Hi everyone, I’m new to the group and wanted to introduce myself.
I'm Marcus and I was diagnosed with Polycythaemia Vera when I was around 16–17 years old, back in 1989. Over those early years I had numerous treatments, including radioactive phosphorus therapy. This seemed to help manage the symptoms.
Fast forward to around 2010, and many of the symptoms slowly started returning — aching joints, legs and bones, burning sensations, thick-headedness, migraines, neuropathy, nausea, an enlarged spleen, and rising red blood counts. I’ve also developed proteinuria and kidney disease alongside everything else.
Over the last couple of years, I’ve tried really hard to improve my health. I stopped drinking alcohol completely, started cycling regularly, became much more physically active, and managed to lose around 15 kg. Unfortunately, my weight has plateaued at around 100 kg for the best part of a year, and I can’t seem to shift any more weight no matter what I try, even though my blood results continue to rise.
I’m 53 years old now, and my main goal is simply to stay as healthy and physically active as I can for as long as possible, especially for my son.
One symptom that has become much worse recently is the itching, particularly in my eyes. They’re constantly itchy and watery, and I was wondering if anyone else with PV has experienced this as well.
I’m due to have another venesection soon, and there’s also talk of another bone marrow biopsy in the next few weeks.
Its reassuring to know that I'm not alone and I look forward to connecting to other people in the group.
Best wishes
Marcus
Hi again Marcus and well done navigating to this corner of the Community.
I don't have Polycythaemia Vera but I was diagnosed way back in 1999 when I was 43 with another rare, incurable type of blood cancer (Non Hodgkin’s Lymphoma) reaching Stage 4a in late 2013 so I do know this journey rather well although not this specific condition.
Let’s look for the group members to pick up on your post.
There are a number of active group members at the moment so why not click on the main ‘Main Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Talking to people face to face can help you a lot so do check to see if any Local Macmillan Support in your area has opened up. Do also check out for a local Maggie's Centre in your area as these folks are amazing and each centre do run monthly Heamatology Support Groups….. the one I attend does have a few folks with PV in it so worth checking.
As always the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.
You may also want to check out MPN VOICE UK (Polycythaemia Vera) for some good information and have various support platforms.
Always around if you need further help or just want to talk.
