Hi, I am new to this site, I was diagnosed in 2018 with Polycythemia Vera and am currently on Hydroxyurea and various blood pressure meds. It was a bit of a shock at my age (75yrs) and I do not know anyone else that I can chat to when problems arise and they do, especially side effects. Thanks for letting me join the forum
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Hi @jinx we are honoured that you have joined our forum, we are very much about supporting each other.
However if you would like to talk to someone the Blood Cancer UK support line is there for you. There is also a lot of helpful information on their website.
There are others on this site with Polycythaemia vera (PV) and hopefully they will find you. I hope you do not mind that I have slightly changed the title of your post.
It certainly is a shock when we are first diagnosed and I remember feeling that I was the only one in the world in my situation.
It felt a very lonely time and I could not explain to others what I did not understand myself.
Please keep posting I would like to hear more about you.
Look after yourself
Hope you’re ok… and having a nice weekend
I was diagnosed with Polycythaemia vera (PV) in Aug 2020 and happy to compare, answer questions or be a Polycythaemia vera (PV) buddy
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Hi, a bit sore at the moment, has a suspicious mole removed yesterday but apart from that I am fine. It is good to speak to you, if you need a listening ear I am here. Hope your weekend is ok.
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Good to hear things are going ok
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Hi Jinx
Welcome I find this group very supportive and flit in and out from time to time.
Take care stay safe.
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Hi. I have had Polycythaemia vera (PV) for 20 yrs but just been told I have to take that drug too. It would be nice to share with you what side effects etc you have. I have read up about it and it’s got me worried so your help would be appreciated. Thx
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Hello @TinaW1 and @jinx, thank you both for posting and I do hope you find the Forum supportive? There is so much peer support here that I am sure will help. Here is our information on Polycythaemia vera (PV) treatments and Hydroxycarbomide is included Polycythaemia vera (PV) treatment and side effects | Blood Cancer UK and I would also recommend a read of the information that our colleagues at MPN voice produce about the drug too Hydroxycarbamide – MPN Voice. I would advise that any side effects should be reported to your treatment team as they arise so that they can support you with managing this. Overall, this drug is very well tolerated once the dosing is correct. If you would like to talk through this please do contact the Support Services Team How to contact Blood Cancer UK | Blood Cancer UK. Kind regards to you both Gemma
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Thank you Gemma, at the moment I seem to be fighting on two battle fronts. I find MPN Voice very helpful and would recommend it to others. I have just had a Melanoma removed and it is taking me some time to recover, but thank goodness it was caught early, I have had my second op to remove more margins around the site but a very large Hematoma formed which has meant that recovery from the op has been very slow. I also feel my consultant is very dismissive of any symptoms from the Hydroxyurea. I have lost 2 toenails because of bleeding under the nail and frequently get Uric Acid Kidney stones, very painful. All the investigations from my GP have not found any other underlying causes for this but concluded it was the Hydroxy as it can be a rare side- effect. Hoping that others are having an easier ride and remaining fairly healthy.
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Oh @jinx you are having a rough time of it.
Kidney stones and loosing toenails must both be so painful.
Please look after yourself and the forum and the Blood Cancer UK support line are both there for you.
Be kind to yourself
Hello @jinx, it does sound like you are having a tough time. Are you any any medication (like allopurinol) for your kidney stones? Are you able to talk to a Clinical Nurse Specialist about your side effects? Gemma
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Gosh @jinx. That’s a double whammy and you must be exhausted! It’s hard when you feel your consultant is dismissive. Please take care and keep us updated.
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I don’t have a clinical nurse specialist for my Polycythaemia vera (PV), I have been given one for my skin cancer and she is lovely. Thank you for your concern, it makes it easier knowing others know what you are going through. Yes the exhaustion is hard. thankfully I am retired so can rest a lot.
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Hi Tina, not everyone gets the same side-effects but I would go on to MPN Voice, everyone is different. I think my advanced years don’t help me and it is sometimes difficult to know what is Polycythaemia vera (PV) and what is not. Try not to worry, just check with your Consultant if you have side-effects that you are worried about. I also have a wonderful GP who I can always talk to. Wishing you all the best and Speak up if you are worried.
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Hi @jinx perhaps talk to your skin cancer CNS about your symptoms and see what they advice.
Your exhaustion might be what I call fatigue which is a common blood cancer symptom and yes, I have to consider if it is my my my maturing age.
Having got to know myself better over the last 18yrs since I was diagnosed I manage my fatigue on a daily basis.
I had a re-occurring skin cancer op on my head at the end of Oct, that has been slow to heal, most of it has now healed, but I still have a hole in my head that cannot knit together.
Take care and please keep up dating us,
Look after yourself
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So sorry to hear about you recurring skin cancer, sounds as if it was painful. Yes learning to manage my fatigue as well and as you say day by day. I can’t tell ypu jow lovely it is to know I am not the only one and hearing from others in the same position is very reassuring. Thank you.
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Hello @jinx, I would ask your Haematology Consultant next time you have a review if there Clinical Nurse Specialists you could call? We are also happy to support you as well so please do use the phone number or email address for the support servives team How to contact Blood Cancer UK | Blood Cancer UK. Really glad to hear you have good support from your Skin Cancer Nurse. Take care Gemma
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Hi Gemma, Ii will do as you advise, thank you.
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