PV

Hi Linda,

Welcome to our community. I'm very sorry to hear about your recent diagnosis and I hope we can help support you and provide you with some useful information. 

We have information about Polycythaemia Vera (PV) on our website, as well as the chemotherapy and other treatment for it.

Although you haven't received any responses from other members yet, hopefully someone with a similar experience within the Leukaemia Group will be able to offer some personal information and support. 

If you need some more expert information or just someone to chat to, you can call our free support line on 0808 808 0000, which is open Mon-Fri, (9am-8pm).

Best wishes,

Jess

Macmillan Community Team

Hi Linda, you probably know quite a lot by now being that you post a question 8 months ago, but just in case, I thought I'd say hi, and I am sorry you have had to wait 8 months for a reply. I have PV too, I was diagnosed almost 7 years ago. Most people who are on Hydroxycarbamide tend to find it easier on their stomach if you drink plenty of water with them, and many say a little yogurt with sliced banana before and after taking your tablets, help stop and queezyness. 

If you are struggling with Hydroxycarbamide  (also know as Hydrea or refered to as HU) with ulcers for example, there are mouth washes your GP can prescribe to ease this, if you find you have been finding it unbearable to use HU, there are other treatments such as Ruxolitinib, but I think this is still on trial and not everyone gets along with it. Also there is interferon  (Pegylated interferon seems to be the most liked with less side affects). You can speak to your haematologist for alternatives avaliable. 

I hope this was helpful. I'll pop in more often and support those of us with an MPN (Myeloproliferative Neoplasm) - Polycythaemia Vera, Essential Thrombocythaemia & Myelofibrosis, as best I can.

Geoff

Hello Lynda, Geoff

i have recently been diagnosed with PV and struggling to find any support/advice from others with same condition.

Any chats/forums I can be included in would be greatly appreciated.

Take care

Chris

franc69

 Hi Sophia. I saw your post and thought I would see if there is anyone who has posted more recently on the forums as it has been a while since Geoff and Linda have posted. There is a person franc69 who has posted fairly recently so I have included him in this post in the hope he will respond.

Hi franc69

I noticed that you too have been diagnosed with PV and were posting recently. I was wondering if you could offer any advice or information to Sophia... ?

Thankyou

Hi Sophia, I have found advice through this site, Blood Cancer UK and MPN Voice, however I have struggled to come to terms with my diagnosis and at first when telling people they thought I was talking about someone else. Some months later and with my medication still being tweaked so that I can make it through the day without sleeping due to fatigue amongst other things. I don't know about you but I would like to be able to attend a support group even if it was a meet up in a park etc. Advice I would give is try not to feel guilty about not being able to do everything, speak to friends and family about how it is affecting you and take time for yourself. I keep a diary and write about how I'm feeling, level of fatigue, any side effects from my medication, sleeping patterns etc, I take the diary to my appointments with the medical team. Venesection has been on a monthly basis so far but I only get a cup of tea after and a shortcake biscuit. I only used to give blood so I could get an Orange Club Biscuit. Even though the rules have changed, I will continue to wear a mask in busy areas and public transport. Please let me know if there is anything specific that you would like advice on and I will try my best to help. Keep safe and well, kind regards, Franc

Hi Franc

Firstly Thankyou Paul for this link.

Like you Franc I am having venesection, however not being offered biscuits! Will take my own going forward! Albeit my consultant had indicated I may be having to go into tablets from August as my white cell count is too high.

I am now keeping a log of my blood counts, this is now helping me understand what is happening. Not that it makes it any easier to accept!

My night sweats are less frequent, fatigue, when I am on the go I keep going, however as soon as I sit down/relax I just fall asleep! Been like this for many years so just wonder how long I have actually had PV!

Do you take any particular food which helps our symptoms for PV Franc?

You take care

Chris.....this is my actual name, when I registered I was guided to use a different name and now unable to change!

Hi Chris, I am Franc, I didn’t change my name.   I was told by my consultant that many people may have conditions that never surface until there is a trigger etc. Personally for me I started to get cramp in my face which was a scare in itself as I thought I may be having a stroke, within a day after a blood test I was called by a doctor to tell me I had PV, consultant appointment followed 4 months later in December of last year. I too have night sweats and the heat at the moment doesn’t help. Have you fallen asleep in any unusual places yet? I was on a bus the other day and found myself at the bus station, not the one I was after mind you. I don’t eat any differently Chris though I probably should as with the fatigue and side effects of my medication I’ve become a bit anxious thus I don’t leave the sanctuary of my garden if I can help it and have gained a bit of weight. At least you now know the reasons for your symptoms albeit not the outcome you would want. If you go on the Macmillan site they have a chart about fatigue based on a 1 to 5 scale of how you feel each day, I use it and this helps me understand that there are times that I need to stop and rest. Which area do you live Chris? I am in Accrington as I would like to see if there is enough people to start some kind of support group. Keep safe and take care. Franc

Hi Franc

Bless you, bus journey nightmare! I have fallen a sleep at a very noisy concert, various times at friends dinner tables , or have had to excuse myself to have a nap on their sofa! At least now I can be excused!!

I am very much still working, and will go for a swim before work which is a good start to my day and hope that can continue for a long time! However like you lockdown weight gain!

Only meds I am on at the moment is baby aspirin and blood pressure tabs. May I ask Franc are you on any different meds?

Would be fab if you could set up a group with others  with PV.....whilst your chilling in your garden! I live in Bristol, hopefully we can communicate with others dotted around the country Franc!

Happy Friday and take care

Chris

Hi Chris, I have been off work for 6 months as falling asleep in the nursery I work in wasnt an option, but I am hoping to start a new job in a primary school in September as the hours are less per day and I will have week off every 6/7 weeks so I can rest then and fit in any appointments needed. I too take aspirin along with fexofenadine which is a stronger anti histamine for the itching , allopurinol to alleviate gout symptoms,  pramipexole which I take for the cramps I still get and venesection as needed. Having more blood tests next week to check various levels of different  things and a blood pressure monitor overnight to check on that. Can I ask Chris, if its not too personal, how did you find out about your PV? Enjoy your weekend and keep in touch.  Keep safe and healthy,  Franc