Hi,
I have been having monthly Venesection, and have had my 6 monthly call with my consultant.
She has told me she would like me to move onto taking Hydroxycarbamide and when I start I stop having Venesections.
Is anyone else on this medication, anything I need to be aware of? As always change worries me, hence this message.
Pete
Hi @PeterGadsby,
Completely understandable that a change in treatment stirs up some anxiety. Moving from venesection to hydroxycarbamide is a well-established step in managing Polycythaemia Vera, and lots of people on the forum have been exactly where you are now.
We have a good overview of how it works and what to expect on our Polycythaemia Vera treatment page and I hope you find it’s worth a read before you start. I’d also like to highlight the ‘Related’ topics at the bottom of this thread, which can link you to other, previous threads that might be relevant, for example the Hydroxycarbamide and venesection thread and this thread here as well.
I’m also tagging in a few community members who might be able to share their own experience of hydroxycarbamide - @Adw265, @Rammie18, @Duncan, @Maire, @Rose75. There’s no pressure at all, but if any of you have a moment and feel up to it, I know Pete wouldbenefit from your insight.
Take care,
Ceri - Blood Cancer UK Support Services
@PeterGadsby @Ceri_BloodCancerUK Hey Peter, I have been on the Hydroxycarbamide from right after my diagnosis of Essential thrombocythemia ('ET') (Essential Thrombocythemia) in the fall of 2025. I have not really had any difficulties with this medication. The big issue is that the hematologist I see wants frequent blood tests–they are very thorough, not just looking at platelets, since things like red blood cells can also be affected. In my experience the team was very concerned about finding the right dose, finding the dose that lowers the platelets to within the target range, but doesn’t lower it too far. They have been very clever about this–for example for a while I was taking two 500 mg tablets of Hydroxyurea twice a day, then two in the morning then one in the evening, and for a while alternating two a day and one a day–now I am pretty well set with one in the morning and one in the evening. I have had some minor issues but I can’t really judge what is the Essential thrombocythemia ('ET') and what is the medicine. I’ve had fatigue but can’t really say that has changed with the dose. I’ve also had red splotches on my arms (purpura) but they are harmless, again no predictable relationship to the meds. This last week I had a bad nosebleed, I was able to handle it, but again not sure if the medication or Essential thrombocythemia ('ET') is the cause.
I’ll also note, I use two pill planners–one for the morning that I put by the sink, the other for evening on my desktop next to my computer screen. That way I don’t need to remember changes from day to day, or remember changes, I stack up the week and can’t miss seeing if I took it for that day and time. That has been very helpful when they have adjusted the dosage and timing.
Hope this is helpful, for me it’s much more palatable to take a pill instead of getting venesection!
Bill
Thanks Bill that is very helpful & makes me feel a bit better, for me at the moment it’s the fear of the unknown (for me) & what you have written helps to make me feel much better.
Thanks
Pete
Hello again @PeterGadsby, glad to read you’re still getting on well. Sounds positive that your consultant is suggesting stopping the phlebotomies.
I’ve taken daily hydroxyurea since diagnosis with Polycythaemia vera ('PV') 3 years ago and I understand your concerns. I found the idea of taking chemotherapy in capsule form very sci-fi at first—there’s a daily medicine for blood cancer?! I also had a lot of questions about taking chemotherapy as it’s not portrayed very positively in public, is it?
The medically listed potential issues with hydroxyurea really are concerning though from my non-medical understanding, so I think you’re wise to give it thought. Perhaps your consultant has mentioned the risk of hydroxyurea slightly increasing our chance of developing skin cancers, so we are told to be very careful in the sun wearing high SPF sun lotion and hats etc.
Hydroxyurea is a slight risk to our sexual partners and can affect procreation so that is worth bearing in mind.
I know of another forum member whose hair thinned while taking hydroxyurea, although they were able to change to different medicines with similar benefits but without the hair loss.
My worst side effect of all this Polycythaemia vera ('PV') stuff was definitely nasty disabling fatigue after starting the hydroxyurea which lasted for about 3 months. Now I can gauge my energy levels better and not overdo it to the point of fatigue, and my body got used to the hydroxyurea. Exercise and keeping active can help reduce the fatigue.
Something my haematologist tells me is that he wants to free me from phlebotomy to rely on the hydroxyurea alone to manage my Polycythaemia vera ('PV'). Over time each session of phlebotomy removes all blood cells, not only the ones being overproduced by the gene mutation, which can affect our immunity and can bring on anaemia. My hydroxyurea dosage was tweaked until I no longer needed phlebotomy, and I haven’t had it since last September.
I’m sure that’s more than enough to be thinking about for now, but I would urge you to check out the links dear @Ceri_BloodCancerUK shared above. You can look around the forum using the search box at the top too, and Related Topics below.
Hope that helps a little Pete, do let us know what you decide.
Thanks Duncan, that really does help.
Hi @PeterGadsby
thanks for posting and apologies being late in replying
great advice and experience summary from @ProfessorJAK and @Duncan
Like @Duncan i too was on hydroxycarbamide for about a year, and when I knew my specialist was moving me onto it, I too was extremely cautious and anxious about it. The possible side effects and precautions and thinking about the future and starting medication with the label of chemotherapy really brought it home that I had cancer.
