Now part of the polycythaemia vera posse

[Duncan]

Really is interesting. Sometimes a factoid or two can almost feel like a pleasant surprise, sometimes they add more worry!

I’m not usually keen to ascribe too much to one doctor’s findings, but this one speaks of his many patients and wide experience, and in a caring way, which makes me think he’s on the side of his patients.

Sorry if the note about higher white blood cells is alarming, but as we know these are all adaptable through our best efforts and diet and so on. Plus it’s early days for us with our respective PVs and we’re still settling into treatments. I’m sure you can bring those cell counts down.

[Marylin]

I really tried to concentrate on watching the video, but have to confess to falling asleep. As far as I understood there is no one miracle cure either for Polycythaemia vera (PV) or for its side effects. Each of us reacts differently to the. Same drug, no. One size fits all.

I am lucky in that I tolerate Hydroxycarbamide fairly well, and warfarin and aspirin seem to be keeping the clots away and my hair has regrown. Ido t know if the pulmonary hypertension was caused by the medication but will be seeing the consultant in May.

I haven’t had a face to face consultion for over two years. I have a full blood test done at the GPS. Then a telephone consultation the next. Day. I have anINR test monthly it stays stable as long as I don’t eat. Anything green, not a lettuce leaf or a pea. A bit of a pain, there is only so much cauliflower or sweetcorn one can stomach. I am not fond of carrots or swede. Venesection I found extremely painful and do not wish to repeat that treatment.

You do need to be able to trust your consultant, anxiety levels seem to rocket with Polycythaemia vera (PV), molehills rapidly become mountains using up energy you don’t have. Depression lurks waiting to pounce as fatigue grows, I have to resort to trashy novels and us tv home refurbishment programmes which I am going to do now. Happy Easter to all! Marylin

[Duncan]

Ha me too @Marylin! My brain was so full of Polycythaemia vera (PV)-related information yesterday that it tired me out enough to sleep well for a change!

I’m so glad to read that you’re tolerating hydroxyurea and your other medicines so well. This is how it should be and isn’t it lovely when our bodies agree with the research?! Trusting our doctors is a must, I’d say, as our mental health affects our physical health and vice versa.

[Duncan]

Speaking of mental health, and I’m aware that we don’t all have the same healthcare options or privileges, but after nearly a year since diagnosis and never meeting my former haematologist or even hearing from him I’ve been able to change to a new one who actually cares! He met me yesterday for an hour and had me in tears from relief just by reassuring me of my positive progress with my Polycythaemia vera (PV) treatments!

My care plan—I now have a care plan!!!—is to continue as I am for now, but to try taking my daily hydroxyurea in the mornings to see if it’ll improve my fatigue symptoms. If not, I’ll go back to taking it with my evening medicines. I’m going to be checked for sleep apnoea in case I have that as it affects oxygen intake which alters blood count readings and thus Polycythaemia vera (PV) treatments. I’m also going to come off phlebotomy! I had the impression that I’d have bloodlettings for life, but no! Going to miss my nurses

Something I thought would be of interest to others who are understandably hesitant or concerned about taking a chemotherapy like hydroxyurea that really reassured me was my new haematologist told me there are decades of statistics of hydroxyurea use due it being the main treatment for kids with sickle cell anaemia, and yet research doesn’t show any greater likelihood of these kids growing up to develop other cancers. It would seem that despite the warnings on its packaging, hydroxyurea really is a ‘mild’ chemotherapy with little to no evidence of it causing other cancers. It’s also not a risk for sexual partners, again due to evidence-based research over decades.

Not to show off but it turns out my new haematologist trained with that fancy Myeloproliferative neoplasms (MPN) specialist who I heard at the recent blood cancer conference, Dr Gotlib, who published those hundreds of Myeloproliferative neoplasms (MPN) research papers. I didn’t know I’d be referred to a fancy new haematologist trained by a world expert, but I’m very thankful! My new haematologist is also just a lovely person and very empathetic. I instantly feel totally held in mind and contained by his holistic care. Who’d have thought it! Such a relief. And relax

[Lucky]

Diagnosed with Polycythaemia vera (PV) about three weeks ago. It is clear that I have had it for many years (certainly since 2016 but I suspect far longer). The diagnosis is rather a relief. It has been interesting reading about Polycythaemia vera (PV) both in the excellent Blood Cancer UK Myeloproliferative neoplasms (MPN) booklet the consultant gave me and here online. Symptoms I have just taken for granted and wouldn’t think of telling a doctor about turn out to be Polycythaemia vera (PV) related. My wife has also been learning and told me it explains a lot.
By the way, my username is not ironic or sarcastic in any way, I really am lucky it isn’t worse and that my symptoms are mild (I’m also lucky in winning competitions, raffles, random draws etc).

[PollyVera]

@Duncan - thank you so much for taking the time to write a comprehensive summary of the Polycythaemia vera (PV) recording; lots of interesting information.
I am really pleased you have now got a knowledgeable and interested haematologist. I bet that’s made a huge difference.

