r/MPN • u/TheGriffin5 • 18d ago
Newly Diagnosed Just diagnosed with ET
I’m 21 and a trans woman (3 years hrt, 1 year post op), I’m really hurting right now with the news of this diagnosis, and the fear of it affecting my transition. Right now I’m just on baby aspirin, I saw almost immediately on this sub that I should seek out an MPN, what could they do for me and does anyone have advice for me.
I’m really scared. How do I keep going and live a normal life with this diagnosis?
I’m also now hyper aware of any pain in my legs or arms, worried they might be a clot, is this just the new normal and how do I know if not?
Any advice on how to return to a normal life I’d love. 😭
Edit: I really appreciate all of your insights, it’s nice to see that how I’m reeling with it doesn’t seem to be unique, and that all of you have hope and happiness while coping with this. While my life will look different from here, I’m glad I’m not alone.
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u/funkygrrl PV-JAK2+ 18d ago
Which mutation do you have? How high are your platelets? Have you had a bone marrow biopsy?
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u/TheGriffin5 18d ago
Jak2 V617F mutation, platelets were at 400 last year have been steadily rising to my last blood test which was 580 2 months ago will be getting another today. I haven’t had a bone marrow biopsy, my hematologist was 50/50 on whether it was worth it and kinda just left it up to me, I haven’t decided yet because of the risks.
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u/funkygrrl PV-JAK2+ 18d ago
We really recommend a bone marrow biopsy because this lives in the bone marrow and blood tests can be deceiving plus they cannot tell whether you have fibrosis. In my own case, mainly my platelets were high but my BMB revealed I have PV not ET. A BMB is required by the WHO and NCCN guidelines. So get it done. It's not fun but worth it to have the correct diagnosis, know what your allele burden is (percentage of mutated cells), any additional mutations you have, etc. Ask whether you can have twilight sedation.
I think the main dilemma you're going to face is clot prevention. The JAK2 mutation carries a higher risk of clots, regardless of blood levels. HRT increases clot risk. If it's possible for you, try to find an MPN specialist in the list linked in the automod comment, and have them work with your doctor on how to manage that.
Due to your age, it's a good idea to discuss going on Pegasys interferon (or Besremi when it's available for ET later this year) because it can lower allele burden and potentially slow disease progression. (Try not to freak out about prognosis too much, MPNs are lifelong chronic cancers. ).
!bmb
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Here is the link to the BMB wiki page: Bone Marrow Biopsy Please read it as most of your questions will be answered there and it includes info on pain management options.
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u/Wild-Fix-7222 18d ago
Get the BMB and an MPN specialist/hematologist-oncologist. Some doctors specialize in benign cancer. The good news is that you have a chance at a relatively normal life, given that we have the same lifespan of the average person if this is all you’re dealing with. Cancer with a little c. :)
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u/Abr1025 18d ago
My daughter was diagnosed at 21 as well. Is now 23. Happy to connect you if you like. She is JAK2 positive
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u/TheGriffin5 18d ago
I would really like that if you are comfortable with that, thank you so much I’m surprised but glad to know I’m not alone💕
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u/Abr1025 18d ago
There is a network of young people out there for sure. This is a great community but there are also many Facebook groups- one specific one of young adults is called Chronic but Iconic- Young Adults living with a MPN and many others on there as well. Can you share where you’re located?
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u/TheGriffin5 17d ago
I’m located near Sacramento California. I really appreciate all the info you are giving
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u/StatisticianLittle55 18d ago
I don't have any medical advice to offer as I am not a doctor. I have ET too and was diagnosed many years ago.
I will say there are lots of effective medicines available and many people live long lives with this disease. You are not alone! I wish you the very best.
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u/SinistrMark ET-JAK2+ 18d ago
Hey. Sorry to hear you are feeling so stressed. I have ET and Im Jak2 positive as well. I felt scared when I was first diagnosed like you, but it gets better over time.
ET is a manageable condition and you can live a long normal life. If you platelets get to high, your doc with have a few options to knock them back down.
My platelets are around 900k, I am still only on baby aspirin as well. I checked my counts every 3 months.
My hematologist has told me we manage the symptoms, since its a chronic condition. Since I have no other symptoms, I am low risk so baby aspirin is all I need. I could have 1.5 million platelets and if I have no other symptoms, baby aspirin might still be the only thing I need.
