Hello there @jojo888, welcome to the forum. I’m really so sorry about your recent diagnoses, and I hear your concerns about taking hydroxyurea. You are not alone with any of this and have found just the right place.
Perhaps I can offer my experiences as someone living with Polycythaemia vera ('PV') and taking hydroxyurea after finding I have the JAK2 gene mutation, just like you. I also live with a couple of other chronic ailments which have made me think twice about taking chemotherapy. Isn’t it a lot to take in?!
I see Jules has shared the great Blood Cancer UK information about Polycythaemia vera ('PV') and Essential thrombocythemia ('ET'). You likely already know that they are rare, closely related types of Myeloproliferative neoplasms ('MPN'), and from my non-medical understanding are rarer still as a double diagnosis. Here’s the BCUK information about Myeloproliferative neoplasms ('MPN') for reference: Myeloproliferative neoplasms | Blood Cancer UK
I was fortunate not to have any typical Polycythaemia vera ('PV') symptoms before diagnosis, but must admit that I experienced pretty disabling fatigue after starting hydroxyurea. Not everyone around the forum taking hydroxyurea say they experience fatigue. Cancer-related fatigue (CRF) is apparently really common though, according to my haematologist and research, but there are a few things that can help.
One was to keep active and moving in ways I could manage, and I appreciate that being bed-bound will affect this. Yoga is meant to really help boost energy for those of us living with blood cancer, and there are adaptations for doing yoga in chairs that might work for you too. Maybe check with your ME/CFS specialists what sort of movement is okay for you. I find the purposeful stretching and breathing inherent in slow yoga really helps me feel less overwhelmed, maybe for you too?
Another main thing that really helped me was finally sorting out my terrible sleep and developing a bedtime routine. Waking around the same time each day, getting daylight into my eyes early on to stabilise my circadian rhythm, and keeping to the same bedtime has incredibly sorted out my lifelong insomnia! Daylight bulbs at home can help with this too, helping us produce vitamin D like we get from sunlight.
My fatigue faded over about 3 months, and occurred again more weakly when I changed dosage a year later, but I’d say it’s mostly gone now 3 years later. I do need to watch that I don’t expend my energy too early in the day or else I’ll be exhausted by the evening. But I think, with hindsight, that it was other chronic diagnoses also affecting how quickly the chemo came to stabilise my blood cells.
You haven’t mentioned venesections AKA phlebotomy but we survivors of Myeloproliferative neoplasms ('MPN') often need to have blood removed after diagnosis as it can get rather thick/viscous, having a higher than 45 % haematocrit. Over time these venesections help bring down our platelet and other blood cell numbers into less risky and normal ranges.
I know other forum members who have kept having venesections without taking chemo, in discussion with their haematologists, but there are often anaemia complications if blood keeps being removed in the long-term. My own haematologist said he wanted to free me from phlebotomy, which he did after 2.5 years!
In my case, I no longer need venesections as the hydroxyurea has stabilised all my blood cells. I’ve been in awe at how it keeps my blood just the right sort of thin enough to flow safely with fewer clotting risks. I also enjoy having the time back from all the hospital appointments I no longer need.
So I’d say do keep list of all your queries @jojo888 and then you can ask your specialists. I often find my nurses share great practical tips so do ask when you see them too. Early after diagnosis I think it can really help to have a loved one go to appointments with us to help take notes, be a second set of ears, and to bring us home when it’s a bit much.
Don’t forget you can always call the lovely Blood Cancer UK specialist nurses on 0808 2080 888 for medical advice and other resources before you see your specialist.
If you want to find others around the forum who live with Myeloproliferative neoplasms ('MPN') or take hydroxyurea then use the search box at the top. Here’s one thread of note: Question to other PV and ET patients
Hope that helps a little and sorry for the wall of text, do let us know how you get on @jojo888.