Pegylated interferon

Hello Alex

So sorry to hear about the headaches and night sweats they must be pretty grim.

I don’t think I can be much help as I’m quite different from you and haven’t been on Interferon. Only to say I had PV for 26 years, initially with venesections then with Hydroxycarbamide but now it has progressed to Myelofibrosis which means, as I understand it, my bones are so fibrous they are barely producing any red blood cells so I permanently have anaemia and now need blood transfusions regularly!

 I hope you can find out more helpful information about Interferon.

Hi Mumskaya,

Thank you for your reply. I’m really aorry to hear you progressed to myelofibrosis and need blood transfusions. It must be strange having anemia after having had too much red blood cells for so long!

How did you cope with the venesections? I’m finding it pretty unpleasant having them every 4 weeks with blood tests in between. Hopefully, interferon will take away the need for venesections and might slow things down. Being quite young for PV and having had another cancer, I’m keen to avoid anything more!

Thanks again for your response and I hope you can cope with the treatments. 

Hello Alex,

Thank you for your thoughtful response. Before I was diagnosed with PV I used to donate blood so for me it was just like doing that except sadly my blood couldn’t be used to help someone else. 
I have always had a positive attitude to things and to be honest I find it quite funny that for years they took blood from me now they are having to give it all back to me! My main problem now is that having had so many blood tests they find it quite difficult to get the needle in the right place because of the scar tissue on the veins, so try and encourage them to vary where they take your blood from if you can.

 I have learned to use breathing relaxation techniques as the more relaxed you are the less painful things appear to be. I hope that can work for you.

Hi Alex,

am new to this site so have only just seen your post. I have recently been on Interferon for ET & unfortunately the effects on my mental health has meant I stopped using it.  An injection once a week was really good and I was gutted to have to stop! I'm having a two-month break. I've been reading how certain people struggle with anxiety & depression no matter what Cancer individuals have. But physical side effects were minimal for me! I'm guessing everyone is different.

Hello Yvarna

Yes you’re right a treatment that works for one person doesn’t necessarily work as well for another, which is very frustrating.

 I find it helps to stay positive, I know there is no cure for Myelofibrosis at the moment but they are doing trials and even though I am probably too old for them but whilst they are trying there is always hope.

When I have an appointment with a consultant I always take a friend with me who can take notes and ask intelligent questions, I have chemo brain and can never remember what is said
I hope they manage to find something which helps and suits you..

Stay positive,

Mumskaya