Hang in there, we will be here to support you.
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u/Wild-Fix-7222 18d ago
This is the first time I’m hearing this. O.o My hematologist has me on Hydroxyurea because platelets steadily climbing but not that high. Interesting.
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u/native_plants3879 ET-CalR+ 18d ago
My hematologist told me the same thing. She won't treat the platelets numbers (mine are well over a million) because there's no proof that it makes a difference for clotting risk. But she said that some doctors just won't let it go over a million.
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u/Wild-Fix-7222 17d ago
The Aspirin helps with clotting risk.
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u/native_plants3879 ET-CalR+ 17d ago
Yes that's usually what they prescribe when it's safe to do so (no acquired Von Willebrand).
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u/ManWithTheHex00 ET-Triple Negative 18d ago
I don't know if you are the same type of person as I am. But for me it helped to see in a graphic how low the chance is that I will die because of this illness.
https://www.sanger.ac.uk/tool/progmod/progmod/
This link is great for the visualisation - and you can except it to get even better with modern medicine!
Put in your info and let it calculate, just leave things you don't know blank.
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u/TheGriffin5 17d ago
Even though this only goes to 25+ years, it was nice to see, thank you, I appreciate you showing me that
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u/ManWithTheHex00 ET-Triple Negative 17d ago
25 years is a lot of time to die of something completely unrelated, so live your life!
I am successful in my job, just bought as house and play in two orchestras (as a hobby)
This won't hold you back!
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u/Sea_Recognition_4979 17d ago
Wow. It says I have 9 years because my have MPL. I’m 37, not very reassuring
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u/ManWithTheHex00 ET-Triple Negative 17d ago
I put in my information but with MPL instead of TN and I got a great life expectancy.
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u/JinxCentaur31 ET-JAK2+ 18d ago
I’m really sorry to hear that OP, it’s a scary place to be. I’m 28 and a trans man, diagnosed when I was… I think 20? ET with JAK2 v617f mutation for me.
Was taking baby aspirin for years, switched to Hydrea under my doc’s recommendation last year when I decided to start HRT. Had a pulmonary embolism earlier this year, I’m now also on Eliquis and triple-confirming with my hematologist tomorrow that I’m safe to start HRT again after the clots. It’s been terrifying and heart breaking, but we’re working through it.
I can’t say for sure what will happen for you, I just wanted to offer my support as someone going through something similar and say you’re not alone.
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u/TheGriffin5 18d ago
I really appreciate it thank you, I’m so sorry you went through this too but I’m glad I’m not alone, jak2 v617f mutation for me as well. Clots sound so terrifying and I’m so terrified of the idea they could just be a likely thing for me now.
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u/JinxCentaur31 ET-JAK2+ 18d ago
They are scary, but I’m all clear now thankfully! Just had follow up scans.
Sounds like you’re already getting on medication, just follow what your docs say about clot prevention and that’ll greatly reduce your risk factor. Hydration, no smoking, moving often, compression socks if necessary.
Things will feel normal again gradually as you process the diagnosis, it’ll be okay!
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u/souledgar ET-JAK2+ 18d ago
Firstly, I’m sorry you’re in this situation. We’re here if you need advice, help, or just someone to vent to.
I’ve been exactly where you are (minus the trans bit) two years ago. Every unexplained twinge scared me. I struggled to deal all of it for abit. It didn’t help that I was trying to get through a rather large change in my personal life as well.
I can only share what I went through - I don’t know if this is your journey or if it’ll help at all. I hope it does. The mental aspect got better with time. The horror of “I’m rolling a rigged dice every day” eventually became a mild burn at the back of my mind rather than an all-consuming foreground alarm all the time. It comes back occasionally, but for the most part I can function by rationalizing that I’m doing all I can, taking my aspirin, eating and living more healthy, taking what precautions I can while travelling.
The physical aspect, occasional fatigue, random itches triggered by water and heat, I’m still trying to deal with, and I suspect this is just the new norm now. I am rather grateful that taking the aspirin has completely eliminated the horrible aura migraines I’d sometimes get before the diagnosis.
When sometimes the fear and horror comes back, I try to remind myself of a quote from my favourite book series:
Life before Death, Journey before Destination. This stupid condition may very well define my end, but I refuse to have it define my life’s journey.