Now part of the polycythaemia vera posse

Hey there @NinaSt! Welcome to the forum, it’s been so helpful for me, and hopefully it’ll help you too.

I’m so sorry to read of your diagnosis with Polycythaemia vera (PV) and your experiences with your first haematologist. Thank goodness you asserted yourself and changed doctors! Now you have your diagnosis and have been prescribed medicine, so you can try to settle into your treatments. Hopefully you won’t need another bone marrow biopsy, it’s not the most pleasant procedure, right?!

Wisely you’ve quickly realised that googling Polycythaemia vera (PV) can lead to all sorts of nonsense online, but you should find more accurate information with organisations like Blood Cancer UK and LLS.org. Folks here have a lot of experiences to share which I’ve found invaluable.

I empathise with so much of how you’ve described your diagnosis and aftermath. I really feel for you, it can feel so terrifying and depressing. Like you and others here I’m also considered a “young” survivor of Polycythaemia vera (PV) and after diagnosis it caused a lot of furious grief for the life I still had left, the years ahead which now feel stolen from me by this blood cancer. But the feelings of loss have faded a little as treatment has continued and, dare I say it, it seems to be working to lower my platelet and red blood cell numbers.

Keep posting @NinaSt and please feel free to share how your emotional side effects are as well as the physical, they’re all important and affect us so much. Really glad you found the forum!

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Hi @NinaSt

Another welcome to the forum. There are lots of us here with Polycythaemia vera (PV) so be rest assured that though it is a rare form of cancer you are not alone.

This link is a great source of information about your diagnosis going over the common questions you may have.

In response to your post, I think it’s really important you have faith in your medical team, so if you aren’t happy you are completely right to move to the care of another consultant.

Regarding your treatment (speaking from a similar age) there are 3 main types of treatment and it may not be a case of having just one but a combination. Which is best is different from people to people… and only knowing you and monitoring you over a period of time will determine which is best…

The three I’m talking about is:

Watch and wait with aspirin and venesections

Interferon

Hydroxycarbamide

All of these have pros and cons and I know people who have had great results and have had disastrous experiences so try not to read to much into the negatives but have faith and an open mind that your treatment is not randomly selected.

I started with interferon as I feared being on a chemo drug like hydroxy but after a change in circumstances I moved onto hydroxy and touchwood I’m doing ok and levels have stabilised to a good and healthy rate.

I was told that interferon is often issued to younger patients but the long term effectiveness and side effects are unknown as there isn’t enough data. Hydroxycarbamide however has been around for ages and is more tried and tested but it is a form of chemo.

There are other drugs and treatments however they will only be accessible if these treatments don’t work and you need to be on them for a period of time.

Basically what I am saying is, though you may have a choice, there is a possibility that their answer maybe right or wrong and your choice maybe right or wrong, but to give you the best chance of life a choice must be made.

I’d always advise to take charge and be responsible for monitoring and reporting any issues you have to your medical team to offer you advice on what’s the norm and what isn’t.

Hope you’re doing ok, the early stages are always the toughest.

But there are some amazing people here who are going or have gone through what you are so don’t hesitate to post!

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Good evening! I hope you are well, its spring and warmer outside .
I had one month intreferon injected, and my platelets decreased. Next month i inject without paracetamol, it scared me ( because first injection was with big chills), but it was ok.
So, thank you for your thoughts and good wishes.
Have a great weekend!

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Hey there @NinaSt, isn’t springtime lovely?! I’m enjoying the extra light and leafy growth all around.

I’m really glad to hear that treatment is working for you. Well done sticking with the injections, sometimes we need to remain patient and then we see these great results. Of course it’s easier said than done being patient with disorders like these…

I haven’t taken interferon but have read that it can bring on flu-like symptoms the day of injection, so it sounds like you experienced this. Does the paracetamol help with the chills?

Keep us posted about how you get on, @NinaSt, it’s so reassuring to know you’re doing well. My own platelets have decreased too, thanks to hydroxyurea and phlebotomy, and I can empathise with you about it being a big relief :face_exhaling: Would rather not be taking chemotherapy, of course, but I’m feeling grateful nonetheless!

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Yes, with more sunny days we are feeling better)
Im glad to hear that your platelets decreased, and your main thought must be the result, not the tool.
With interferon at the begining , my first injection i felt big chills ( despite of paracatamol), but later it was easier.

