Polycythemia Vera

Hi again JEM1 and welcome to this corner of the Community.

I am Mike and help out around our blood cancer groups. 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 Hematology Support Groups most are online at the moment….. 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.

good morning,

I have just come across you on the forum as I have not logged on for quite some time. Have your symptoms improved at all.  I too have PV and suffer all the problems you listed above.  I was diagnosed 4 years ago and struggle so much with the fatigue and breathlessness. Unfortunately I still have to work full time to cover my mortgage and bills but it really is getting harder to do. I would love to hear from you as it is hard for others to understand. 

Hi May2020,

It is good to hear from someone that is going through the same struggles as myself as I do not know of anyone nor ever heard of Polycythemia Vera until last November. How are you coping with these symptoms, have they got any worse over time.

In December last year I was put onto Hydroxycarbamide twice a day Monday to Friday and then 3 times a day at weekends for 6 weeks but in that time it didn’t agree with me. After 4 months of waiting I am now on Ruxolitinib 10mg twice a day as it has taken that long for my bloods to start rising again. Fatigue, bone pain and ringing in my ears are the worst so I am beginning to think that this is my new norm.

good morning, Thank you for your reply. I am coming through a tough two days spent in A&E where they suspected I had a blood clot in my lung.  After a CT scan yesterday that was ruled out luckily, as that frightened the life out of me. They did confirm that my spleen is now enlarged and they are advising my blood consultant of the findings, so who knows what the next step will be. I seem to be ok on the Hydroxycarbamide, I have to take 3 a day, every day so its quite a high dose. The thing that has got worst over the years is the extreme exhaustion (fatigue). I just cannot live the life I used to, I get to tired.  Can I ask what age you are? I was diagnosed just before my 50th birthday which is quite young :-( 

Sorry to hear about you being in A&E I think that’s the worrying thing about this is the possibility of blood clots but glad to hear you got the all clear. I turned 60 last September and 2 weeks later suffered a TIA, blood tests after that confirmed Polycythemia Vera. I have been on a roller coaster of emotions since so just having to learn how to cope with it all and hope for the best 

Hello Jem1

I’m so sorry to hear about the rough time you are having. I also was diagnosed with PV before I was 50 and was on Hydroxycarbamide which kept me stable for 24 years but now I have “progressed” to Ruxolitinib 30mg daily and been diagnosed with Milofobrosis which has caused fatigue, severe leg and bone pain and various other problems.

Sadly now I’m unable to do the long distance walking I used to do up until 18months ago. I have the pain under control with morphine tablets (80mg pd) and Paracetamol and am coming to terms with my new lifestyle. As you are still young maybe you would be eligible for a bone marrow transplant, I am too old and my cancer is too advanced for that.

 I hope you can make the most of the new technologies which are regularly being discovered, the thing is to remain positive.

Sorry I’m just realising that I have got mixed up with the replies and that I think I was replying to a post from May2020 but also sounds as though Jem1 is having similar problems … I am further down the road but coping and will not give in!

Hello Mumskaya, I’m also taking Ruxolitinib for MF which has helped with some symptoms but making others worse like hemoglobin level dropping. It’s a progressive disease, that will kill us without a SCT, like you my age eliminated me. I maintain a UPF free diet and keep a positive outlook.  I keep myself informed on any new drugs that can delay the transfusions, my biggest dread….happy to chat any time.

P.s Also coping and not giving in.

Hello Naugus,

 I also have weekly injections (which I administer myself … I feel very brave ) of Darbepoetin (Aranesp) which seems to help me needing fewer blood transfusions.

Thank you for replying and your encouragement.