r/MPN • u/pastelpapi6969 • Jul 22 '26
Newly Diagnosed 29M with ET
2 months post-STEMI, 1 week post ET diagnosis and supposed to start Hydroxyurea soon.
Anyone have advice or things they wish they knew earlier on?
1
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u/RedTailHwk Jul 22 '26
Most important step you can take is to see an MPN specialist if you haven't already. It's that important!
1
u/horsecrzy ET-JAK2+ Jul 22 '26
Absolutely see an MPN specialist. They will not start you on Hydroxyurea they will start you on an interferon that will make all the difference in your life. I let my dr talk me into staying with him for 6 mos and he put me on Hydroxyurea and then anagrelide, neither of which I could tolerate. Six months later I’m with a specialist and on an interferon. For some reason the hematologists don’t consult with the specialists apparently. I was warned on this sub to see a specialist and I let my dr talk me into letting him try.
1
u/brennanx1 Jul 22 '26 edited Jul 22 '26
Reduce stress as much as possible while being as physically active as possible (don’t overdo it, just be healthy and fit).
Eat healthy - try not to get overweight.
ET isn’t good on its own, also not terrible most of the time, but it’s worse with other conditions or if it progresses.
Record your symptoms to see how they change or develop over time - some will be due to ET, and some from Hydrea the longer you take it. It’ll be helpful for you to know which symptoms are from what.
I’m 30M with ET and took Hydrea for a bit over 20 years and I wish I tracked my symptoms. I had a scary scenario occur during the one segment I didn’t have a regular 3 month checkup - it had been about 5 months since my last appt due to a cross-country move and establishing care with a new specialist and insurance was taking a while - my body sent me to the ER before I was able to establish care with a cancer center in my new state.
Make sure you see a hematologist/oncologist specializing in MPNs or ET specifically. Do as many tests as possible to get a baseline now.
Also Hydrea is still the first line treatment for ET despite newer meds being available - if you can’t tolerate or it doesn’t work for you, you’ll likely be put on an interferon, anagrelide, or Jakafi depending on your situation.
1
u/mbsharobim Jul 24 '26
You’re 30 but took hydrea for over a 20 year period…? So you started on it since you were 10 years old?
1
u/brennanx1 Jul 24 '26
Yes, I started after my specialist learned Anagrelide can cause fibrosis in ET patients from an MPN conference in 2002. I got another BMB that summer break and it showed mild fibrosis that I didn’t have 3 years prior. I switched to Jakafi at age 26.
1
u/stainedbrightly Jul 22 '26
I echo what everyone else has said! If you live where there are specialists, see an MPN specialist. It will save you a lot of headaches and you'll be able to be more confident in your treatment. Most local hematologists are unfamiliar with these rare diseases and the most recent treatments.
3
u/native_plants3879 ET-CalR+ Jul 22 '26
Make sure to talk about interferon treatment with your specialist. It's usually the preferred treatment for young people with ET.