Hello again @Sal, thank you for reaching out at this stressful time. I really empathise with your concerns about hydroxyurea as I had similar concerns when I was prescribed it. I wonder if I can share some of my understanding of how it helps me, maybe it can relieve some of the stress before your appointment tomorrow?
Like you I was healthy and active before diagnosis, in my case Polycythaemia vera ('PV'), but I was told I needed to start hydroxyurea straight away as I was at high risk of clotting due to already surviving a severe heart attack in my 30s. The way it was described to me is that if we’ve had any clotting event then we are at higher risk of further dangerous clotting, no matter our age. Blood clots are our main risk with Myeloproliferative neoplasms ('MPN'), from what my haematologist tells me.
We can be fit and healthy as well as living with blood cancer, which seems rather counterintuitive! It sounds like you’re fortunate not to have the typical symptoms of Myeloproliferative neoplasms ('MPN'), but I also did not and Polycythaemia vera ('PV') was almost coincidentally found via blood tests. While we get on with our lives these blood disorders keep raising our blood cell numbers, crowding out oxygen from our blood, affecting how thick it is, and increasing clotting risks over time.
The way my haematologist assured me that hydroxyurea is safe for long-term use is that it already has been for many decades for people who live with sickle cell disease and use it long-term. Research shows these sickle cell survivors have not developed higher incidences of different cancers, despite these being noted in the potential side effects of hydroxyurea.
My haematologist also describes hydroxyurea as a ‘mild’ type of chemotherapy and that all of the potential side effects listed in its warnings are very, very rare but have to be noted. I’m told it’s very well tolerated by most people, and for those that it doesn’t work there are many other treatment options to change to, like interferon or ruxolitinib.
And may I say with utmost respect, at 72 you have achieved an impressively long life already! Imagine if treatments can help keep you fit and healthy for many years more with just some simple adaptations? For comparison, I’ve got a decade or so before I’m of retirement age and I want to try any option currently available to me so I can live more fully now. I feel really fortunate that I have a type of blood cancer for which established treatments are available and affordable—there are many forum members who aren’t so fortunate.
I think back to my grandpa passing away due to his cancer treatments being so toxic to his weakened body, but this was the 80s and medicine has progressed a lot. Far beyond my understanding!
At the end of the day it is of course totally our own choice whether to follow treatments we’ve been offered. I am certainly not an expert in blood cancer like my doctor and so I’d rather trust his training than my basic understanding of the different types of modern chemotherapy.
Personally speaking, I still question my use of hydroxyurea, I hate that it does affect my skin and energy levels, but I might not be here to moan about that were it not for hydroxyurea being available as my treatment.
Tricky decision to make @Sal so I think you’re wise to question it and think around its potential issues and benefits.