Now part of the polycythaemia vera posse

So lovely that you walked with friends. My best friend went for a walk where she lives as we’re so far apart these days, and that felt so supportive. Amazing how the gestures of loved ones can be so energising and caring :smiling_face_with_three_hearts:

Hope your phone makes it through its puddle bath. Sure the photos are still great, albeit bubbly and watery!

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Hey there @Jonpd, thank you for reminding us Polycythaemia vera (PV) newbies how successful the hydroxyurea treatment can be. I keep your experience in mind when I get down about taking daily CHEMOTHERAPY!!! It still freaks me out a little, to be honest, hence the capitalisation.

I’m of the generation where anything big C-related sounded like the end was nigh, so I’m having to retrain myself to trust that those of us with these forms of cancer can have long, fruitful lives such as yourself. Still so sorry that your Polycythaemia vera (PV) transformed into myelofibrosis. I wonder if you have any tips from your long experience of living with Polycythaemia vera (PV)? Stuff you wish you’d known all those years ago? No pressure to respond, of course. Hope you’re keeping well.

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Hello @Ismawati64, so lovely to have you join us! Thank you for the beautiful image, spring has clearly sprung where you are!

I’m really sorry to read that you too are living with Polycythaemia vera (PV) and those worrying blood pressure readings. Although it’s meant to be rare, there seem to be many Polycythaemia vera (PV) and Myeloproliferative neoplasms (MPN) survivors here on the forum with varied experiences like you say. It heartens me to think that you’ve found the experiences shared here to be helpful on some level.

Sorry to read about your treatments stopping with those recent blood pressure changes. I wonder what is causing that? My blood pressure readings are never accurate when taken by nurses I don’t know, presumably due to anxiety in medical settings, but regularly much lower when I take them at home. Do you take your blood pressure at home too? My doctor is fine with me emailing her a week or so of readings in advance of checkups as she knows mine appear higher just from attending appointments.

It’s interesting that you had lower back pain, foggy brain and mood swings after starting interferon. They are common side effects with hydroxyurea too, I know those symptoms only too well. Can’t help but think the lower back pain is due to most of our blood production occurring in our pelvic bones. Something like 80 % of us get chemo brain, apparently. Imagine if our doctors warned us of the first few months of fogginess so we could plan around it?!

Let us know how you get on and what you find helps lower your blood pressure. I’m sure you know about decreasing salt and cholesterol intake and so on. If you’re ever offered a beta blocker to help lower blood pressure I would say from my experience that they’re tolerated well and are meant to have few serious contraindications with other medicines or treatments. They’re also a stealth anti-anxiety medicine apparently, so that’s a bonus!

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Hello @Duncan @Rammie18 @Erica

Thank you for the warm welcome!

Thanks for sharing this summary, @Duncan.
Many points are relevant to me and my experience.

When I was diagnosed with Polycythaemia vera (PV) early 2022, one of the blood parameters the Haematologist used was Vit. B12. My Vit B12 level B was 1183 pg/L (reference 187-883 pg/L). They said that it was a useful indicator for countries with low laboratory capacity to diagnose Polycythaemia vera (PV).

Regarding Bone Marrow (BM) biopsy, I didn’t take that step because several blood test results and the DNA test already confirmed that I have Polycythaemia vera (PV) ( JAK2 V617F positive mutation). So I’m that I glad that I skipped the BM test.

Thank you also for explaining the potential cause of lower back pain. Every time I read again some of the postings in this group, I have a better understanding of my pain and complaints :smile:

About my knocked-down events, I found a scientific paper which was explaining how inhibitors take all sugars from our blood to pressure JAK2 to be well-behave. When I was knocked down, sometimes my blood pressure was normal, sometimes high but the blood sugar was between 3-5 mmol/L. So I always have sweets or chocolate in my bag and, when possible, get hot tea with sugar.

Thanks for the sharing and listening :blush:

Cheers,
@Ismawati64

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You’re most welcome, @Ismawati64! The more sharing here, the merrier I find, although of course I wish no one had to live with blood cancers in the first place.

