I was diagnosed with Polycythaemia vera (PV) in Dec 21 and approaching the time to start treatment. I have been having aspirin & venisection but my consultant feels I should start treatment. Interferon peg has been mentioned but I’ve not had my appointment to discuss fully. Just wondering if anyone has had this treatment? Would really appreciate any thoughts on questions to ask too.
A great big welcome to our forum @Lynd.
I am so glad that you have found us and posted, you are now part of our forum family.
I hope others will be able to share your experiences and if you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
There is also a lot of information on the Blood Cancer UK website.
As for questions:
All your thoughts and fears.
Are there any other treatments to consider
How does the treatment work
How is the treatment administered
How long will it take to be administered
How long will will the treatment regime go on for
What are the side effects
Will I be able to keep working, if applicable.
say that you are worried about parking charges, cab fares, can I go home on the bus etc
Hopefully this will give you a start and you will think of other questions
The main thing is to really look after yourself and be kind to yourself and please keep posting.
Thank you Erica. I’m so glad to of found this forum. Really appreciate your thoughts and kind words
Welcome to the forum.
I have Polycythaemia vera (PV) too and was diagnosed in Aug 2020. I was initially treated by venesections before my Haemotologist thought it be best to go on interferon. I read up a lot on it and all the potential side effects, but didn’t want to be sitting duck wondering on the ifs and but and weighing up the alternatives (hydroxycarbamide) and thought in my circumstance interferon was the better option. It’s not a chemotherapy so if that is something that is making you nervous you can be rest assured. The idea of self injecting can intensify the anxiety but the needle is pretty small and injected in the thigh or by grabbing a bit of fat in the lower abdominal and injecting yourself is actually nicer as you are in full control and know when that sharp ping is gonna hit.
Initially the only side affect I had was flu like symptoms and the slow feeling of a headache coming but when you feel one coming, paracetamol often irradiates this.
Over time the side effects disappear and you can carry on with life and your daily routine as normal. After a few weeks of taking it and proper stabilised my levels and I’m doing ok. The itching is an absolute nightmare at times but I think this is due to low iron that anything and after a consistent patch of good levels I often get treated with an iron transfusion which totally alleviates the itching.
Happy to discuss any questions you may have but I’m well happy being on interferon.
Hi Rammie, I’m a Rams fan too Thank you so much for taking the time to reply, so kind of you and really helpful too. I have high iron levels so hopefully I’ll be ok with that. Great to hear you’re doing well x
Hi @Lynd, it’s so lovely to have you here- a warm welcome to the forum. How are you doing? You’ve been given some great suggestions already, so I just wanted to say that our Support Team are here for you if you’d find it helpful to talk things through over the phone. You’d be very welcome to reach out to us on 0808 2080 888. We are also on email (email@example.com).
Would you find it helpful to have some reading materials? Erica mentioned our website so I thought I’d share a couple of links, just in case they’re useful for you-
What is polycythaemia vera (PV) | Blood Cancer UK (includes information about treatment).
I’ve just been told I have blood cancer | Blood Cancer UK (I appreciate you mentioned you were diagnosed in 2021, however I think has some general information that might still be useful).
MPN Voice also have a page and leaflet about Interferon- Interferon alpha – MPN Voice.
I hope your appointment goes well. Take good care of yourself, and remember we are all here for you.
Hi Tanya, thank you for all the information. I have downloaded Polycythaemia vera (PV) info from your site. Just so good to find info from a reliable source and to know there’s someone there to talk to. I did contact MacMillan originally, and they recommend your site. I’m so glad they did. So grateful for your’s and everyones support x
Having high iron will definitely makes you an anomaly, as often having Polycythaemia vera (PV) causes people to be anaemic whereas for me I was anaemic beforehand.
Lol… that’s crazy, you local to Derby? Fingers crossed for the sheff weds game!
As mentioned happy to share experiences and trade stories on this journey were on. As rare as it is it’s always good to know you’re not alone with it.
Burton on Trent so very close. I’d not realised high iron wasn’t common. I was told not to have vitamin C with food so, for example, no fruit juice with my meals as it increases iron absorption and NO cereals as they have added iron. I guess our diets are opposite
Sad day for the Rams today, so close.
Thank you for all the support, really does help to know you’re not alone
Or it may explain your condition… increase in iron increases you haematocrit levels and if you take treatment to lower your hct levels it will lower your iron. My low iron I believe has kept my condition undetected but also controlled from getting out of control.
Burton on Trent not far at all and part of the same Hospital group. Not sure about your experience but I’m really thankful for all the support I get from the staff and my medical team at Derby Royal. Just makes me feel better about things.
Yes gutted for the team and more importantly the fans to day… hopefully the club can manage financially and go the extra step next season.
Glad your finding the forum helpful… I’m forvevr helpful to it and the people who make what it is for getting me through things especially during the early stages
I’m with Burton for my treatment and they’re fab too. It really helped hearing your experience of the treatment.
Thank you so much for all your support. Still cant believe I’m chatting with Rammie
Up the Rams!