Now part of the polycythaemia vera posse

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Hi Yuyun,

Glad to read you are making good progress.

I’m fairly newly diagnosed and have never seen the sugar thief cartoon. Is there an explanatory text that goes with it?

Thanks.

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Hi @Lucky

Welcome to this friendly support group. I am sorry that you are newly diagnosed. Please don’t be sad or upset. I am optimistic that we can live with Polycythaemia vera (PV), and it’s manageable. Some friends in this thread live with Polycythaemia vera (PV) for more than 20 years.

I was diagnosed in March 2022, and after 12 months of monthly venesection, my blood parameters reached near the normal range. I chose to be treated with peg-interferons 0.45 mcg/week. After six months of combining peg interferons and bi-monthly venesection, my dose increased to 0.65 mcg.

The treatment works well for me. In the first three months, the side effects kicked in, especially blurry vision, severe lower back pain, mood swings, and sometimes I felt down or depressed and cried for no reason :laughing: But I know that THIS IS NOT ME! So I took a deep breath, meditate for 10-15 minutes, and I am good :slight_smile:

The cartoon was from a scientific paper titled Sugar Thieves and addicts: Nutrient Subversion in JAK2 MPNs by Charlotte K. Brierley and Bethan Psaila (2019).

The abstract of the paper describes:
"Unexplained weight loss and cachexia (loss of appetite), critical hallmarks of cancer and advanced myeloproliferative neoplasms (MPNs) have been the focus of this study. In this issue of Blood, [Rao et al.] present their investigation of the metabolic response to JAK2 mutation in mouse models.

Their findings reveal that the presence of the JAK2-mutant clone leads to hypoglycemia and adipose tissue atrophy, a result of nutrient scavenging to meet the increased glucose requirements of erythroid precursors.

They identify the enzyme Pfkfb3 as a critical mediator of glycolysis. Glycolysis is the metabolic pathway that converts glucose into pyruvate and, in most organisms, occurs in the liquid part of cells. The free energy released in this process forms the high-energy molecules. This process demonstrates that its inhibition - the act of stopping or slowing down a process- reverses hypoglycemia and reduces the hematopoietic manifestations of the disease.

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

Further research in this area is urgent, as it could lead to significant advancements in our understanding and treatment of MPNs."

I hope this helps.

Best wishes from the train between Ottawa and Toronto,
Yuyun

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Hi Yuyun,

Ah, thank you, the cartoon makes more sense to me now.

Glad to read you are good and the treatment is working well.

Lucky

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I’m really glad that factoid about sickle cell and long-term hydroxyurea use is reassuring to you too, @Lucky. I keep a little list of reassurances and remind myself at moments of anxiety. They’re good for reassuring others too, like our loved ones who worry about our prognoses with these scary-sounding chemotherapies and other treatments. I find people are more weirded out by phlebotomy still being a medical treatment, which is fair enough—seems so mediaeval to me!

Totally know what you mean about pain tolerance. We can surprise ourselves in what we can deal with if we have an idea of what we’re getting into, like tolerating phlebotomy once we know it’s usually as simple as just a little needle prick. I find it’s the surprise types of pain that can be more difficult, or less predictable. Sorry to hear of that kidney stone. Weirdly I had a nasty kidney infection last year which led to me having my blood tested which then caught the JAK2 gene mutation and Polycythaemia vera (PV). I’ve never known anything as uncomfortable as the infection, and I’ve broken bones and had a heart attack! So yes, I’d say we’re pretty marvellous adaptable creatures that are able to moderate how we perceive our pain.

Not noticed having more leg cramps than usual since diagnosis though, but then I’ve had them regardless over the years, especially after sitting on the floor. Maybe they’ve been a sign of my Polycythaemia vera (PV) all these years?! I’ve taken daily aspirin for over a decade so I hope that’s helped lessen the cramps along with its blood-thinning. Interesting link though :face_with_monocle:

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Hi Duncan, welcome to the forum. I have another Myeloproliferative neoplasms (MPN), essential thrombocythemia, caused by a JAK2 mutation and was also classed as young when I got diagnosed (43). I am nearly two years since diagnosis and still generally feeling well. I have the added complication of peri-menopause thrown into the mix now so difficult to tell if my (minor) symptoms are related to Essential thrombocythemia (ET) or that. If it is any comfort, I have an aunt (blood relative) who was diagnosed with Polycythaemia vera (PV) at a similar age to me and she is now in her 70s and still fit and healthy so that certainly inspires me. She has had some periods with some complications but certainly in the 30 odd years she has had Polycythaemia vera (PV) she has generally kept well. My Essential thrombocythemia (ET) is currently quite well under control, although I have an appointment next week to check so can never be certain. This forum and website it a great place for information and support. Look after yourself!

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Aw hello there @ljs, so lovely to read your comment. So you’re another young survivor! Welcome to you too, I hope you find the forum as helpful as I do.

Really sorry to read that you’ve also been diagnosed with an Myeloproliferative neoplasms (MPN), but you sound like you have such a great mindset about it all. I really am finding that reducing stress helps tolerate the worst of my Polycythaemia vera (PV), namely the fatigue. Don’t know about you but I went through a whole bunch of other side effects after starting hydroxyurea but that’s all settled down now as my body got used to the chemotherapy. Still weirds me out thinking I’m ingesting chemotherapy every day!

It really is reassuring about your aunt living so well with Polycythaemia vera (PV) for so long. Hello to your aunt! There’s a few lovely folks on here who have lived similarly with MPNs for many years and it’s great to hear how they’re doing and what helps them. Like you, I also have a blood relative with an Myeloproliferative neoplasms (MPN). I’ve been told these sorts of occurrences in families are not hereditary, but perhaps more environmental if you’ve lived in a similar place around carcinogens. My personal non-medical opinion is that epigenetic trauma can also pass down changes on a genetic level which can appear later in life, emerging as various health issues, perhaps even these MPNs.

So glad your Essential thrombocythemia (ET) is behaving, such great news. I’m sorry to read of you experiencing peri-menopause though, that’s got to be a whole other bunch of unpredictability to tolerate! I’ve got a couple of dear friends going through it and I really feel for you.

I’ll keep my fingers crossed for your tests next week @ljs, please let us know how they go.

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Hi @ljs a great big welcome to our forum.
We certainly are complex beings which makes it very difficult for the medical profession…
I am so glad that you have an aunt, having lived with a similar diagnosis, that inspires you.
I still get nervous before, during and after all tests, results and appointments and I was diagnosed with another blood cancer 20 yrs ago, I think it is natural.
Please do let us know how you get on, keep on posting and look after yourself

Thanks for your well wishes @Duncan and @Erica. I’m in a good place about it all at the moment. My symptoms are pretty minimal at the moment, so long may that continue. @Duncan I did also feel a bit strange about taking Hydrocarbamide but apart from feeling sick the first few weeks I haven’t really felt much different. Fatigue has definitely been an issue when my levels have been higher but for now I am feeling good.

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