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 
But I know that THIS IS NOT ME! So I took a deep breath, meditate for 10-15 minutes, and I am good 
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 
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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
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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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Hello folks, hope this finds you well.
Been a bit quiet recently after being bombarded by multiple bereavements. Still feeling raw but was missing it here so I’m poking my head back out.
Hard to believe but it’s already been a year since I was diagnosed with polycythaemia vera. Where has the time gone?! Much of it to worry, to be honest. Lots of reading too. I understand a bit better now just how multifarious our blood cancers can be, with such a variety of symptoms (if at all), treatments, prognoses, even whether there’s any kind of potential for remission. It is bonkers to me that I’m walking around with this chronic form of cancer and feel generally fine about it!
Humbly I am having to admit to myself that from this great shock has sprung a surprising sense of resilience. Or perhaps recognising I was already resilient?
Acceptance of my diagnosis has helped me come to tolerate taking daily chemotherapy and other aspects of treatment. Medical appointments which would have frightened or grossed me out in the before-times now seem like appointments to socialise with experts. I even, dare I say it, like my haematologist and can imagine trusting his judgment for years to come.
I feel like I’m learning loads which I unashamedly love to do, at least to defend against an atrophying mind. Being able to talk with my specialists with some modicum of mutual understanding helps me feel like I’m staying on top of all this.
Having lost 2 beloved family members in quick succession would have rolled me over previously, but these days I seem to be like a canoe righting itself after each emotional wave, obscuring my tears with a sense that I can possibly deal with anything. Grief still sucks but I now trust that it will pass.
Strange to be in this optimistic place so soon after diagnosis. Perhaps this is common with us, a kind of post-traumatic growth? My ongoing therapy continues to help pick apart the trauma from the experiences. Expressive pastimes are helping get a lot out, and my other half basically giving me a pass from domestic chores when I need it so I have more energy for doing artsy stuff.
But I know that joining this forum was the best decision I could have made for my mental health. Finding others here who have shared wisdom regarding these cancers has been invaluable, I’m so grateful to you.
So thank you to those who have imparted your wisdom. Just knowing I’m not alone with this bloody cancer can feel helpful, although I continue to wish that none of us had to live with them at all. Thank goodness for the forum, it’s like elders passing down vital information and I try to take it in and pass it on.
Here’s to many more years! Oh and some cures would be nice 
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Oh @Duncan I hesitate to use the word journey, but you really show the process that you have gone through since your diagnosis a year ago…
I am really sorry to hear about your bereavements, I am not surprised that you are still feeling raw. grief does suck, and you have had more than one and it is an individual process that takes time…
I often think our diagnosis is like a lot of bereavements perceived and real.
Looking back I think my actual diagnosis was definitely traumatic and 20 yrs on I can still replay the day so vividly.
Your therapy and expressive pastimes sound good to me.
Anyway perhaps it is a time for you to really look after yourself as you are with other forum members
Be ever so kind to yourself and give yourself time.
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Aww @Erica, I knew you’d say something supportive and empathetic, like you always do. Thank you so much.
Thank you too for sharing your continued wisdom and unconditionally supporting us all here—I always hope that you feel as supported in return!
I still remember your first message welcoming me to the forum so clearly, and it continues to feel very comforting knowing you’re here looking after us.
Totally agree about these diagnoses being like a bereavement, of our pre-cancerous selves perhaps, or the blissful ignorance that filled our lives before.
It really is a process coming to terms with all this on top of other real life stuff, so thank goodness we have a forum in which to figure it out!
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@Duncan ever thought it might be the tofu you insist on eating, changing your body in to a elasticated blob of bounciness? 
Like you, nearly a year of dealing with the Polycythaemia vera (PV), dance, fall outs from life and love, car crashes and lives lost, plus learning to live a life where our “constant cancer” is not constant and is like a faulty signal GPS and prone to possibly veering off course and down some interesting off road routes.
After a conversation with a health pro, he said that he has found people with certain illnesses develop an almost zen master approach to life, Myeloproliferative neoplasms (MPN) fell into that bracket.
Reading above, it seems your nature walks are your inner Buddha jiving waking into the future
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Ha ha ha thank you @clickinhistory, knew you’d have something pithy to say… about tofu! I was going to share a snap I took of some recent vegan fish and chips but didn’t want to make you feel ill 
Isn’t it bonkers how quickly time passes and carries on regardless of our diagnoses and dealing with them?! Love that analogy—it really does feel like our “constant cancers” are trying to send us off course. Good thing I love reading maps and adapting on the fly…
Interesting what you say about developing a zen-like approach with illnesses like these. I’m definitely leaning on my non-religious but Taoism-adjacent methods of going with the flow more. The I Ching has never been more helpful! Easier said than done but finding harmony in everyday moments helps a lot. Definitely finding the outdoors even more like its own form of therapy these days, no matter how far I hike. Art-making for myself, including writing, and seeking comfort in small pleasures is a work in progress but I’m making time for that at least, more than even when I studied art. Feels good to express myself, which I’m sure you know!
