Hi just introducing myself, I’m Dave from south Wales who was diagnosed earlier this year with polycythemia Vera with the jak2 gene mutation. Just wanted to wish you all a great Christmas and a fabulous new year, lastly thanks to everyone who works in the NHS or for the blood cancer charity you are giving all of us hope for a better future. Xx
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Dear @Davemorris28,
Welcome to the forum, I do hope you are doing well following your diagnosis of polycythaemia.
I just wanted to say thank you for your lovely message.
Wishing you a Merry Christmas and a Happy New Year.
Best Wishes,
Heidi J (Support Services Nurse)
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Thanks very much for your message and for all your help and support, I initially found my diagnosis a bit difficult but thanks to the amazing care and support I have been receiving from the haematology department at the royal Gwent and regular testing at Nevil Hall I consider myself lucky to have amazing people like you in my corner. Merry Christmas to you and all your wonderful colleagues
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Hello there @Davemorris28, welcome to the forum. Iawn from one Welsh Polycythaemia vera (PV) survivor to another, I’m really glad you found us here and I second your lovely season’s greetings and best wishes to Blood Cancer UK and NHS professionals.
Sorry to hear you found your diagnosis difficult, I really can empathise. Perhaps when you’ve got some time after festivities you might like to look more around the forum as there are many of us living well with Myeloproliferative neoplasms (MPN) such as yourself.
Anyway, I’ll look forward to hearing more of how you’re getting on @Davemorris28, iechyd da!
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Hey Duncan thanks for your message and appreciate you reaching out, hopefully early next year I will change meds from hydroxycarbimide to interferon. Hope you have a great Christmas, all the best Dave
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Hi, I have only just joined the forum and I am not sure how it works.
I was diagnosed with Essential thrombocythemia (ET) earlier this year , due to a leg ulcer I haven’t been able to start the Hydroxycarbamide. I am finally going to start on January the 5th . I have read all the side effects and quite frankly I am petrified! I would love to hear other folks experience of taking the drug .
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Hi, I’ve been on hydroxycarbimide since May and although the dosage has been altered many times from 2000mg per day to 1000mg I can honestly say that I haven’t had any problems or side effects, the only reason I’m coming off it next year is due to my age (52) as it’s not a drug that I would like to take for the next 30 years . Honestly it’s not anywhere near the strength of the intravenous stuff.
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Hello there @Janimac1961, welcome to the forum. I’m sorry to read of your diagnosis with Essential thrombocythemia (ET) and that ulcer, sounds like it’s healing well if you’re about to start taking hydroxyurea.
In 2023 I was diagnosed with Polycythaemia vera (PV) which you likely know is closely related to Essential thrombocythemia (ET), and I’ve taken daily hydroxyurea since. While I was also very concerned about its potential side effects, I’d say it’s worth bearing in mind that these need to be listed for the sake of medical transparency. From what my haematologist tells me, and from what others around the forum say, we’re very unlikely to have severe ongoing side effects from taking hydroxyurea.
Something my haematologist also reminds me is that hydroxyurea has been the main treatment for folks living with sickle cell anaemia and despite taking it sometimes for many decades research shows no greater incidence of other cancers in these patients. I read that secondary cancers like skin cancers are listed as potential hydroxyurea side effects, and that our immune systems can be weakened. Hydroxyurea is considered a mild chemotherapy like @Davemorris28 says, and I’ve come to feel that I’d rather control my chronic blood cancer with hydroxyurea’s potential side effects than be at greater risk of clotting, having already survived a serious heart attack.
Speaking from personal experience, I have yet to develop any of the known side effects except fatigue—my main worry was losing hair, which thankfully hasn’t happened. I know other Myeloproliferative neoplasms (MPN) survivors around the forum have different experiences, or cannot tolerate the fatigue or other side effects brought on by hydroxyurea, and so they can change to another cytoreductive medicine like interferon or ruxolitinib.
So perhaps you’d like to read more about hydroxyurea from blood cancer experts like MPNVoice: Hydroxycarbamide – MPN Voice
I found it really helpful to read different people’s threads around the forum about living with Essential thrombocythemia (ET), Polycythaemia vera (PV) and Myeloproliferative neoplasms (MPN) using those terms in the search box. We’re all very individual in how our bodies and minds manage our treatments so you’ll see that there are many options for us.
And if I may say, a couple of years down the road, I never thought I’d be feeling sort of back to myself after such a shocking diagnosis and taking chemotherapy! It’s become more like background noise than the incessant sledgehammering anxiety at diagnosis.
Do let us know how you get on @Janimac1961, and don’t hesitate to call Blood Cancer UK’s lovely specialist nurses free on 0808 2080 888 if you need some expert medical advice.
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