Hi!! I’m new to this site and was looking for some advice and any stories of who have also experienced the same or similar. Here it goes;
My mum was diagnosed with Polycythemia Vera back in April 2024. A very uncertain time as my mum was very much kept in the dark because they forgot to send out a letter telling her of her diagnosis. The way my mum found out was when she was booked to have a blood withdrawal, where i sneakily looked at the paperwork which said ‘Polycythemia vera’.
Since then my mum was having frequent blood withdrawals which was helping with symptoms. I also have forgot to mention about 3 years prior to this diagnosis my mum had experienced blood clots on her lungs, where she was given blood thinners and has been on them ever since. No mention or tests done to find out what had caused these. I seem to think that this was caused by Polycythaemia vera (PV) back then and eventually symptoms worsen and lead to the diagnosis.
Once my mum had a fair few blood withdrawals, her consultant wanted to try my mum on hydroxyuera, all was going well with this however, when have a routine check they told my mum that her platelets were dangerously low and to stop taking them immediately and once platelets were back up that he would book her in for another blood withdrawal and a potential bone marrow biopsy further down the line however this was the last my mum heard from her consultant!! 5 months have passed till now where my mum’s symptoms had started to return and she had to book a GP appointment. (yes i know she should have chased this ages ago but my mum struggles and will put things off like this, ive nagged her months ). The GP said to my mum that he was sorry and must have slipped through the net! anyway later that day my mum received a phone call from the hospital and a different consultant to her original one, apologising. She is now booked in for a blood test and he wants my mum to have a bone marrow biopsy next week! To say my mum is nervous is an understatement, she has not had one of these yet and is very much scared of the outcome especially as she has had no treatment for 5 months apart from taking her blood thinners. Sorry for the essay, that’s me shortening it down too! So with all that being said I was wondering if anyone had experienced the same side effects to hydroxyuera? any knowledge on how or if my mum not having treatment for 5 months could have affected it, to progressing into something else? Im feeling very anxious about it all. Is it likely she could have myelofibrosis?? Thank you for taking the time to read. Would be grateful for any responses or stories you may have.
Hi, I had Polycythaemia vera (PV) for 23 years before I developed Myelofibrosis. For most of that time my Polycythaemia vera (PV) was sucessfully treated with Hydoxycarbamide.
Patients with Polycythaemia vera (PV) should have regular blood tests and consultations with a Haemotologist to monitor their Polycythaemia vera (PV) and treatment. That does not seem to have happened for your mum.
I think I would also ask the care team about the blood thinners as other than aspirin it is not medication I have heard being used to treat Polycythaemia vera (PV) but that doesn’t mean they aren’t. Maybe you could ask one of the Blood Cancer UK nurses on this site. I am sure someone will be along to tell you how to contact them.
A bone marrow biopsy is usually the procedure that finally confirms the diagnosis, surprised your mum has not already had one. I have had 6 of them and they are a little uncomfortable but tolerable, there should be gas and air available if needed. Any anxiety should be discussed with your care team.
I hope that helps a little bit. Let us know how you get along.
Hi @lethby welcome to our forum.
Before I forget I will copy your post to the Blood Cancer UK nurses for you @Jonpd@BloodCancerUK_Nurses
Perhaps you and your mum might want to sit down and write down all your fears, questions and practicalities to ask at her next appointment.
If she is going to have a bone marrow biopsy first. and is naturally nervous, I believe in telling my medical team and I expect they will help her.
If either of you would like to speak to the Blood Cancer UK support team they are there for you on 0808 2080 888
Be very kind to yourselves and try and be as succinct as you can in getting your questions etc. over and that you understand the answers.
Please do let us know how you get on and take care of yourselves
Thank you so much for your reply @Jonpd I will pass this onto my mum.
Sorry to hear you’ve had to go through this for so long but good hearing yours was manageable for a long time.
Yes unfortunately I dont believe my mum has had the best team of people dealing with it. Shes usually sent on a wild goose chase around the hospital when it comes to booking blood tests etc.
I believe my mum is on the blood thinners not because of the Polycythaemia vera (PV) specifically but because she had suffered with the blood clots a few years back so they have said she must stay on them, however I think they have said it helps with it.
I am surprised also having done a bit of research. I know a few months back they said they would like my mum to have one but then no contact. Hopefully next week once its done it will help with getting my mum on the right track for treatment. I will keep updated once I know more! thanks again
Hi @Erica thank you very much!
I will pass this all onto my mum! its nice to know there is lots of support out there!
The biopsy will be her first one so yeah she is naturally very nervous of the procedure itself and the outcome thank you for the advise will definitely get some questions ready and will keep you uodated!
Welcome to our forum and thank you for posting. I can see you have already received some great support and advice from our lovely forum members.
I am sorry to hear about your mum and all she has been through recently. It is understandable that you are anxious about the affects of not having treatment for 5 months could potentially have on your mum. I would suggest discussing this with the consultant when you see them and also ensure that your mum has a clear treatment plan after her bone marrow to make sure this does not happen again. Does your mum have a clinical specialist nurse at all? They can help to play a key role in your mums care planning.
Hydroxyurea is a common chemotherapy treatment used for many types of blood cancers. Common side effects include low platelets which is why bloods need to monitored regularly. I enclosed some information here from Cancer Research UK which you might find helpful Cancer Research UK Hydroxycarbamide
It is important to talk to your mums hospital team about your concerns including your worry that that she could have progressed to myelofibrosis. Once the results of her blood tests and bone marrow are back, hopefully these concerns will be addressed for you both.
