Hello, my name is Máire and I live in SW England. In 2020 I was diagnosed with Polycythemia Vera (Jak2 positive). I’ve been doing well with occasional venesections and taking 75mg of aspirin daily, as well as 10mg amlodipine for hypertension. However my platelets and white blood cells have been creeping up over the last year and my haematologist now wants me to start taking Hydroxycarbamide. She also wants me to have a bone marrow biopsy to see the extent of scarring in my bone marrow. I don’t really think I have a choice about any of this as the alternative is the risk of a stroke. Nevertheless in order to psych myself up as I’m a bit of a wuss, I’d be interested to hear of anyone’s experiences taking Hydroxycarbamide: side effects, does it work etc. I’d also be grateful for anyone’s experience of the bone marrow biopsy which doesn’t sound like a fun day out. I’ve never met anyone else with Polycythaemia vera (PV) so I’d welcome any comments and observations from others who have it. Thanks for reading! Máirex
Hello there @Maire, welcome to the forum. I’m so sorry to read of your diagnosis with Polycythaemia vera (Polycythaemia vera (PV)) and can empathise as I too was diagnosed with Polycythaemia vera (Polycythaemia vera (PV)). It can be a right old pain, can’t it?!
I see you’ve lived with Polycythaemia vera (Polycythaemia vera (PV)) for a few years more than me and I bet you’ve got some great tips to share, but even as a relative newbie I do understand your concerns about taking hydroxycarbamide and having a bone marrow biopsy. I’ll share the great Blood Cancer UK information about Polycythaemia vera (Polycythaemia vera (PV)) in case you haven’t seen it: Polycythaemia vera (PV) | Blood Cancer UK
My first haematologist put me on hydroxyurea straight away after diagnosis as I was considered at high-risk of further clotting events, having had a heart attack years ago caused by a clot. From my non-medical understanding, if we have had a clotting event and/or are over 60 then we tend to be prescribed hydroxyurea or similar at diagnosis. Others, like you it sounds, can follow more of an active monitoring AKA watch and wait treatment, sometimes for many years.
I take daily hydroxyurea to disrupt my body’s overproduction of blood cells, and also take daily “baby” aspirin to thin my blood. I would say, from my experience of hydroxyurea, that it does definitely work at bringing down our blood cell numbers. My platelets have been in the Goldilocks range since starting hydroxyurea.
However, I experienced pretty disabling fatigue for about 3 months after starting hydroxyurea. I was very fortunate in not having any symptoms prior to diagnosis, so really noticed the effect of chemotherapy on my energy levels. It really got me down as I’m an active person, hiking and walking a lot, but I’m back to my pre-chemo energy levels now, 2 years later.
My first haematologist didn’t bother telling me about the potential risks in taking hydroxyurea which is a form of chemotherapy. It can increase our risk of developing skin cancer as it makes our skin photosensitive. So we must always be more careful in the sun—my skin goes fizzy if I’ve not put on enough sun lotion. It also dries out my skin generally so I’ve had to find a moisturising shower gel and moisturise my skin every day now or else I get rather ashen. One last thing but taking hydroxyurea is dangerous if you’re pregnant or attempting to be, so do bear that in mind. Again, my first haematologist didn’t bother telling me about risks to fertility.
I know others around the forum living with Polycythaemia vera (Polycythaemia vera (PV)) and other Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) have very different experiences of taking hydroxyurea, so maybe have a look around for fellow Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) survivors to see how they get on. The good news is that there’s a few other medicines like hydroxyurea we can take if it disagrees with us.
As for the bone marrow biopsy (BMB), well, again I was fortunate in having the procedure done with absolutely no issues at all. I’m also not a fan of gory stuff. No exaggeration, but I know others have had some painful horror stories having their BMBs. If you’re anaesthetised and the medic doing the operation is slow and steady then it should feel only as invasive as having a tooth pulled and wiggled out, if you know that sensation. It felt bruised for a few days in the area of my lower back where they went in to get the bone sample.
So, again, look around the forum to see how others got on! I wouldn’t want to have this procedure too often, but for me it was tolerable. A tip others have shared is that they request anaesthetic due to anxiety about potential pain, and this usually tips off the medic to be more careful. As they should be anyway, but still.
Hope that helps and isn’t too much information, Máire! Do please keep us posted about how you get on. There’s a lovely bunch of us Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN)) survivors around the forum so you’re no longer alone with this horrible diagnosis.
Hello,
I began taking Hydroxicarbamide in August 2023. As I had an unprovoked DVT, my consultant advised 500mg 6 days a week. (My Myeloproliferative neoplasms (MPN) is unclassified but my bone marrow biopsy showed characteristics of Essential thrombocythemia (ET)).
Since starting hydroxy, my symptoms have reduced considerably. I no longer suffer from occular migraines on the scale I once did. My energy levels have increased as my platelet count has reduced. I no longer feel nauseous. I will be honest, I was scared about taking this medication but realise that it is enabling me to function more fully. I think at first I may have felt more tired but that wore off within a week or so. My only downside is I occasionally get mouth ulcers but then I know it’s because I haven’t drunk enough water usually. It’s important to keep hydrated with this medication.