I’m glad you’ve not had to endure the dreaded bone marrow biopsy! From my understanding they aren’t necessary to diagnose MPNs but are helpful for telling whether our blood cells are increasing/changing in uncontrolled ways, so they can be useful if we get any symptoms going haywire.

I feel slightly guilty admitting this but my BMB went really smoothly and I was fortunate to have a great, calm surgeon anaesthetise me so I only felt movement and disembodied scraping in my pelvic bone rather than any pain. It was a bit like having a tooth pulled under anaesthetic, if you know that sensation. So if you ever need a BMB make sure to ask to be anaesthetised!

That’s so interesting about your B12 reading, and that sugars affecting the gene mutations we have. Not heard about B12’s links to Myeloproliferative neoplasms (MPN) diagnoses. I’m vegan and have low B12 in my diet, but I wonder if mine was higher at diagnosis too…

I’ve got the JAK2 mutation too, I think like more than 95 % of us Myeloproliferative neoplasms (MPN) survivors, so it’s a pretty big warning sign that we’ll develop these blood cancers. Does it seem like the science you read suggests eating sugary stuff is helpful for offsetting hydroxyurea side effects? I’ve vaguely wondered about blood sugar levels too as I’m usually not a sweet tooth but have been more since diagnosis. I usually carry something sweet too, like granola bars or a banana for those moments where I can feel my energy crashing. Please share that research here if you’d like, I love some dry medical jargon! Makes these blood cancers seem a bit more manageable if I understand them better.

And I just wanted to reiterate what dear @Erica said about there being so much other great information on the forum. Plenty of other Myeloproliferative neoplasms (MPN) survivors share all sorts of essential information and personal experiences so have a look around.

Really glad you’ve found the forum!

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Thanks, @Duncan

This is the (short) paper that I found that explains the JAK2 clone as sugar thieves :smile:
Although it was a research in mouse model, I found it interesting to my case of hypoglycemia.

The cartoon is interesting :smile:

Here is the intro paragraphs:

Unexplained weight loss and cachexia are key hallmarks of cancer and advanced myeloproliferative neoplasms (MPNs).

In this issue of Blood , [Rao et al](DOI 10.1182/blood.2019000162) describe their investigation of the metabolic response to JAK2 mutation in mouse models, which demonstrated that the presence of the JAK2 -mutant clone leads to hypoglycemia and adipose tissue atrophy as a result of scavenging nutrients to meet the increased glucose requirements of erythroid precursors.[1]

They identify the enzyme Pfkfb3 as a key mediator of glycolysis and show that inhibition of Pfkfb3 reverses hypoglycemia and reduces the hematopoietic manifestations of the disease.

These data offer a first mechanistic insight into a poorly characterized aspect of Myeloproliferative neoplasms (MPN) disease biology, and provide a clear preclinical rationale for further investigation of the metabolome as a therapeutic target.

Cheers,
@Ismawati64

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Ha that is an interesting cartoon! Thank you for sharing that information, @Ismawati64. My sleepy brain can’t make sense of it yet so I’ll come back to it. It’s kind of got a look of “let’s make your terrifying gene mutation look cute!”

Personally I think more blood cancer-related literature should look like kawaii Japanese anime with cute characters like this, but that may just be me!

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@Ismawati64 That cartoon explains a lot about the energy crashes, why we go on eating binges, especially high sugar sources like sweets and biscuits or in @Jimbo165 @Erica and a few others on here, cases, caterpillar cakes.
The times I have thought it might have been diabetes, but the tests came back not, but this does explain also a weight issue.
Many years a go I had a viral infection that lead to me gaining weight to nearly 17.5 stone, I crashed physically, lost weight rapidly in a few weeks down to nearly 8.75 stone, being 6’32 and always nearly 12.5 stone, this was a shock to the body.
Struggled with my weight ever since and finally listening to a specialist on one of the medical shows on Radio 4, I came across the theory of the body having a survival strategy from our earliest ancestors.
If our bodies go through a few cycles of rapid loss and then gains, it stores an optimal weight in our genetic memory bank. So as our body starts to adapt to stress via the environment, physically and emotionally, the gene memory kicks in and try’s to reach a weight where it has learnt it has enough energy stored to survive.
It is the theory that has helped docs understand why many dieters end up with more weight on after losing it.
Throw in Polycythaemia vera (PV) and it’s sugar theft, weight is stored because the body cannot reach it, so stores more, not realising we already have it.
Just wondering if this is why people say they start losing weight after starting drug treatment? Nothing to do with the Polycythaemia vera (PV), just the drugs stopping the sugar theft and our bodies just readjusting to having a normal food source.
Thanks for sharing that info.

