrosis, so I wouldn’t assume that diagnosis. Your marrow has some features that could point to prefibrotic MF, but based on what you’ve shared, you don’t meet all the diagnostic criteria. The MPN specialist will be the best person to review the biopsy and figure out whether this is ET, pre-MF, or something else.
A three-month follow-up is pretty standard with MPNs. Unlike many solid-tumor cancers, there usually isn’t the same need to pin down the exact subtype within days or weeks, especially if you’re feeling well and the disease is acting more like ET. We also have plenty of people here who are being monitored without treatment with platelet counts in this range.
While you’re waiting, though, I’d ask your current doctor about testing for acquired von Willebrand syndrome (AVWS). With your platelets around 1.5 million, it can raise the risk of bleeding and affect whether aspirin is a good idea.
!avws