Hey there folks. After testing positive for the JAK2 gene mutation I had my first and hopefully only bone marrow aspiration done recently and got a diagnosis of polycythaemia vera last week. Feeling understandably shocked that I have blood cancer as I don’t have any particular symptoms. My haematologist considers me “young” and yet this diagnosis makes me feel like suddenly I’ve entered a different, doomier final stage of life that curtails all the rest of the stuff I want to achieve. Clearly I’m feeling pretty existential right now! Wondering if there are other Polycythaemia vera (PV)/MPN survivors here, “young” or otherwise, with any pearls of wisdom you’d like to share?
I don’t have any proper suggestion, you need to concern experience person and maintain positive mindset.
Hi @Duncan welcome to our forum even though I don’t expect you ever envisioned being part of it.
I have another blood cancer and was diagnosed 19 yrs ago and a recent birthday was my best ever.
I was certainly in shock when I was first diagnosed I can replay the day as if it were yesterday with me sort of looking down on the scene.
I then felt in a surreal bubble for ages with the world going on around me.
My survival rate was 5-10 years and I am still here getting up to mischief.
My diagnosis gave me the opportunity to look at my life and what did I want to do and with whom. Before I went through life on autopilot and was more materialistic, now I realise the best things in life are usually free, like friends and family are priceless.
As you say you do not have any particular symptoms you don’t have to change your lifestyle, perhaps my pearl , for what it is worth, is that I have learnt is that all anybody has in life is the here and now.
Look after and be kind to yourself I think shock really plays havoc with our thoughts and emotions
Please keep posting
Hi @Joycecooley welcome to our forum.
I look forward to hearing more about you.
Really look after yourself and keep posting.
Thank you so much for updating us. I can imagine you are feeling all sorts of things right now and I’m certain other forum members within will be able to share their own experiences with you rather than my own knowledge around this.
Peer support is so important and in case it is of any help alongside our our wonderful forum it may also be worthwhile reaching out to also seek support from if you want to understand others experiences - MPN Voice – mpnvoice.org.uk
In saying that should you have any other questions or do just wish to talk things through, we are very much here for you- 0808 2080 888.
Take Care, Lauran
Hi @Erica thank you so much for your kind, empathetic response. I’m so sorry to read that you also have to live with something like this—it seems you are doing something right to have been diagnosed so long ago and yet be here to offer such wise advice. Thank you for being here! I agree—living in the here and now definitely helps. I guess my main concerns are medicine-related as I’ve been prescribed daily hydroxyurea on top off the daily aspirin I already take. A daily chemotherapy pill! It’s like something from Star Trek! Clearly I have a steep learning curve ahead to try to modernise my understanding of treatments and prognoses. Thank you again for your kind words, Erica, I wish you well in return.
Hi @LauranBloodCancerUK thank you so much for your kind response. Joining here is part of my push to reach out for peer support, despite usually being very introverted and hating social media! Aside from personal therapy and the support of my family doctor and haematologist, I’ve also joined an online blood cancer support group run by a therapist, admittedly partly so my husband has a place to talk through how he’s processing all this as someone who lost a parent to cancer. The group will hopefully also help me get my head around what feels like a death sentence but might not actually shorten my life at all. It’s a very precarious balance to be feeling like I have so much life left and yet maybe it’ll suddenly end! So my main symptom right now is anxiety at all the unpredictable aspects of this blood disorder. I am a keen hiker and am not embarrassed to acknowledge just how incredibly helpful getting out into nature is for me, forest-bathing and all. I hope it continues to be so healing as I hike my way through this blood cancer. Thank you, Lauran.
Ha yes, googling can lead down so many ill-informed and flat-out misinformed rabbit holes! I tend to read only official health information using my science background to avoid the kinds of websites and research not written by experts. Although it’s an American site, I’m finding LLS really helpful, whilst the NHS weirdly doesn’t even seem to have dedicated information about blood cancers. Does the NHS not consider MPNs as blood cancer like other medical experts?! So weird. Anyway, I hope you live long and prosper too, @Erica !