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Apologies for the late reply, @Duncan. I seem to be having problems with the App but, i wanted to say … thank you for sharing your news. I’m so happy to hear you’ll now be getting looked after by a caring team.

You look after us all on here :slight_smile:

Keep us posted :blush:

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Oh no need for any apologies @Lynd, we don’t need to add any extra stress to ourselves!

Thank you for your lovely compliment, you made me blush! I try to offer the support I’d hope to receive myself, which we’re so fortunate to find here on the forum in abundance :smiling_face_with_three_hearts:

Contradicting myself here but I’m sorry not to have responded to your previous posts. I see you’re also a newly diagnosed survivor of Polycythaemia vera (PV), I’m so sorry you live with it too.

How are you getting on with it all? Sounds like you plumped for the interferon treatment, I hope it’s going well? Got my monthly blood checkup on Monday so I’m keeping my fingers crossed my haematocrit is behaving so I won’t need phlebotomy!

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@Duncan please do let us know how you get on on Monday, I will be thinking of you.
Take lots of care x

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Will do, dear @Erica, thank you!

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Thank you for your lovely message @Duncan and for your ongoing support x

Yes, I chose PEG, currently on 135 weekly, as my platelets are still high. I’ve heard interferon takes time, but my haematologist is hoping to get my platelets down, and then I can drop to a lower dose. Side effects are tolerable, but I’ll be happier on a lower dose, so I’m pushing through. Injection 20 tomorrow, time does fly. I’ve not needed venesection since starting the treatment, but my last hct was .44. Another blood test at the end of the month, so we’ll see.

I hope your tests go well, on Monday :blush:

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Oh you’re most welcome, @Lynd! It feels like such a supportive community for us here, doesn’t it?

It’s so great that your treatment is going well. Long may that last! I love your attitude, it really can feel like tolerating the discomfort in the short-term while hoping for it to ease up a little overall. Bet you didn’t think you’d be injecting yourself so often?!

It’s also great that you haven’t needed phlebotomy. I didn’t realise until seeing my new haematologist that the aim was not to need the bloodlettings at all! I was rather squeamish with all the needlework initially but soon desensitised. It’s a relief in the months where I don’t need to have blood removed :face_exhaling: Well done getting your haematocrit so low—in the normal range for folks without MPNs, no less!

I look forward to hearing how you get on!

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Good luck this afternoon, I am off to the same concert today, the Sisters of the Leech Ward have been getting good reviews recently :wink:

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Hope yours goes well today as well, @clickinhistory. We’ve synced up again! There’s a (partial) eclipse here later so that should make things even more interesting than usual :crescent_moon::drop_of_blood:

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Hi @Duncan , I do love your messages, they make me smile.

I hope all went well for you today :crossed_fingers::two_hearts:

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Aww you guys!!! I’m feeling very held in mind today, thank you all. Thank you @Lynd, it’s nice to feel understood. Had my blood taken earlier with no issues and now I await the results with bated breath :grimacing:

I won’t guess how my results will be today as the last time I did so my haematocrit had jumped up and I had to have phlebotomy.

Anyway, better get ready to go and see 35 % of the eclipse happening over here! Slightly excited but also worried our dog will look into the sun!

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Oh @Duncan and your 4 legged friend please do tell us about your eclipse experience, but protect your eyes.
I will just see it on our TV.

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Hi @Duncan, I can totally relate. When I’m feeling tired and thinking I’ll need a venesection, my bloods are usually ok so I’ve given up and now, just wait and see.

Hoping all is well for you and you enjoy your evening :slightly_smiling_face:

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