However, I’d there is anything I’ve realised while being diagnosed is everyone is different and everyone’s experience is different too..
hydroxycarbamide is the most used and used over a prolonged time with a vast of amount of data that it’s a valid course of treatment to use. Being on it can open the doors to newer treatment as from my own experience I could only be on my current treatment if I’d been on hydroxy for a while.
dosage starts low to see how you react and if anything you’d probably expect the possible side effects during the first three months. If you get through this initial period unscathed, they will up your dosage to find the optimum amount. Upping dosage doesn’t mean it’s getting worse, like I said it’s about easing you onto the optimum dosage without any breakouts of side effects.
find comfort that there are lots of people doing absolutely managing things well and leading a somewhat normal life without any hinderance to the things you enjoy. Just keep in close contact with your medical team and gp.
I have recently started taking Hydroxycarbamide, in fact only 2 days ago, so far so good but probably too soon to say. After a crazy 3 weeks of dizziness, vomiting ended up in hospital for 1week. Waited 2 weeks for blood results to come through, appointment straight away. Then to be told I have had high platelets since 2017 which had not been picked up or addressed by my doctors. I have now been told at 58 I have Polycythaemia vera ('PV') and have been started on this medication immediately. I am still trying to process everything as it came out of the blue but I am hoping I am now on the right path.
Hi @Sez and welcome to the forum
I’m sorry to hear about your Polycythaemia vera ('PV') diagnosis.
Your diagnosis would come as a shock for sure and I’m sure you will be finding it hard to process everything at this stage.
The good news is that you have come on to the forum and will find very supportive people here.
@Duncan who is in the US is also living with Polycythaemia vera ('PV') and I’m sure he will be happy to share experiences and offer non clinical advice.
The @BloodCancerUK-SupportTeam is another great place to get advice from.
Hope that helps and take care
Hello there @Sez, welcome to the forum at this understandably confusing time. Thanks @DuncanB, very thoughtful of you.
I’m so sorry to read of you being hospitalised and then that diagnosis with Polycythaemia vera ('PV'), really is a shock when a diagnosis lands out of nowhere. For it to be Polycythaemia vera ('PV'), well, it’s a lot isn’t it?
I really empathise as my own diagnosis with Polycythaemia vera ('PV') was very similar, kind of the steepest learning curve I’ve ever found myself on! The good news is yours was caught as I’m sure you’ve heard about the clotting risks with Polycythaemia vera ('PV') and related Myeloproliferative neoplasms ('MPN').
Really glad to hear you’re settling into the hydroxyurea treatment, I take that too. Mine initially caused really horrible cancer-related fatigue (CRF) and got me down but this gradually lifted after about 3 months. Thank goodness!!!
For what it’s worth, I now realise I had a separate but concurrent chronic illness which was also likely affecting my energy/fatigue so let’s keep our fingers crossed you’ll not get nasty fatigue!
I’ll share the great Blood Cancer UK research about Polycythaemia vera ('PV') here, do have a look if you haven’t already as it has loads of factoids and links to further information: What is polycythaemia vera (PV)? | Blood Cancer UK
I’d say at this early stage after diagnosis please be kind to yourself. There’s no need to understand it all right away, just take it in when you have the headspace for it. Maybe try not to use Dr Google if you can as it tends to offer just very generalised and often inaccurate results about Polycythaemia vera ('PV').
If you have loved ones you can share this with it can really help, and if they can attend appointments that is great with helping to take notes. Any questions for your specialist can be noted when they pop up, usually at inopportune moments for me, and you’ll soon have lots of stuff to speak to them about.
Don’t forget our nurses and especially our phlebotomists doing blood tests have amazing knowledge and I personally get lots of my best tips from them. If you’d like to speak with the Blood Cancer UK specialist nurses they can answer medical queries and offer all sorts of resources. Their free number is 0808 2080 888.
Please let us know if there’s anything you’d like some tips about and I’m sure we can find it around the forum or point you towards relevant resources. Keep us posted about how you get on @Sez, really glad you found the forum.
Thanks for posting @Sez .
Sound advice from @DuncanB and along with @Duncan I too have Polycythaemia vera ('PV') and was diagnosed at age of 38.
Being diagnosed with any form of cancer is always difficult physically, mentally and emotionally.. and though some take some relief it that their symptoms have a reason, it can affect you with some worrying thoughts.
A thing to note, is that Polycythaemia vera ('PV') though is not curable is manageable and once you’ve got through the initial stage, relate learning about it to how you are feeling, with being aware and a good supportive medical team you can carry on.
hydroxycarbamide is a form of chemotherapy and though the side effects are scary they are precautionary and everyone and their experiences are different. It’s one of the most tried and tested forms of medication and should it not get the effects it should with you will open up other Polycythaemia vera ('PV') treatments as some are only available if you’ve tried hydroxy.
there are plenty of us with Polycythaemia vera ('PV') and now along with you can be getting through this together.
Be sure to keep us updated on how you’re doing
Thank you for your kind and useful information. As you say it’s the initial shock of it and which takes time to progress. Time is the healer. I will keep you posted. Thanks again.
Hi @PeterGadsby. I was on Hydroxycarbamide for 11 years following a Thrombocythemia diagnosis and I had no side effects or reactions. I was able to continue a normal lifestyle.
That’s good to know, thank you.