Hope you’re doing ok and well done for finding us and posting.
I was diagnosed with Polycythaemia vera (PV) under three years ago and still regard myself as pretty young.
I can totally empathise how you’re feeling as I was really lost and confusion with no where to find the answers to all my major and minor questions. This forum and its people helped me loads and I really wouldn’t be in the place I am now without them.
You’ll see I’ve posted loads about Polycythaemia vera (PV) here or given my two pence worth. Understanding the condition is really important both your condition and dealing with the label of having blood cancer. The charity has great information about dealing and managing with both.
Alongside that, I’m happy to buddy with you through this. I’m happy to answer any questions or concerns you have as during my time I’m been through a lot but happy to share my experiences if it helps you going forward.
Take it easy buddy. You’re not alone with this
Thank you @Joycecooley , wise advice indeed! If only keeping a positive mindset was as easy as, say, breathing! I’m aiming for trying to keep a realistic mindset and will see where I go from there.
Hi @Duncan our forum is full of supportive peer support.
I was also not a social media person and kept my thoughts and feelings to myself, but now I realise this forum is the one place that I can really say how it is for me.
My husband buries his head in the sand.
I believe since my diagnosis that my emotions and thoughts are all over the place and on high alert.
I find getting out into nature is so important, it sets me up for the day, I am a walker, not a hiker, and definitely not a forest bather.!!
Keep enjoying your nature, we are so lucky to have it and for me it’s free.
Hey there @Rammie18 , such wise and supportive advice, thank you so much. I’m really sorry to read that you also got this diagnosis, and during the pandemic no less—that must have been extra grim. Wow I can’t even begin to imagine how tough that was with everything being shut down. You’re so right about wondering where to find answers. It seems that I had quite a fast process of diagnosis relative to others I’ve read about, all in under a month, which has definitely added to the emotional whiplash from the shock of it all. While I find my way around this site I’ll definitely look through your posts, so thank you so much for introducing yourself as a fellow polycythaemia vera survivor and offering your support. I really appreciate it, @Rammie18 . Hope you’re doing well despite that pesky Polycythaemia vera (PV)!
Yeah I’ve decided not to tell my family about my condition which has allowed me to go at this at my own pace! I have a great gp and my medical team at the hospital and in fact my hospital have always been fantastic when ever I’ve called upon them.
Bar the itching at times, I’m doing fine and I’ve definitely come a long way in thinking this is not a total disaster diagnosis. I’m mentally and emotionally so much stronger which is often half the battle.
Obviously everyone journey and story is destined to be different but if you ever want to chat and escape reality to discuss your diagnosis I’m happy to trade details to gain a personal perspective of short and medium term prognosis
Oh @Erica you’re already forest-bathing if you go out specifically to be mindful in nature. Going out hiking, preferably somewhere remote away from the sound of roads, can make me feel so in tune with my body. No matter how exhausting the hike, my mind is clearer and helps me sleep and lifts my mood. I love that in Japan and even some progressive parts of the US forest-bathing is prescribed by doctors—imagine that happening in the UK?! A sick note to go and heal in nature, now that would be amazing treatment!
It really is about finding one’s own pace, isn’t it? I’m glad you have great medics supporting you, @Rammie18. Sorry to hear you have the itching side effect. Has anything topical helped with that? I wonder how supportive your family might be if you shared with them? I chose to tell mine as soon as I got a diagnosis for a few reasons, but mostly because one of my siblings somehow also found the JAK2 mutation this year after a terrifying heart-related incident and has since been diagnosed with an MPN. Although from what I understand the JAK2 mutation is not meant to be hereditary, having a blood relative with such a similarly rare disorder made me want to warn my other family members who might have encountered the same potential environmental cause so they can get tested too. So far, only my dad has responded and is being tested for JAK2. It’s been tough not having any support or even acknowledgement from my family, so I can understand why you might be hesitant to tell yours. I can also understand how any mention of the big C can freak people out and maybe make them keep their heads down, avoidantly. So instead I’ve cautiously let trusted friends into this new challenge in my life while I try to figure it out for myself in real time.
