Update on polycythemia vera

Good morning,
Hope you are all keeping well.
So I had my telephone consultant appointment yesterday, following on from previous increase in my platelet levels, they have increased over the last few months and my level is currently 1038. I have been advised they want a face to face appointment on Thursday, which will be my first due to covid restrictions. I was told they want me to start hydroxcarbamide which i will be on forever, dose yet unknown depending on how i respond. I will also now go to weekly blood tests. I feel since my PV diagnoses in May last year this is moving really quickly and has really frightened me. Is it normal to be on a drug like that forever? And what side effects am I to expect. Anyone that is on hydroxcarbamide your assistant would be very much appreciated. Thank you

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Hi @Colbert1970, I cannot answer your medical questions but I definitely would advise that they go on your list for you to ask your medical team on Thursday, even those fears.
It must be a really difficult, frightening time for you, so many unknowns, I think the not knowing is always the worst.
We are here to support you and if you would like to talk to someone the support line details are above.
Please do let us know how you get on on Thursday, take care and look after yourself.

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Hi @Colbert1970 . It sounds like everything has moved really quickly and that would make everybody anxious. I’m sure there will be others that can share their experiences. Until then, write down all off your questions, ready for your appointment on Thursday. There have been some other conversations on other threads. If you type the diagnosis into the search bar you should be able to see them all. Take care and let us know how you get on on Thursday. Sending special wishes :blush:

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Hi @Colbert1970. I can understand your concerns especially as things seem to be moving you rapidly for you. I really feel for you coping with all this in the middle of a Covid pandemic. I was on Hydroxycarbamide for many years to control a high platelet count. I have a different disease to you, myelofibrosis but from my experience Hydroxycarbamide is a fairly mild drug and usually well tolerated. In most cases it does have to be taken long term otherwise the platelet count creeps up again. I no longer take it because my disease has changed from producing too many blood cells, to now not producing enough. However, I have had my MPN (myeloproliferative neoplasm) for 28 years now. As the others have said, it is a good idea to write down all your questions ahead of your forthcoming appointment. I hope I have been able to reassure you a bit. Warm wishes. Willow

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I have been taking hydroxicarbonide for 6 years with no ill effects. I take one a day and w on a Sunday. I have essential thrombocythenia. My platelets were very high, diagnosed by a routine blood test for something else. I was very worried at first but try not to think about it too much now as it is well controlled with the medication. I have s blood test every e months and a telephone consultation.

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Hi @Colbert1970 . How did you get on yesterday?

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Good luck @Colbert1970 . It’s always scary to start a new treatment especially when it’s a long term one. I hope that your medical team can give you the reassurance you’re after and do let us know how you get on.

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Good morning all,

Thank you so much for your messages, sorry not been on here this week as it’s been a funny ole week. At my appointment Thursday I had a blood test, then signed a consent form to start hydroxcarbamide. I am starting on 2 tablets a day, 1000mg which apparently is on the higher scale but its needed as my platelets are so high. I am now on day 3 and all ok at the moment apart from bad headaches, but tbh I always suffer with them so not sure if this is 1 of the side effects! I have 2 more blood tests booked before my next review on the 18th March. I am so interested to see if there will be any change in that short time. Still no news on my covid jab, apparently my surgery is waiting on stock. I am so glad I found this forum as I was convinced I was on my way out until I found that lots of you have blood disorders and are still here years later to tell the tale. Sending you all love and feeling thankful :heavy_heart_exclamation:

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Hi @Colbert1970 . I’m really glad that there have been so huge side effects as yet. I hate headaches. I suffer from them to. I get really frustrated when I can’t decide if a headache is a new symptom or just a ‘normal’ headache in my world. That’s one of the things I find the hardest on my blood cancer journey! Just keep a note of them. It’s always worth mentioning at your next appointment. I think the forum is a very reassuring place. There is just something so amazing about being around people that understand, who share and who give you hope. Everything crossed that the medication is working well. Please let us know how you are getting on over the next couple of weeks. Hope you’re relaxing today :blush:

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My platelets were close to 1000 for a long time - 17 years, eventually they told me I was too old to let it go on longer, so I went onto hydroxycarbomide, and have been on it 5 years,
I take two each weekday, and 1 on each weekend day, and my platelets are stabilised under 400, they are expecting me be to be on it forever.
I was sick to begin with, and was on anti sickness pills for 3 months, but then I could come off those.
I find my skin is very sensitive to sun now, and have to be very careful
… I intend to be here a lot longer :slight_smile:

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Thanks for the update @Colbert1970, so you have started on hydroxcarbamide.
Frustrating that there is still no news on your Covid jab, yes, I had mine through my surgery and not a larger hub.
Yes, isn’t it great to realise that there are others in a similar situation to you, even some further down the road, and some even enjoying life (well, pre Covid restrictions !!)
Take care and please let us know how you are doing.

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Hi @heatherthomas yes, I have to be very careful of the sun, blond with thinning hair.
I now have, although I say it myself, a very fetching array of different hats for all occasions !!!
I am glad to hear that you intend to be here a lot longer.
How are you doing with lockdown 3, or whatever number we are up to, they all blur into one for me?

Great to share your experience and to hear things improved with time :blush:

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I also have ET and on hydroxicarbomide for over 2 years, only side effect for me is that im always tired, sometimes depressed, so i suppose it could be worse.

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Hi @Ruthiebabe1, if you do feel depressed please reach out for help to your medical team, perhaps counselling, or Macmillan etc.
Have you got support from any family or friends?
Don’t forget how we have been in Lockdowns for a year which I think is so difficult for everyone, let alone us. I am missing social interactions so much.
Also we are here to support each other and if you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk

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