I’ve been using this brilliant forum for information for the past few months but I’ve been feeling a bit like a stalker, so I thought it was high time I came out in the open and introduced myself.
I was diagnosed with Polycythaemia vera (PV) just under 2 weeks ago after 15 months of unusual blood results. I have regular infusions to treat inflammatory bowel disease and have blood tests just before each one. These have increasingly been showing high levels of white blood cells and platelets, both of which can be caused by my IBD. My gastroenterologists have been trying to work out why this has been happening and after ruling out all the possible gastro related things called in haematology. They ordered more blood tests including a JAK2 test so, having already done some research into high platelets, I could tell which way they were thinking. JAK2 came back positive at the start of April so, believing that my red blood cell levels were okay, I thought I probably had Essential thrombocythemia (ET) or MF. However, just to prove you should never try to self-diagnose, it turns out I actually have Polycythaemia vera (PV). Low iron and folate levels had been preventing the over-production of red blood cells and keeping my haematocrit down.
So what’s next? I’m over 60 and, together with the high platelets and white blood cells, that puts me in the high risk category. I have signed up for the Mithridate trial which gives me a 50/50 chance of receiving hydroxyurea or ruxolitinib. All experiences of these drugs will be welcome!
Thanks for all your contributions to this forum which have helped me cope so far with this diagnosis!
Hello there @JAKtoo, I wanted to welcome you to the forum, fellow Polycythaemia vera (PV) survivor!
It seems like you’re well underway with treatment and have a good idea of what you’re living with after that Polycythaemia vera (PV) diagnosis, but I just wanted to say I’m sorry you were diagnosed at all.
In 2023 I was diagnosed with the JAK2 gene mutation and then Polycythaemia vera (PV), so I can empathise with some of what you’re experiencing. I was fortunate not to have any symptoms of Polycythaemia vera (PV) before diagnosis so count myself very lucky.
I’m intrigued that you’re on a medicine trial. I’ve taken hydroxyurea daily since diagnosis and apart from horrible fatigue during the first few months my body has managed it well. I’m mostly back to my pre-diagnosis levels of activity, but I do have to be careful in the sun as my skin is photosensitive now and can get a bit prickly if I haven’t used enough high SPF sun lotion. Keeping hydrated is important too as the hydroxyurea dries my formerly oily skin out.
Perhaps that’s more than enough about me! I hope you are doing as well as can be expected since diagnosis, it can feel like such a big shock. You’ve already found the forum brilliant and I hope you continue to @JAKtoo, do please let us know how you get on with that trial.
Hi @JAKtoo a great big welcome to posting.
Your post shows what complex beings we are and that everything is interconnected.
You ask what next well that is a question for your medical teams.
I also have different medical teams and I ensure that I take responsibility for reminding each team about my other conditions.
I hope others will be able to share their experiences.
Please do keep posting how you are getting on and If you would like to speak to the Blood Cancer Support Nurses or the Clinical Trial Team please ring 0808 2080 888
Look after and be kind to yourself I reckon it is so important.
Hi Jaktoo, thanks for posting, it does help knowing you are not alone. I have never met anyone with Polycythaemia vera (PV) or any Myeloproliferative neoplasms (MPN) in real life.
I’m guessing I’m about the same age as you (I’m 63) and was diagnosed last summer. I have experience of taking hydroxy and ruxolitinib, which is best is for your body to decide, it’s not really a matter of choice.
To give the next bit of waffle some context, when diagnosed I had nearly all of the potential symptoms for Polycythaemia vera (PV).
I was initially prescribed the hydroxy and this brought my haemocrit down successfully and had a positive impact on my symptoms. However, after about five months I was still getting pain around the spleen area and I was still itching, not as much as before, but enough to cause me considerable discomfort. Like Duncan, I noticed no side effects because of the medication, other than fatigue, but I was exhausted before I started taking the hydroxy. I think this is our one shared symptom that we all appear to have.
As Christmas I changed to ruxolitinib. This has had a considerable positive impact for me and I’m much more comfortable and not as tired as I was . I still have some itching and I may have my dosage increased after my next check up but my heamatologist wanted to give my current dosage a little longer to work. As with the hydroxy I have noticed no side effects.
I do know the ruxolitinib is incredibly expensive but I’m no biochemist so I don’t know how they decide which drug to give you initially, but I suspect cost may play a role.
I was hydroxy for about a year but the side effects were more apparent than on my previous treatment which was interferon which I was doing really well on.
Ruxolitinib is only given if hydroxy isn’t effective or a patient doesn’t tolerated it.
Hydroxy is the most tried and tested form of treatment as it’s been around the longest and data shows it helps a lot of people. So don’t be downbeat if your specialist offers hydroxy first or interferon. Your specialist will know all about your levels and will recommended the best option to try first.
I’m now on ruxolitinib and doing well bar the weight gain but it the grand scheme of things it’s reacting well.
If there was one thing I wish I knew earlier in my diagnosis (coming up to 5years now) is a sign your condition is potentially getting worse is when the time period of having venesections gets smaller and smaller.
It’s also very normal during early stage diagnosis that you have a few over a short period of time to get your levels at a normal state before closer observations are made
Thank you so much for your reply. It’s largely been your level headed and informative posts which have kept me on an even keel with all this - particularly your consultant’s ‘you die with, not from Polycythaemia vera (PV)’ comments - so thank you very much for taking the time to support others through this forum.
