Good Evening, back in October 2024 I left a message in this chat room after being diagnosed with an Myeloproliferative neoplasms (MPN), which was initially thought to be Essential thrombocythemia (ET). After further investigation more blood tests including a bone marrow biopsy. The haematology team at my local hospital, have confirmed I Definitely do not have Essential thrombocythemia (ET) but I do have Polycythaemia vera (PV). I also have the JAK2 gene which was diagnosed in October. My main symptom is horrendous itchy skin after a shower, along with fatigue, brain fog and occasional flushes and night sweats. A month ago I have a pint of blood drawn which did ease my symptoms for a few weeks. Next Tuesday I am going to return to oncology to have another pint of blood drawn and will start a course of chemo tables, (HC). My haematology consultant is hopeful that this will bring my bloods back into their normal range! (My platelets, red and white cell counts are all out of range). He has also said it will likely reduce/get rid of the symptoms associated with Polycythaemia vera (PV). He has also said if HC is not effective there are other alternatives chemo drugs. Has anyone been down this journey with Polycythaemia vera (PV). I would be really interested to hear from anyone else what there experiences were like when taking HC and just generally living with Polycythaemia vera (PV). It’s been such a journey for me over the past 3 years to get to this stage, and I am really hopeful this could be a turning point for me. I’m a 53 year old Male. Regards Andrew
Hi @Drewplymouth thanks for the update.
I hope others will be able to share their experiences.
It sounds to me as if you have had a lot of uncertainty over the last 4 mths and loads of symptoms, including horrendous itchy skin.
I note that you have an oncology appointment next Tuesday where you can ask any questions or concerns that you have, you have another pint of blood drawn and you are then starting on chemo tablets.
Please do let us know how you get on.
Really look after yourself.
Hi Drew, I hope things are going well. I was diagnosed with Polycythaemia vera (PV) in 2024 following investigations after collapsing in the street with polyglobulia. I too had tremendous itching, the websites that say patients may experience itching make me want to scream, I found/find it completely debilitating after a shower that I can barely dress myself so much so I stopped showering and used wet wipes and such.
Initially I too had a phlebotomy or two, following confirmation of my diagnosis I was put on Hydrea a hydroxy carbamide, this reduced my blood cells sufficiently but not all my symptoms though they did improve. When the dosage was reduced to a ’ therapeutic ’ level my blood count remained constant but my symptoms started to deteriorate.
The week before Christmas I changed to Jakafi, this has been a game changer. Within a week my symptoms improved dramatically. I used to itch tremendously pretty much all the time, I didn’t need to shower to bring it on, a change in temperature would do it. Now, after only a month I am itch free most of the time and the itchiness/pain after showering has reduced dramatically. I’m still not showering regularly though. I’m told by my haematologist that I will continue to improve and it will disappear. I have confidence it will happen, which I didn’t have on my previous medication.
I still get the random pains and sore joints, I still get tired but nothing like I used to be, my dizziness had reduced greatly but I still feel light headed from time to time, I don’t feel safe to drive for example.
But I am now optimistic about the future and that I will have one that is symptom free, they will find what works for you. Happy to share more if it may help.
Good luck and best wishes
Hi @Pedro thanks for updating us and really good news and what a brilliant way to start 2025.
Really look after yourself and please do keep posting
Hello again @Drewplymouth, so your diagnosis turned out to be Polycythaemia vera (PV). Welcome to the club no one would ever want to join! Sounds like we both have a JAK2 gene mutation, Polycythaemia vera (PV), and treatments of phlebotomy and hydroxyurea. Do you take daily aspirin to help thin your blood too?
I’m really so sorry to read that you have such itchy skin though, I really feel for you. Those other symptoms sound rubbish as well. I can’t speak for the itching, but my treatments brought down my platelets into the normal range pretty quickly which was a relief—according to my specialists, the higher our haematocrit, the thicker our blood, and thus the more at risk of clotting we can be. Hopefully your blood will thin quickly too, especially with those bloodlettings removing a pint each time.
So I’d say my treatments match yours and have helped me a lot. I get my blood tested once a month and then if my haematocrit is above 45 % I go in a couple of days later for phlebotomy and chats with my lovely nurses. I’m not a fan of needles, but have come to not mind the process of phlebotomy.
I won’t sugar-coat my experiences of hydroxyurea though. The first couple of months were particularly difficult as I had bone-deep disabling fatigue. I also had terrible chemo brain and found it hard to plan stuff as my thinking was so foggy. Thankfully this all faded after about 3 months. My hydroxyurea dose was increased slightly after I changed haematologist and again I developed strong fatigue but the chemo brain wasn’t so bad. It’s all settled down now a year and a half since diagnosis, and my energy levels have improved enough that I just had a long weekend away hiking and socialising and I’m not totally wiped out by it all like I would have been.
I read a meta-analysis of research about what can help energy levels when living with cancer and they show that exercise is really great. Seems so counterintuitive but getting our bodies moving can increase our energy even when feeling totally zonked out from fatigue. I kept hiking, and started up yoga too as slow forms of movement like yoga, tai chi and Pilates are shown to improve energy levels. Getting natural light into our eyes early in the day can help our energy too, according to that cancer-related fatigue research.
What also helped me was finally sorting out my terrible insomnia! I got a smart ring and after a few weeks of tracking my sleep and energy patterns it helped me to learn I am actually an early bird! I always thought I was more of a night owl. So I changed my sleep routine and now get enough deep and REM sleep which obviously helps my energy during the day. I’m even dreaming again, make of that what you will.