I hope you’re finding a kind of relative peace as you reach your own anniversaries too, dear @clickinhistory. Thank you so much for your support this year!
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@Duncan just for you, an insight into tofu quality control practises https://www.youtube.com/watch?v=brDNq5KqUNo
I guess you will be familiar with this quotation then, "The highest good is like water. Water benefits ten thousand beings, Yet it does not contend. Nothing under Heaven is as soft and yielding as water. Yet in attacking the firm and strong, Nothing is better than water.”
I think from a now western culture, looking across at the tradition of Zen or Dao is looking back into our more lost ancient roots when we were more part of the land, rather than trying to impose ourselves upon it.
The language of battle against the language of dance. As the saying goes, many illnesses a short life, a single illness, a long life. One of those sayings that seem so simple and yet so complex in it’s understanding of how to live a life.
I know that art and walking in nature is a wonderful counter balance to the controlled boxing of medicines roll in our life, the many parts taken apart and working out how it fits as a whole, like a single feather does not make a bird fly, it takes a combination of many types of feathers within a whole to create flight.
As dancers within our own journey with this cancer within us, we have a choice to balance the effects of cancer and outside intervention against the flow of how we live our lives.
If it was easy, then where would be the fun and creativity?
A friend once said that cancer had given them this amazing gift of new eyes, that seeing what people take for granted, in new light and shadow. That in the midst of the pain, a single mote of dust dancing in the sunlight, a gentle touch of skin on skin, the sensation of water on a parched mouth allowed them to interact and feel the world in a more focused and heightened way.
This past year as given me a gift of refocusing on life, to distil all that I once was, what I lost to the years of undiagnosed cancer, the impacts of loss in physical and emotional terms, to deal with the practicalities of outcomes and then to refine what it means to be me.
I now have two shadows walking with me, my own and my inner twin of Polycythaemia vera (PV), the weight of their shadows is in my own mind and emotions, sometimes I know they will be mountains and sometimes they will disappear, but cancer has reminded me to be like a child again in the way we see the wonder of the world, how we would dance and play with our own shadows in the sun, talked to them when it rained about the puddles we would explore when the sun shone again.
Like you, I feel this in my art, my story telling and the way we interact with others.
It is the very small details that matter, because they are the parts that create the whole.
This is a photograph of a white inner feather caught in blades of new growth grass, not touching the earth yet and still flying in it’s own mind. Loved the way it looked like a mystical creature with a sword or pole, dancing in the nothingness.
The philosophy of cancer and the zen of dance in a single image
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Beautiful image @clickinhistory and lovely sentiments too, thank you. It really is a gift to be able to refocus on life’s pleasures at a time when morbid fixations might make more sense!
Pre-diagnosis I took for granted my ability to go outside, find space to reflect, or to even feel like I deserved a simple treat.
Speaking of, today in this moment I’m very much enjoying the privilege of being alive, sitting outside one of my favourite cafés in dappled shade, finding beauty under this quiet sun. Bliss!
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@Duncan the cafe has sent us a video of you playing with your food or a 1000 better uses for tofu as it is better known https://www.youtube.com/watch?v=tVK-pEZLlZo
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An update. The bone marrow results were as good as can be hoped. I’ve been on hydroxycarbamide for two months now and am tolerating it very well. The dose has been upped twice and still fine (fingers crossed). A little extra fatigue but tolerable.
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Hi Duncan, so sorry to read about your multiple bereavements.
Glad you like your consultant. I’m sure that helps.
It’s great to have a place like this to chat.
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Hey there @Lucky, such great news about your BMB! I hope you celebrated. Also really glad the hydroxyurea is agreeing with you, that’s excellent news. As you’ve had a little extra fatigue since starting it, hopefully that’ll be the extent of it and the fatigue may even fade more. I’ll keep my fingers crossed!
Thank you for your condolences. I’m feeling a few weeks removed from my losses and more able to reminisce fondly now. Still so utterly gutting to lose loved ones while here I am bumbling along with my array of diagnoses.
Indeed, having a communicative haematologist and the forum with its lovely members is super helpful, and I can’t ever say enough good things about having therapy! If only it was more easily available. Imagine blood cancer treatment that typically included personal therapy for the first few months after diagnosis?!
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Hi Duncan,
I was indeed very pleased at the bone marrow result, having had undiagnosed Polycythaemia vera (PV) for a long time it was a worry. Unfortunately I wrote too soon about tolerating hydroxycarbamide well; the recently upped dose (two days a week) seems to be causing a lot of skin problems.
Fortunately I don’t need therapy for Polycythaemia vera (PV) but as the name suggests - I’m Lucky!
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