Polycythemia Vera

Hi again Liz M and well done navigating across to to this corner of the Community. This group covers all the blood cancers that do not fit into the mainstream Lymphoma, Leukaemia and Myeloma groups.

As I said before 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.

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 find our Ask an Expert section helpful but do allow a few working days for a reply.

You may also want to check out MPN VOICE UK for some good information and have various support platforms.

Always around if you need further help or just want to talk.

Hello Liz M,

Into my fifth year of MF and nine months on Ruxolitinib. The one thing I have observed in reading other’s  posts is that these MPNs effect everyone differently. For myself the inhibitor drug is working assisted by a good diet, no UPF, and a little exercise.

I don’t know your age or if it’s possible for you to retire. Be good to yourself, rest when you need to and eat the right foods. Beets are good.

Naugus

Hello Liz,

I’m trying to find out about the side effects of various MPN drugs and came across your post. I’ve been offered interferon, hydroxycarbamide or ruxolitinib. 

From what I’ve read and others have suggested, ruxolitinib might have an effect on night sweats and itching which I suffer from but I also have fatigue and wouldn’t want to make that worse. 

Can I ask if your fatigue got worse after starting this treatment or do you think it’s mainly down to your PV? Also, do you mind me asking why hydroxycarbamide was so difficult to tolerate? 

I think my doctor wants to start me on interferon and then hydroxy and lastly ruxolitinib.

I appreciate how people react is very individual. 

I hope your fatigue gets better with time. 

All the best 

Alex