I hope your mums bone marrow goes ok for her and she does not find it too difficult. Just to mention, as she is on blood thinners, some medications are best not taken before this procedure because they can increase the risk of bleeding. If she has not been informed or you are unsure, please check with the hospital team before the procedure.
Please let us know how your mum gets on. We are all here for both of you.
Take care
Fiona (support services nurse)
Hello there @lethby, welcome to the forum. It’s so lovely that you’re here to support your mum. Your care and concern come across so clearly, but please try not to feel bad about anything you should have done—you’ve pushed for clarity around your mum’s diagnosis and treatment and now it sounds like she’s properly in the system, so to speak. Good work! It’s not always easy to navigate healthcare around these rare diagnoses.
I can’t add to what dear @Jonpd and @Erica have shared, except to reassure you that bone marrow biopsies can be relatively pain-free, if the one I had is anything to go by. Do suggest your mum has local anaesthesia if she can. For me it felt like having a tooth scraped at and removed, perhaps your mum will know those slightly uncomfortable sensations. And then afterwards my lower back felt a bit bruised internally for a few days.
Perhaps you might like to read more about Polycythaemia vera (PV) and its typical treatments—I’ve found it really helpful since my own diagnosis with Polycythaemia vera (PV): Polycythaemia vera (PV) | Blood Cancer UK
And I’ll share what my lovely haematologist reminds me; that we are more likely to pass away with Polycythaemia vera (PV) than from it. Your mum hopefully has a pretty normal life ahead with just some slight adaptations once she’s got used to treatments.
Do please keep us posted and have a look around the forum where you’ll find many of us living well with Polycythaemia vera (PV) and other Myeloproliferative neoplasms (MPN).
Hi, thanks so much for your reply! I don’t believe my mum has a specialist nurse, I really feel like shes been failed not getting the right support at our hospital and not given regular treatment and tests
I will check that out thank you, I believe that the platelets when so low that any bump could of been fatal and that they were going to look at alternative medication but thats where contact ended.
She had her blood test yesterday, her GP phoned today to say they had changed which we were expecting having had no treatment for 5 months, though my mum is feeling very anxious, dissecting every word he said. He also wanted to make sure that my mum was booked to see her consultant which she is. Which I am feeling nervous about to be honest!
Thank you I have let her know this and shes going to ask her consultant about this before the biopsy!
thanks again
Hi @Duncan thank you for your kind words and advice!!
Yes it seems she is back in the system! Il make sure she stays in it too! ha
Thank you for giving your experience when having it done I have read your message to my mum, so that was helpful. I not sure if i can but I was going to see if I could stay with my mum whilst she has it done.
Ahhh thats a very good way to put it!! I just want her to live out a normal long life! (id be lost without her) Same for everyone, like yourself that has it!
Oh you’re most welcome @lethby, I’m glad to have been helpful. I can empathise with how terrifying this can all feel and it’s such a steep learning curve of haematological information. Just take your time and I bet you’ll continue to be an amazing support to your mum.
May I ask how she’s getting on? How is she taking all this new information? Would your mum find it helpful to join the forum too?
I’d double-check with the hospital where your mum is having her bone marrow biopsy (BMB) but I imagine it’ll be fine for you to accompany her. My other half came in with me and it was very comforting, and then I didn’t need to worry about getting myself home with wobbly legs!
Hi lethby, hope you and your mum are feeling better. It’s overwhelming at first, but as they say about eating an elephant, one bite at a time. The bone marrow biopsy is not pleasant and I’m in no rush to have another, but I’ve endured a lot worse. I had my biopsy last summer I’d have to look up when, so it does not loom large in my memory, whereas I can tell you exactly when I started my medication which has transformed my life.
As the others have suggested talk to your doctor to allay fears. I am in Spain so the regime may be different, but I was given a sedative and a local anaesthetic. Yes it hurt, but definitely bearable. Except for lifting anything heavy ( which I try to avoid doing anyway as I’m lazy ) and twisting my back in certain positions when there is some discomfort from time to time until the internal bruising heals, but again nothing over the top you can walk our of the hospital as easily as you walked in. You can pretty much carry on as normal straight away.
I definitely support Duncan’s suggestion of asking your mum to join the forum herself. Generally I don’t do social media, I don’t have Facebook etc, but I’m finding it easier to participate as the weeks go by and personally I find it quite therapeutic.
Anyway best wishes to your mum and take a good dollop for yourself.
). The GP said to my mum that he was sorry and must have slipped through the net! anyway later that day my mum received a phone call from the hospital and a different consultant to her original one, apologising. She is now booked in for a blood test and he wants my mum to have a bone marrow biopsy next week! To say my mum is nervous is an understatement, she has not had one of these yet and is very much scared of the outcome especially as she has had no treatment for 5 months apart from taking her blood thinners. Sorry for the essay, that’s me shortening it down too! So with all that being said I was wondering if anyone had experienced the same side effects to hydroxyuera? any knowledge on how or if my mum not having treatment for 5 months could have affected it, to progressing into something else? Im feeling very anxious about it all. Is it likely she could have myelofibrosis?? Thank you for taking the time to read. Would be grateful for any responses or stories you may have.