Welcome to Cancer Chat Vicky.

There are a few members on the forum that have polycythaemia - [@Lovetanzanite]‍, [@Inglehufrst]‍ and [@Sabre]‍ - but as they are not medically trained they can only share their experiences with you so do stay in touch with your medical team to get any medical related questions or concerns answered. 

Our cancer nurses are available to chat to as well if you'd like to discuss this with them. Their freephone number is 0808 800 4040 and are available between 9a.m - 5p.m, Monday - Friday.

Kind regards, 

Steph, Cancer Chat Moderator

I was diagnosed with polycythemia over 8 years ago when I was 61 after a blood test following an insect bite that turned nasty. I was referred to the hospital and was told that I had this condition, although my blood cell levels were just over the normal for red,white and platelets. The consultant said she thought I had had this condition for a very long time. I was given hydroxycarbomide tablets to take. She said that I should not be frightened that these tablets are usually given for lukemia but does the job of killing off excess cells. I do take aspirin (Loss doseage) as recommended by her. Before taking the tablets I had noticed itchiness after showering on my legs and I had since I was 14 suffered with migraine symptoms on a regular basis. Since being on the medication I have completely stopped having migraines (an absolute blessing) and certainly no itchiness. I have regular 4 monthly blood tests by teleclinic (so no vists to the hospital) which are always within the normal range. I asked if taking the tablets I would get any side effects and she said, none except be careful in the sun. Of course, I do wonder what the long term effect of taking hydroxycarbimide is but the hospital does keep an eye on things.  Hope this reassures.

Hello Vicky

How are you? I hope you have found some answers. I have recently been told I have polycythemia and I have had the common and rare gene tests come back negative :) I'm now waiting on a date for a sleep apnea test to see if that is causing the polycythemia 

Have you been told anything about polycythemia and sleep apnea been related in anyway?

Hope your well

Joanne 

I have recently been diagnosed with PV and been prescribed hydroxycarbomide . This is because a JAK2 blood test identified the cause as bone marrow cells producing too many red blood cells. These drugs suppress the production. Which blood letting would not. So it's worth getting to the cause of PV

Recently been diagnosed. Being told you have incurable blood cancer is scary. Your post is really encouraging, thank you for sharing your experience.