Like you, I’ve not experienced any Polycythaemia vera (PV) symptoms that would have taken me to see a GP before diagnosis, so I am lucky that I have regular blood monitoring for my other conditions which picked it up. Who new that that pesky IBD would actually come in handy one day?!
I’m hoping it will be helpful to be part of the Mithridate trial (there’s information on it on the Cancer Research UK website if anyone’s interested), though it will be quite time consuming to begin with and I will need bone marrow biopsies which my consultant would not have normally done in my case. Trying not to think about those too much!
The trial is trying to show that ruxolitinib should be available as an initial treatment. How it works is that your consultant decides which initial treatment you should be on under the current system (hydroxy in my case) and the trial randomly allocates you to either that treatment or to ruxolitinib. As my consultant believes that, with my medical history, ruxolitinib is probably the best drug for me to ultimately be on, volunteering for the trial gives me a 50% chance of getting that straight away rather than having to wait to fail hydroxy first. A no brainer if you discount the biopsies!
So, for now, I’m mentally preparing myself for starting either hydroxy or ruxolitinib, hence asking for people’s experiences of each.
I’m pleased to hear you are almost back to your pre-diagnosis activity levels. As I’m currently well, the thought of taking medication which can make you feel less well seems kind of counter-intuitive. You just need to keep thinking of the big picture I suppose. I’m used to needing to take sun precautions, so that’s one thing fewer that I need to make adjustments for thankfully!
I’ll certainly keep everyone updated with news about the trial. Thanks again!
You are so right about things being interconnected, and you are right that we need to take responsibility for our own health. Things are not always as joined up as we would like, nor are we always treated holistically which is all understandable, but frustrating. Thankfully I seem to have good teams who are approachable, which makes all the difference.
Thanks for pointing out the Blood Cancer Nurses and the Clinical Trial Team, I’ll keep that number with my notes as it’s often useful to have another person to bounce things off.
Thanks for all you do on here and be kind to yourself too!
Aw I love that my haematologist’s advice is helpful for you too @JAKtoo! I remind myself of it whenever living with Polycythaemia vera (PV) gets a bit much, as I’m sure is familiar to you too. I’m really humbled to have been helpful, I really know how strange this diagnosis can feel.
In fact, it was dear @Erica and @Rammie18 who reached out to me first with invaluable support when I joined this forum. Hey there Rammie, glad to read you’re doing well. And I see you too dear @Pedro, also kindly sharing advice. This forum really is amazing, especially as Polycythaemia vera (PV) is considered so rare.
Although I’m not a doctor, I did dig into clinical research and attended some Myeloproliferative neoplasms (MPN)-related blood cancer conferences which indicate exactly what Rammie shared—that hydroxyurea and ruxolitinib have most beneficial outcomes for those of us with Polycythaemia vera (PV).
I think I’ve shared notes somewhere in the forum from conferences I’ve attended, let me know if you’re interested and I’ll find a link. I’d say either of those cytoreductive medicines you might take during the trial will be beneficial. Put it this way, I’d be content with either as my own treatment.
Just wanted to say, the bone marrow biopsies aren’t always horrible. I’ve read some horror stories around the forum, but mostly people seem to have only momentary discomfort and then that passes. I slightly dreaded mine but actually it was fine, not much worse than having a tooth extracted in terms of pain and aftermath. Definitely ask to be locally anaesthetised!
And I totally know what you mean about feeling well but expecting to feel less well when taking hydroxyurea. The way I try to tolerate it is to remind myself that prior to taking hydroxyurea I felt fine but actually the gene mutation was putting my body at enormous risk of clotting, possibly for years. Having already survived a severe heart attack caused by a clot I’d really rather not experience anything like that again, so I try to accept these chemotherapy side effects as a lesser evil than random risky clotting! I remind myself that other treatments are being tested and that within my lifetime there’ll be newer, less harsh treatments. Maybe even cures and/or remission.
So let’s keep our fingers crossed that scientists keep on discovering new treatments right?!
Oh and @Rammie18 I’m sorry to read that you’ve experienced unwanted weight gain. I’m not sure if it’s available where you are but I went on a bit of a quest to find out what was going on after noticing some physical changes myself. I had a bunch of hormonal tests which led to finding a brain tumour! It’s thankfully totally benign but explains the physical changes. Perhaps something similar might be affecting you, separate from the Polycythaemia vera (PV) and medication. Just a thought.
Many thanks for your reply and apologies for taking so long to come back to you.
No, I’d never heard of MPNs or Polycythaemia vera (PV) either, yet when I told my chiropractor (at a small practice in a small town) about my diagnosis she said she has another patient with Polycythaemia vera (PV)! Small world!
I’m just coming up to 62, so it looks as if we were both diagnosed around the same age.
That’s interesting to hear your experiences of both of the drugs that I may end up taking. Your experiences also seem to back up the findings of the MAJIC-Polycythaemia vera (PV) trial. Under normal circumstances I would definitely be starting hydroxycarbamide, but my consultant has put me forward for the Mithridate trial which is studying whether patients should have ruxolitinib as a first treatment and not have to fail something else before they can receive it. There’s a 50/50 chance of receiving either treatment. I’m keeping my fingers crossed that I will receive ruxolitinib but allocation is randomised and the computer has the final say, so I’m not building my hopes up too much.
I’m pleased to hear you have had no side effects for either drug and that ruxolitinib has made you more comfortable. Long may that continue!