Yeah I didn’t need a biopsy thankfully as during the early days I was kinda expecting one. But to my knowledge believe I’m jak2 positive whether they gathered that via blood tests?!
Prior to my diagnosis I was donating blood regularly and was heavily anaemic which really suppressed the condition until it came as a last diagnosis.
You’ll read everywhere that iron or iron supplements is a huge no no when you have Polycythaemia vera (PV) but it’s often the base of all the symptoms I suffer so will my Haemotologist support and guidance as well as being good at monitoring and reporting issues I get an iron transfusion which really does bring me back to normal.
If your mind is concerned, unlike other cancers once you understand your body and all the details of your regular blood tests it seems to me as a very manageable cancer (touchwood) than you can carry on as normal and fulfil life to the fullest. I saw you like hiking and outdoors which is extremely recommended so long as you’re not alone, phone charged, and knowing what’s right and wrong, I don’t think you’ll be cancelling any hikes. Just maybe not put too much pressure on the quickest times or furthest treks. I don’t mind working out just not in this bloody heat. I feel my house is built on the equator
And you are right about telling your family regarding their health and getting checked. But for me the gains of not telling outweighs telling them. I’m sure there will be a time when I do… just not yet!
So interesting how donating your blood masked a blood disorder. I have a lot to learn. Were you not told your blood was tested for JAK2? It’s funny what does and does not get handed over by our doctors! My blood got tested because I’d told my doctor about my sibling’s JAK2 and essential thrombosis diagnoses. It can be a strong indicator of an MPN but there still needs to be the aspiration (not too aspirational, I would say!) and other diagnostic tests done to confirm it as an MPN, added to any symptoms you already have. I’m feeling a real sense of survivor’s guilt as I realise I’ve had it so easy compared to many folks on here, including you @Rammie18. Starting my hydroxyurea 500 mg tonight so we’ll see how my body responds to that. I already take a daily aspirin and other heart medicine so I’m used to how I can feel with those, namely slightly dizzy at moments in the evening. I’m trying not to read too much about the listed potential side effects of hydroxyurea as that always freaks me out. Instead I’ll find an article or few written by specialist doctors and get pacified through boredom by its dry medical jargon. Actually I’ll have a read on here to see reactions other people have had to taking it. Then I’ll plan tomorrow’s hike!
During the easy stages and after the first couple of times you do anything, just have an air of caution. Taking your meds is really important and allowing you body to adjust and cope is also equally important.
One thing to note with hydroxy is depending on how you cope you may find your dosage or frequency of taking them vastly increase. This is because they want to tease the medication into into observe and common or unusual side effects. There is always an individual optimum dosage for YOU and it’s about finding it slowly to get you to normal levels as safely as possible. Also with any medication your will always try and resist it so if initially you feel rubbish it’s a bit like feeding a small kid vegetables. Perseverance is key and keep reporting any abnormal feeling to your med team or least write them down so you can bring them up in your next appointment.
There are a lot of people taking hydroxy on here! I’m on another form of treatment.
That’s great advice, thank you @Rammie18. I have PTSD so have to sort of trick myself into not living so cautiously by getting out and about or else I’ll just get lost in agoraphobic thinking at home. So far, so good with the hydoxyurea. I did notice my tummy gurgling weirdly upon digesting it, and I had some amusing wind after, but thankfully no other side effects. Maybe tiny pinpricks of almost ticklish spots on my skin, but that just felt like when a loose hair brushes past your skin, or maybe a bit like gently poking a sewing needle onto your skin. Each of those various pinprick sensations passed after nanoseconds and would probably have been unnoticeable if I wasn’t being hypervigilant about medicine reactions! Today I kind of expected my digestion and morning ablution to be affected but that passed uneventfully. Feeling tired but then my sleep has been pretty random recently, wonder why?! Taking all this as a positive early sign which I hope will continue, although I’m mindful of how it might change over time as my body adapts to the medicine. Just off up to the forest on the ridge nearby with my dog for a gentle stroll as I need some vitamin D and fresh air!