In my experience, the bone marrow biopsy was not too bad. Gas and air helped greatly! I was at work teaching the next day. I appreciate everyone’s path through this is different but hope sharing my experiences will help in some way.
Hello Duncan,
Thank you so much for the comprehensive reply, I really appreciate it. I was interested to read your experience of taking Hydroxycarbamide. I had heard somewhere that mouth ulcers can be a problem so it was useful to read your take that staying well hydrated is important. It was also good to know about the sensitivity to sunlight. I always stay well covered in strong sunshine as I burn easily, so again it’s very useful to know that could be an issue. Pregnancy isn’t relevant for me - I’m 68! I think I’ve done well to stay off hydroxywatsit in the last 5years, and I knew it would be necessary eventually. I have an appt with the haematology team next Tuesday to discuss it all and get my first prescription. Thanks for your comments about fatigue. I’m having an unbelievably busy time at the moment doing major home improvements as well as trying to get compensation for my adult son who has traumatic brain injury after he was hit by a car, so I’ll have to prioritise things and pace myself. Housework may be last on the list!
Thanks again for your message, it was very helpful.
All the best to you that you stay healthy and happy.
Mairex
Hi again Duncan,
Oops… I just realised it was Rose who spoke about mouth ulcers, not you. Doesn’t take much to confuse me these days.. apologies!
Hi Rose,
Many thanks for replying to my post asking for info about hydroxycarbamide. Your comments were very helpful, especially about mouth ulcers. I was interested to read that you were having ocular migraines. Not long after I was diagnosed with Polycythaemia vera (PV) I started having them, very frightening at first as I thought I was having a stroke. I must have had half a dozen over a few months and realised that I felt fine and it was just a visual disturbance, and on one occasion kept on teaching during one. Once I started having venesections they haven’t recurred. I assumed they were something to do with Polycythaemia vera (PV), but even the doctor didn’t know.
Like you, I find the thought of this medication scary. I don’t even like taking paracetamol. It’s reassuring to hear that for you it’s been helpful. I’ll be getting my first prescription next week and fingers crossed I’ll cope well with it.
Thanks so much for your message.
Wishing you well,
Máirex
Hello again,
I completely understand as I also thought I was having a stroke when I first experienced an occular migraine about 8 years ago. Now I try not to panic as I know it will pass. I took other medication from the GP to control the migraines until the DVT in 2022 led to my Myeloproliferative neoplasms (MPN) diagnosis. However, a cold ice pack on my neck has always been the best help when they occur. Now I occasionally get the migraines if I’ve been overdoing it. It’s very rare though
I do hope that Hydroxicarbamide helps you as it has me.
Ha no need for any apologies @Maire, I know how my brain can get a bit foggy these days, or at least that’s my excuse! It really made my day to have offered you any useful experiences. I too think you’ve done well to avoid hydroxyurea, how did you get your doctors to delay starting it?! I was given the impression I had to start right away, but I would have delayed things if I’d had a more open, communicative haematologist. My current one is great though and has helped me sort out so much other stuff, like my lifelong insomnia and skin dryness.
I think you’re wise to pace yourself as cancer-related fatigue (CRF) is so common that it has its own acronym. Something another dear forum member shared to tolerate their fatigue was to rest when it comes on and then to resume activity afterwards or on another day. At its worst, my fatigue was tolerable if I took breaks. I’ve also discovered afternoon siestas really help boost my energy and get me through to bedtime on fatigued days. And really, who cares about housework if we’re otherwise living our lives well with these rare blood disorders, hey?!
Lovely to get to know you a little and I’ll look forward to seeing you around the forum @Maire.
Hello there @Rose75, I don’t think I’ve greeted you before but I just wanted to say how helpful it is to read your experiences taking hydroxyurea, fellow blood clot and Myeloproliferative neoplasms (MPN) survivor. So your energy also improved after some time taking hydroxyurea. I was scared about taking it for all the all-caps terrifying CHEMO reasons. I think I grew up with the impression that if you had chemotherapy then the end was nigh, but here we are taking a form of it daily in capsules, getting on with our lives! Very Star Trek and futuristic for me which weirdly helps.
So sorry to read of those ulcers you experience, I’d heard that keeping hydrated can help too. Aside from eating ice/ice lollies, there might be some extra information from Blood Cancer UK about dealing with mouth and digestive issues: mucositis | Blood Cancer UK
Glad you found the forum @Rose75, I hope it continues to be helpful for you. Do keep sharing your tips and anything that helps with the ulcers.
Thank you for welcoming me to the forum Duncan. I have been reading posts since my diagnosis and have gained so much information and advice from them. I am glad that the forum exists as without it , those if us with such rare conditions would feel very isolated indeed.
I will be sure to try ice lollys the next time I am faced with mouth ulcers. I don’t know why I didn’t think of that ! Thank you.