Hopefully my experiences might give you some confidence in your treatments. We’re all individuals obviously, but there does seem to be patterns in how our bodies react to the chemotherapy, namely fatigue. I’m hopeful your itchy skin will improve as you begin to maintain less and thinner blood via treatments. Maybe have a look around the forum as many of us with Myeloproliferative neoplasms (MPN) have or develop the dreaded itchy skin. I’ve read that cooler showers and milder emollient shower/bath products can help.
You might want to think about any plans to procreate if you haven’t already as hydroxyurea can affect our fertility, which my first, terrible haematologist didn’t bother to tell me. And like you say, there are indeed a few other medicines we can take if hydroxyrea doesn’t agree with us. There are a few ‘veteran’ Myeloproliferative neoplasms (MPN) survivors around the forum who took hydroxyurea for years and changed over to a different medicine, or vice versa.
Looking forward to hearing how you get on @Drewplymouth, fellow Polycythaemia vera (PV) survivor! Do please let us know how your treatments go.
Hello there @Pedro, welcome to the forum fellow Polycythaemia vera (PV) survivor. Seems to be a few of us recently diagnosed who are active on the forum so I’m glad you found it here. I’m really so sorry to read of your terrible itching, it sounds horrific. Thank goodness the Jakafi has helped so much and so quickly, and it’s great that your haematologist didn’t minimise the itching and was agreeable to you changing medicines in the first place.
Did your haematologist mention that your joint soreness might be gout? Apparently we can develop it with Polycythaemia vera (PV), just a thought. I get a bit dizzy in the evenings after taking my medicines, so I wonder if changing the time of day you take yours might help? Maybe check this with your specialists as with all things Polycythaemia vera (PV).
Lovely to read of your optimism @Pedro, long may it last! Do please keep posting as it’s super helpful to share our different and overlapping experiences of living with Polycythaemia vera (PV).
Hi Pedro,
I’m sorry to hear you have been suffering with the horrendous itch. Mine too is mainly post showering and where there is extreme temperature change or even from light exercise.
Before I was diagnosed with Polycythaemia vera (PV), when the cause of my itch was unknown I tried everything from, diet change to low histamine foods, changing my washing powder, herbal meds etc etc etc…… you name it I have tried it! I even went down the private dermatology route and was eventually diagnosed with chronic spontaneous urticaria, because of the severity of the itch and the effect it was having on my daily life with it effecting my mental health I qualified to go on an injection trial of omalizunab which suppresses histamine release in the body, which in turn sets off my horrendous itching.
I have seen some improvement over the past month, but it’s very slow progress and now I have the Polycythaemia vera (PV) diagnosis, and about to start on HC next week. Fingers crossed once my blood levels start to come down this will hopefully reduce the dreaded itch. I too stopped showering every day and went to wet wipes every other day just to get a break from the daily itch post showering.
Whilst the itch is just a symptom of Polycythaemia vera (PV), and not the main cause. The itching really gets you down and to hear your similar story, and the success treatment has given you with easing your itch gives me great hope it may also work for me.
Thank you for taking the time to reach out to me to share your story. I will most definitely keep you posted with my journey if that’s ok?
Kind regards
Andrew
Hi Duncan,
Thank you for taking the time to share your story and your experiences of the treatment. I now have hope that HC and further venesections will soon help to lower my blood counts and in turn lower my symptoms, (especially the dreaded itch).
Thanks also for being honest of your personal experiences with taking HC. I will definitely keep you posted of my progress if that’s ok with you?
Kind regards
Drew
Oh @Drewplymouth it’s an honour to offer any support or personal experiences if they help you, so do please keep us posted about how you get on as I’d love to know.
That itchy skin that we can be so prone to with Polycythaemia vera (PV) could do with more research into treatments, I’d say! I’m keeping my fingers crossed that yours reduces as your other treatments take effect.
Might be too early in the year but keep an eye out for blood cancer conferences, I believe MPN Voice hosts them around the UK. I’ve attended a couple of conferences and always come away with new information and personal tips from others living with Myeloproliferative neoplasms (MPN) also in attendance.
And if you haven’t already, look around the forum for others who have posted about itchy skin as it’s common enough that there might be some skincare tricks to try out.
Hi Andrew
We are here to help each other so write as much as you want when you want to.
As I have not introduced myself on the fórum I will give a bit more background information.
I am, well for the next few months, in my early sixties, and I live in Spain. Originally I too thought my itching was an allergy of some sort and had tried all sorts of things to try and work out what was going on. At one time I was told my inmune system could not react properly to changes in temperature. I tried various medications which had some mitigating effects. All antihistamínes of some sort.
Coincidentally i was discharged from the allergy clinic ( for not having an allergy) about the time i was first referred to my haematologist following my collapse on a street in Valencia ( if you are going to collapse in the street better in Valencia than in my hometown of St Helens, Valencia has the edge aesthetically) The rest, as they say, is history.
Strangely, though I knew I had cáncer of some sort for quite a while before my diagnosis was confirmes ( my Jak mutation was not were it normally is apparently) it was only at Christmas I really realised I had cancer and then looked for support and found this forum.
In my local hospital in Spain in the part of the hospital I go to for my tests and consultant appointments you have to wear a mask. I always did so as I wanted to ensure the people with cancer attending the clinic that needed protection got it and I must help provide it. For a reason I cannot explain it was only at that pre Christmas appointment that I realised I was one of those people with cancer. Our minds are strange and capricious things.
Anyway,here I am, telling strangers how I feel and feeling comfortable doing so, so thank you all for that and I hope my ramblings may be of use to someone other than myself.
Here’s to feeling better in 2025.
Best wishes
Pedro
Thanks @Pedro it is great to know you and more about you and you are very welcome.
I know you are aware this is a Blood Cancer UK forum so the diagnosis, treatment plans and medications might be different in Valencia.
I look forward to hearing more about you and really look after yourself.