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Thought I’d share some long-awaited good news…

Hard to believe but after a polite request to my lovely family doctor I’ve been referred to a different haematologist who I’ll be meeting this week, what a relief!!! Never even met my former haematologist, and not due to the pandemic.

I wasn’t going to be able to trust his treatment again since he forgot he’d prescribed me daily chemotherapy, like it was a mere multivitamin or something. He was also extremely rude and patronising towards my family doctor who is the most caring doctor I’ve ever had who caught my cancer in the first place, so Dr All-Knowing had to go. Did he not check the notes he wrote about me?!

Anyway, I also now have a case manager who I’ll chat to later. Why didn’t I have one before?! I’m not even sure what to speak to a case manager about as I’ve had to manage my own care since diagnosis.

So glad I raised my treatment issues with my family doctor who referred me to a more recently trained blood cancer expert whose specialities include treating LGBTQ+ folks like myself with a patient-centred approach. Pinch me now, is this real?!

And relax :face_exhaling:

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Really good news @Duncan and I send you a virtual pinch !!!

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Aww thank you, dear @Erica! I thought of you when I shared this, imagining you gently encouraging me to assert my needs. Thank you for the motivation, I’d hug you if it was appropriate :hugs:

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When @Erica says a pinch, she means a right hook a certain Mr Tyson used to hide from :wink:
Good news then, but as for the case manager, double check the quality of the stitching in the lining, the leather on the handles and don’t be fobbed off with cheap locks.
Good luck with the new guy, show him photos of tofu in batter and use your best mafia accent and I am sure he will give you his speed dial number ASAP :slight_smile:

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Ha ha ha thanks @clickinhistory! He may be as much of a granola fan as I am, according to his About Me bumph! I’ll be sure to share my recipes to gauge his approval/disgust!!! Now I can send my former haematologist some feedback about his treatment, should take a while :memo::spiral_notepad::spiral_notepad:

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Hi my name is Mary I wa , buts diagnosed with Polycythaemia vera (PV) in September 2022 , I have been getting the pegasuy injection for ten months now, but the fatigue I have experienced has gotten so bad I had to ask my haematology nurse to stop them . My consultant has now offered me Ruxolitinib but I’m scared of the side effects

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Hi @maryjo

Firstly welcome to the forum and thank you for posting.

I too have Polycythaemia vera (PV) and been on interferon. Like they say everyone reacts differently to treatment and it’s very much pot luck. I managed really well when I was on interferon like you.

The problem with Polycythaemia vera (PV) is notably the fatigue. But the priority will always be your platelet count and hct level. The fatigue is very much part and parcel. They say to take it easy, exercise at moderate levels and stay hydrated but I know how it feels like when energy is depleted.

Remember that it’s a marathon and small steps is key than throwing everything at it to remedy how you’re feeling.

The main forms of “treatment” treatment is:

hydroxydroxy (chemo), very much tried and tested lots of data and analysis

Interferon (immunosuppressant) been around a decade, appears to have positive results but no long term data as to its lasting outcome

And Ruxolitinib which was only approved last year in England. Signs are good but i heard it’s only offered when hydroxy and interferon hasn’t worked, so them offering it to you is an advantage!

All medication comes with lots of warnings and side effects and there is no guarantee you will or won’t suffer from them…

I always say, do your research, write questions and concerns down and get them answered and go with your gut to pick and do what’s right for you.

It’s tough, and though levels are extremely important… quality of life short, medium and long term do count too…

The bcuk website have some amazing information about the condition and treatment and the support line are truly brilliant if you need to speak to anyone…

Take care and we look forward to reading more from you.

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Hello @maryjo, welcome to the forum! Apologies for not welcoming you until now. I hope you’ll come to find it as helpful here as I have. I’m really sorry to read that you were diagnosed with Polycythaemia vera (PV). You’ll find many of us here with this rare blood cancer who share really supportive tips and advice and how we’re feeling about living with it.

Although I take hydroxyurea, a different medicine to yours, I know the fatigue you speak of. It’s grim isn’t it? It took a few months of phlebotomy and hydroxyurea treatments before my fatigue faded, and it’s still the worst side effect of this cancer that I’ve experienced. Currently I’m feeling weak from non-anaemia anaemic low-iron, another common side effect of our treatments.