[Duncan]

Hello there @Lucky, you have a great username! I’m so sorry to read you’ve been diagnosed with Polycythaemia vera (PV) too, and so recently. Wow I imagine it’s all pretty ‘live’ and raw for you right now, despite suspecting you’ve had it longer. Thank goodness you’ve found this forum. Hopefully you’ll feel supported here in bringing up stuff that’s affecting you—you’re now amongst really lovely fellow survivors.

You’re so right, the literature that Blood Cancer UK researches and shares for free is so good. When in doubt, I turn to it for facts and support. It’s good for sharing with loved ones too when it feels like the right time. I hope your consultant also supports you well in living with Polycythaemia vera (PV) and all its oddities. Sounds like you’ve got great support in your wife. I feel fortunate that my spouse is learning about all this alongside me, I’ve been such a mess since diagnosis last year!

As you’ve mentioned your suspected symptoms going back years, do share them with your haematologist as they’re sure to find them helpful on some level. The way I see it is the more we tell our haematologists about our weird new side effects and old quirky ailments the more thorough the scientific understanding of our cancers will become. For example, my new haematologist confirmed that my heart attack many years ago due to a blood clot was very likely linked to what became Polycythaemia vera (PV). If only I knew all those years ago!

Looking forward to hearing how you get on, @Lucky. Make sure to let yourself feel it all as you settle into any treatments and keep note. Many folks find journalling and other expressive outlets really helpful for beginning to process the shock of these diagnoses. I find photography, writing and therapy are my best ways to get it all out. I hope you get through this early stage as unscathed as possible! Let loved ones look after you.

[Duncan]

You are most welcome, @PollyVera! I’m so glad @Rammie18 shared it, he had perfect timing as ever. It really is fascinating what we’re living with and how our bodies deal with it. I’m keeping my fingers crossed for potential remission from MPNs in our lifetimes

Thank you, it really is great about my new haematologist! Again, I cringe at my good fortune and not wanting to rub it in for those having trickier times with theirs. To be honest I’m surprised at myself for seeking a new one—wasn’t sure how well it would be accepted as my healthcare organisation here is sort of patient-centred, which I never really experienced in the NHS. Still figuring out the edges of Obamacare health insurance.

Going to email my new doctor to thank him for his approachability and reassuring nature, it’s like night and day compared with the former one!

[clickinhistory]

@Duncan teach you to gloat about your posh chairs in the leeches station
Great you get a top flight doc, I get the express check out one nice guy, but busy busy busy.
I guess this site has become a place that information of symptoms, progress and the role that a rare cancer has in our lives.
Even the shared parts between the various cancers become important knowledge to our own journey.
I guess that part of Polycythaemia vera (PV) is the life time “jail sentence” in a sort of open prison, but subject to recall to higher security at any time, that has a long term wearing down affect on our lives.
We try to live our lives to the best but we cannot take our eyes off the big centre defender breathing down our necks. Just yesterday, I realised I had cut or had a splinter, my hand under the thumb on my palm. Not until it had swollen up and was an angry throb after I had caught it. Of course this morning, all my arm and hand joints are stiff from the infection.
This is just one example of how alert we need to be on our bodies at all times with this Polycythaemia vera (PV) and how just a smallest cut can be an issue to our lives.

[Erica]

Hi @Lucky a great big welcome to our forum, you and your wife are very welcome.
It is interesting what we learn in hindsight isn’t it.
I am learning things and seeing things about my life I never saw before.
I also think I am a very lucky girl as I was diagnosed with another blood cancer 20 yrs ago and I have been on ‘watch and wait’ (or active monitoring) for that time.
I would say give yourselves plenty of time to process things, really look after yourselves, be kind to yourselves and spoil yourselves, you are the same people as you were before you got your diagnosis.
If you would like to speak to someone the Blood Cancer UK support line is there for you on 0808 2080 888, bank holidays opening hours apply.
Please do keep posting I look forward to hearing more about you both
Please do keep posting as I look forward to hearing more about you both.

[Lucky]

Thank you.
I think the place I was before diagnosis was worse - being investigated for lung cancer (someone I know died less than two weeks after diagnosis), bowel cancer and others. The Polycythaemia vera (PV) diagnosis was something I understood as my father had a similar bone marrow cancer for 20+ years. At the moment I’m OK.
Currently mulling over whether to have more interventive treatment; hydroxycarbamide and β interferon have been offered. The fatigue and brain fog side effects for hydroxycarbamide sound awful - all the people above posting above about them have my deepest sympathy. The regular 'flu-like symptoms after the β interferon injections sound grim too. There is also the possibility of just sticking with aspirin and weekly venesection. My arteries are clear, cholesterol good and blood pressure OK so this is a viable option, but a stroke, heart attack or embolism are all non-trivial.
One complicating factor, albeit a secondary one, I have a small business with several employees. We are highly specialised and if I’m off for several months getting used to hydroxycarbamide it would pretty much end the business. The business has only just returned to profitability after the effects of Covid (we still owe quite a sum) so is not as robust as it was in 2019.
Difficult decision.

