Recently Diagnosed with PV

[Watts]

Hi everyone, hope you’re all doing well. I am 49 years old and have been diagnosed with polycythaemia vera back in December 2023. Needless to say, it was terribly shocking and stressful for myself, family and friends.

My husband and I are both healthcare professionals working for the NHS. You can imagine our shock as we found out that my bloods have been deranged since 2014 (I take annual blood test due to my idiopathic hypertension). As you know, we are not allowed to look at our own or our family/friends’ medical records. I’ve been seeing the same GP since 2014 and she never flagged my consistently high platelets etc. Whenever I call the surgery to ask for the results of blood test, I was always given the answer “It’s all satisfactory and no need for a consultation.” I’ve also been to the same GP a few times to ask about my urticaria/rashes when I shower, and chronic fatigue and shortness of breath. I was just given cetirizine for the rashes, and the explanation for the fatigue and shortness of breath is my weight gain. This is clearly a case of missed diagnosis. It was only when I was seen by a new GP last July that I was urgently referred to the haematology consultant. He was absolutely surprised that no one has ever informed or referred me to secondary care. We are all familiar with the NICE Clinical pathway in referring patients with abnormal platelets.

Has anyone had a similar experience of having been diagnosed late with Polycythaemia vera (PV)?

I’ve had a chat with one of our friends who is a Stroke Consultant, and he said sadly, some GPs are not that familiar with Polycythaemia vera (PV) (or other blood cancers) that it is sometimes just diagnosed in secondary care once the patient has had a stroke.

I was prescribed aspirin once a day, and initially advised to just “wait and see” by the first haematologist that we’ve seen. However, we do have the advantage of different medical perspectives and we decided to seek a second opinion. I was then referred to a haematology professor who specialises in MPNs, and was advised to start on pegylated interferon alfa-2 treatment.

Anyone else on peg-interferon, and any side effects that you’ve experienced?

I had horrible back pain with it on week 6, that they had to temporarily stop it. I could hardly walk, sit or move - which was very distressing as I am very familiar with symptoms of cancer mets, and this was one of them. Fortunately, the MRI scans ruled out skeletal causes so it was thought that the pain was caused by the treatment. They have since restarted the peg-interferon, and I’ve been on it for almost 9 weeks.

I’m looking at going back to work soon. Feel free to give me advice on going back to work, with weekly peg-interferon therapy. Thanks for reading this.

[Duncan]

Hello there @Watts, welcome to the forum! I’m really sorry to read of your diagnosis, I know that feeling well. I was also diagnosed with Polycythaemia vera (PV) last year at a similar age and also likely had symptoms for years. In my case, I had a heart attack many years ago despite being healthy and active.

Like you describe so well, it’s pretty shocking, right?! I’m glad you have your background in healthcare to help with understanding the treatments and reasoning behind them. It’s great too that you have a supportive husband and were able to be referred to a haematologist once your symptoms were noted. If your shock is anything like mine, it may feel a bit like grief for your former self. I hope it passes swiftly.

Because I was considered at high risk for clotting events, despite being a “young survivor”, I was put on daily hydroxyurea, continued daily aspirin, and had fortnightly phlebotomy which is now occasional, usually every other month. I’ve heard good things about interferon and I’m sure other Myeloproliferative neoplasms (MPN) survivors here will share their experiences of it.

I attended a blood cancer conference earlier this year and you might be interested in the notes I took relating to MPNs such as Polycythaemia vera (PV).

Just wanted to send a big warm welcome and say that although we have these weird rare blood cancers there are plenty of us here to support you in living with Polycythaemia vera (PV).

Do please let us know how you’re doing.

[Erica]

Hi @Watts I am really sorry to hear about your experiences.
Blood Cancer UK and other blood cancer charities continue to campaign for earlier diagnosis and looking at ways to get the message out to medical professionals.
How are you and your family and friends holding up, obviously it can bring up even more emotions and issues being in the medical profession.
I have found that this is the one place that I can really say how it is for me.
I will copy the Blood Cancer UK details on finances and work, it is not really from the angle you were talking about, your question about returning to work is really to discuss with your medical team as they know you, your medical history and medical role.
Blood cancer: money and work | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888.
Look after yourself, be kind to yourself and please do keep posting and let us know the decision you decide on work

[Rammie18]

Hi @Watts

Firstly welcome to the forum and thank you for posting.

Already lots of sound advice and support posted which I can only echo

It’s quite normal it seems for people diagnosed with Polycythaemia vera (PV) to be on watch and wait and have venesections and aspirin to get there hct levels down and diagnosis how you body reacts in producing the levels it does, from this they can offer the best course of treatment.

I initially was on interferon and to summarise, I was doing really well on it, little to no side effects experience bar an initial flu like symptoms and injecting yourself with it was a breeze. It’s a slower rate treatment but “younger” folk have responded well to it though its longevity is a bit of an unknown when compared to the tried and tested hydroxy.

I was taken off it as a precaution as after a 1.5 years of taking it I suffered a heart attack though I think this may have been brought up by stress and the covid jabs as I’d had a fair few at the time.

I think whatever treatment you have it’s best to give your body and mind time to adjust and see if it fulfils its purpose. I’d strongly advise keeping a diary and noting how you’re feeling on a day to day basis and taking this to your appointments rather than instantly reacting to differences you experience but I know you know this already

There are a lot of peoples experiences of Polycythaemia vera (PV) at different stages on the forum and the number of members of Polycythaemia vera (PV) (though it’s not great to say) is increasing but I guess a positive in that is that there’s a lot more people who have give you a patient insight into the condition to share and support each other.

To answer another part of your post, I think I was experiencing symptoms of Polycythaemia vera (PV) in my twenties before being diagnosed when I was 38. I don’t really blame anyone as thankfully nothing severe had happened and the symptoms could’ve been associated with so many things. I just glad it wasn’t me being paranoid!