Others here have experience of Myeloproliferative neoplasms (MPN) like ours, and of ruxolitinib and pegylated interferon alfa-2a AKA Pegasys. I attended a blood cancer conference recently and you might find some of the information interesting. Here is my thread about the conference, if you fancied a read.

I’d say that reading about side effects of these medicines can feel scary and to be wary of where you read information. I wouldn’t just google data about Polycythaemia vera (PV) and our treatments as it’s often out of date or wrong, but stick to websites like this which shares only clinically researched information. Have a look at the MPN page if you haven’t already, it has links to the treatments we typically receive.

Looking forward to hearing how you get on, @maryjo! Please ask away and I’m sure someone will know what you’re experiencing.

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Hi @maryjo I am so glad that you have found us.
Firstly I will copy The Blood Cancer UK information on fatigue
Blood cancer and fatigue | Blood Cancer UK
I hope others will be able to share their experiences on Ruxolitinib for you.
Do talk through your fears with your medical team
Really look after yourself and please do keep posting how you are getting on

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This was published today and may help understand the condition.

A conversation with an Myeloproliferative neoplasms (MPN) specialist in Polycythaemia vera (PV):

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Thank you so much, this was so fascinating. I took many notes!

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@Duncan in true high school fashion, please share your notes or the tofu gets it :wink:

@Rammie18 will watch when I have recovered from 4 days worth of driving

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You asked @clickinhistory, and lo and behold! They’re very note-like though so excuse typos. These relate specifically to Polycythaemia vera (PV):

Interferon works better when there’s only the JAK2 gene mutation

High white blood cell count adds risk of increased progression

Having a higher allele burden, above 50 %, means more likelihood of progression to MF or other rarer MPNs

Both blood tests and bone marrow biopsies are as accurate when testing for JAK2 gene mutation, biopsies don’t need to keep being done regularly unless there are indications of progression

Neuropathy in hands and feet unlikely to be caused by medications like hydroxyurea, interferon, ruxolitinib—may be due to hyper-viscosity of blood

Bone pain is an established Myeloproliferative neoplasms (MPN) symptom

If haematocrit is high you’ll get blurry vision

Micro vascular/circularity disturbances if platelets are high

Venous clots occur more often than arterial clots in Polycythaemia vera (PV) patients from build up of plaque

Ruxolitinib can cause weight gain, not the Polycythaemia vera (PV)

Ruxolitinib impairs aspects of immunity

1 % of Polycythaemia vera (PV) patients have no JAK2 gene mutation, very uncommon, hence why JAK2 is so indicative of Polycythaemia vera (PV)

Interferon doesn’t work fast (slower than hydroxyurea in first year) so it takes time and may need phlebotomy alongside it

Stem cell transplants are not recommended for Polycythaemia vera (PV) patients as the disease is indolent, while transplant is a very risky tool (10 % chance of dying from transplant)

Manage weight, blood pressure, sugar, cholesterol

If hydroxyurea causes neutropenia then that shows intolerance to it and a reason to change to ruxolitinib

Itching is thought to be a cytokine mediated symptom, somehow these chemicals cause it

Median survival 18-19 years, not very helpful statistic as it’s too broad a range, mostly in patients aged 60+

MIPSS-Polycythaemia vera (PV) diagnostic survival tool for more refined prognosis

Younger patients have a better outcome

Secondary polycythaemia is not Polycythaemia vera (PV) but can present similarly and can be caused by sleep apnoea, smoking, testosterone

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Thank you again for sharing this @Rammie18. It so uncannily matched and confirmed much of what I’d just been discussing with my new and improved haematologist. Lovely to hear the video doctor’s unadulterated Indian accent too, brought me home for a moment!

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@Duncan tofu, the cockroach of the food world, survives again :wink:

Interesting how more real those details are, from survival rates to progressing to more interesting versions, I know my white numbers are high, seen as a “normal” part of having Polycythaemia vera (PV), yet here it is a possible signpost to interesting times.
Still think my theory of itching being caused by a hit of oxygen being absorbed by the skin is more interesting. :wink:

Makes a more rounded view point of life with this gene pool screwball off the corner pocket.

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