[Lucky]

Thank you Erica.
Oh yes, hindsight is wonderful. Very occasionally it is useful when a similar situation arises.
I’m really OK with the diagnosis, just got this difficult decision to make about treatment.
Glad you are lucky too. It could all be so much worse. Today I feel fine, the sun is shining, I’ve helped my wife in the garden, I might do some DIY and we are seeing friends tonight.

[Erica]

Hi @Lucky treatment options really are dilemmas.
All I would say is perhaps write down all your questions (and no question is a silly question) for your medical team, a specialist nurse is often a good contact, if you have one, also discuss practicalities.
What a lovely day you are having, your wife and friends are priceless.
Please do keep posting and I hope others will share their experiences too.

[Duncan]

Hey @clickinhistory, just wanted to wish you well for your walk! I imagine you’re doing it now or soon and I hope that pesky inflamed cut/splinter isn’t too irritating or taking your mind off enjoying your massive achievement. Really looking forward to hearing how your walk goes, and any photos you’d like to share!

[clickinhistory]

Just posted on on your thread. It was a great evening, John is a great character and his daughter was lovely, my best friend turned up with another friend. Some could not make it, but we had a great walk, despite the cold.
Phone found a puddle so some of the later shots came out a bit artistic and no, no booze was taken so can not be blamed

[Jonpd]

I had Polycthemia Vera for 25 years (I have moved on to Myelofibrosis).

For most of this time I was treated with Hydoxycarbamide with no side effects and during that time I was able to live a normal life.

I did have regular checkups with my Haemotologist who adjusted the dose as necessary.

I appreciate that others may react to the medication differently.

[Ismawati64]

Hello @Rammie18 and everyone,

I’m new to this group but I’ve read almost all of the posts in this long thread (posted from June 2023 until this week).

I’ve been diagnosed with Polycythaemia vera (PV) (JAK2 positive) in March 2022 when I was 58. My platelets, white blood count, haemoglobin and hematocrit were off the charts.

After that, for 12 months, I had venesections and low-dose aspirin. I took Apixaban only when I was travelling on a long-hour flight.

In the first month, I had weekly venesection, and then after that bi-weekly, and then monthly and then bi-monthly.

After all blood parameters near the normal range, inJuly 2023 I was prescribed with Peg-interferon self-administered injection at 0.45 mcg/week.

The side effects of the first three months was awful - lower back pain, foggy brain and mood swing. I broke down a couple of times for about 10-15 minutes, cried and sobbing, but after that the emotion faded away. I still have venesection every 2 months.

Occasionally, I felt knocked down, like a robot lose its power. I think my blood sugar was low, so I drink tea with sugar and had cookies or chocolate bar (always had one in my bag). After 30 minutes usually I would be back to normal.

After 6 months, the dose increased to 0.90 mcg/week. All blood parameters are now within the normal range. My Haematologist had cancelled my last venesection appointment.

All is well until my last jab a couple of weeks ago. My blood pressure went off the chart again, within 149/92 to 166/98. I never had this record before.

The nurse held my peg-interferons and told me to talk to my GP (useless) and left me without any options to deal with my Polycythaemia vera (PV) and conditions. I was upset when the nurse decided to stop my Peg-interferon and sent me to A&E which increased my blood pressure (up to 182/98). I’m waiting for my next consultation with my Haematologist to decide what to do next.

After reading some of the posts (a lot of very useful information! Thank you all for sharing!), I think I will have to continue the venesection but carefully checked my Haemoglobin level at home.

I just want to share my experience with Peg-interferon. And as you said (and others too) that every one of us reacted differently to Polycythaemia vera (PV) medication/interventions.

For young people prescribed with Peg-interferons, watch out for your first three months’ side effects. Stay positive, walk outdoors, do meditations or yoga and try to control your mood swing.

Take care everyone!
Hope you have a nice Easter break

Cheers,
Ismawati64

[Rammie18]

Firstly welcome @Ismawati64

This forum is a great place to share experience , and gain advice and support.

Thank you for posting and it’s great to hear your experience and importantly that your levels have lowered.

That blood pressure is high and I’m glad you’re getting that looked it. High blood pressure can be linked to so many things (age, stress, mobility, medication etc) and the best thing is to do something about it when you notice it.

[Lucky]

Thank you Jonpd, very helpful to read this. After comparing the side effects of α-Interferon and hydroxycarbamide it really looks like the latter is best for me. If I get 25 years of normal life from it I will be delighted!

[Erica]

Hi @Ismawati64 a great big welcome to our forum.
It was also very helpful to hear your medical history.
I am glad you have found this thread useful, please do read other threads as well.
I find that although we might have different medical histories we sometimes share similar fears, thoughts, feelings and practicalities.
I also believe in outdoor, reasonable, exercise (I am a walker) and I am a Pilates girl.
Look after yourself