Hi, I have ET and the hospital want me to start on hydroxycarbamide, but we have heard things about it which making me decide not to go on it, ie, basically cant live a normal life like now, partner worried about going to toilet after me, if I'm cooking and accidentally say a bit of spit falls on to food he will get chemo poisioning
Hi Kazza812
I am sorry to hear about your recent diagnosis of ET. My step father has ET has been on hydroxycarbamide since 2020. Starting any treatment is scary, and I can understand you being worried. My step dad has been leading a very normal life on this drug. There have never been any concerns about us being affected by him taking this drug. Please speak to your medical team about this, they will be able to advise you on what precautions you may have to take.
ET is a very rare cancer as you know, but you can find some discussions from members in the Other cancers forum
I do understand your concerns, but your medical team would only prescribe this if it was necessary. There must be some concerns in your blood work.
I have looked at the MPN voice website about hydroxycarbamide and there is a page that I will share the link with below, that states that many people have very little side effects from this drug. The MPN voice is the official charity for people with ET so I do suggest you join there as well if you haven’t done so already.
https://www.mpnvoice.org.uk/about-mpns/treatments/hydroxycarbamide/
