Hey there @Amyyy, a great big welcome to the forum. Bet you wish you didn’t have to be here! But I’m glad you found it, it’s really a supportive place and you’re never alone here as dear @Erica and @Jimbo165 have already shown.
I’m so sorry to read of your diagnosis, and at such a young age. You’re right that it’s a rare illness, and Essential thrombocythemia (ET) is really uncommon at any age. I can imagine how scary it feels to be diagnosed with something like Essential thrombocythemia (ET) because I found out last year that I have Polycythaemia vera (PV), a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET). Maybe I can offer some reassurance from my non-medical but lived experience of Myeloproliferative neoplasms (MPN)?
It sounds like you’re in the ideal situation with Essential thrombocythemia (ET) by not needing any treatment like aspirin or chemotherapy—this would be my preference. Having regular blood tests and being on “watch and wait” AKA active monitoring will mean your doctors are checking regularly for any changes to your blood cells. With MPNs we can have raised levels of different blood cells, like platelets, due to us having gene mutations that increase production of blood. Usually it’s a JAK2 gene mutation. This overproduction of blood can cause blood clots, which is why we’re often prescribed a cytoreductive medicine like hydroxyurea or interferon to reduce the amount of blood our bodies make. Less blood means less risk of clotting. We also typically have regular phlebotomy to remove excess blood while our bodies get used to the cytoreductive medicine. Phlebotomy is basically like donating blood and is usually done when our blood tests show our haematocrit is above 45 % (more viscous) and thus at higher risk of clotting.
From my perspective a year on from diagnosis, it does get to feel less scary and less overwhelming. Perhaps without any obvious treatment it might feel less real, or less serious. It can be hard to explain to others what we’re living with as it can often seem ‘invisible’ even though for some it can also be disabling.
I’d say, from speaking with haematologists, attending a blood cancer conference, and reading clinical research, these Myeloproliferative neoplasms (MPN) can be lived with into normal old age no matter what age we’re diagnosed. Googling our prognoses will only bring up generalised, sometimes out of date, and often inaccurate information. Better to stick with recently researched information, so perhaps you’d like to read the Blood Cancer UK research about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK The Myeloproliferative neoplasms (MPN) information is really helpful too: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Do ask your specialists about your diet and vitamins, but so long as you eat healthily and exercise like you already do then there’s no need to change. Getting outdoors is great and might help you let some of the worries go. Nature therapy/forest-bathing or simply being out in nature is really helpful for alleviating anxiety and that sort of build-up of overwhelm, so get out there! Stretchy exercise like yoga, tai chi, and Pilates are really good for both mind and body and can help give energy when fatigue is an issue, according to recent research on living with cancers. I was vegan before diagnosis and my haematologist is happy I still eat healthily and doesn’t think I need to add anything, but do be wary of adding iron into your diet as it can increase blood production, which we definitely don’t want more of! I think there’s probably a lot of unscientific stuff out there about different foods being good/bad for cancer, but really we just need to eat healthily and not get fixated on some miracle cure as, sadly, there currently isn’t one for Myeloproliferative neoplasms (MPN).
If you’d like any information about how being in nature can help anxiety, I’d be happy to share some findings. Similarly, if you have the bandwidth for it I can share some research on Myeloproliferative neoplasms (MPN) such as ours.
But for now, try not to let the worry take over and stop you from being active. Take your time telling people, and don’t worry if it’s hard to explain to others what you’re living with—even some medical folks seem to find it hard! Make sure you have loved ones you can be open with about all this as it’s a lot. Share and share alike, I say.
Finally, I’d say something that helps me personally is keeping notes of changes in my body and mind. It can help to reflect back on how things progress, stay the same, or any sudden new side effects, and these observations can be helpful to share with our doctors to decide on our treatments.
Hope this helps @Amyyy. Sorry I went on a bit! Do please keep us posted about how you get on, and maybe look around the forum and see if others with Essential thrombocythemia (ET)/Myeloproliferative neoplasms (MPN) have shared experiences that might resonate with you. You’re not alone with Essential thrombocythemia (ET) here!
