Polycythaemia vera - so scared

I have this week been diagnosed with this after routine blood tests plus further tests sent to Cambridge. I am so scared and feel that I do not have long to live and cant sleep and am really anxious so hope this forum can help. I have been put on Hydroxycarbamide 5 days week. I am 65, any advice would be appreciated

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Hi @Lucky50

Firstly welcome to the forum and thank you for posting.

I was diagnosed with Polycythaemia vera (PV) two years ago at the age of 38. Hearing you have blood cancer is very scary as stereotypically when you think of cancers you think lumps and tumours and then how to get them removed… but blood you can’t take that out…

If you search online you’ll struggle to find in-depth information compared to others and it’s also very very vague which really doesn’t help someone in your position of being newly diagnosed.

I’m not expert on Polycythaemia vera (PV) but I know how it’s effected me early on, and you’ll be glad to know that others on here with Polycythaemia vera (PV) have had it for many many years with very little long lasting intrusive medication.

One thing I would say is make sure you hospital med team and gp are on the same page. Most of your Polycythaemia vera (PV) will be dealt with by the hospital but side effects is where your gp comes in.

As I’m sure you’ve been told or read… Polycythaemia vera (PV) is not curable but it’s definitely manageable. There aren’t stages so a time frame will always be dependent on the individual but as long as it just stays Polycythaemia vera (PV) then your life outlook time wise is very good if not normal.

Your body is producing too many red blood cells so where it can be dangerous is when it’s leads to clots and when it’s not monitored and you’re not being honest with how you’re feeling physically, mentally and emotionally with your medical team and also others around you is where it can also cause problems and issues.

If I was able to go back in time to speak to my previous self I probably wouldn’t change a thing.

I spoke to my employer who was happy to reduce my hours so that I could deal with it all and also attend the many routine appointments as this would cause less disruption for all. I work in a school and with covid it really wasn’t an issue.

My Haemotologist has recently moved me from interferon to hydrocarbonmite and when they gave me the info on the treatment with its side effects and potential long lasting issues I was proper scared and very anxious to the point I’ve not started it yet. I was fine on my previous medication and really want to be sure changing is the best option with evidence to back it up. However, reading peoples experience of hydroxacarbomite on a few posts on here as it’s used for other blood cancers too has really eased my fears and like all medications it’s a case of everyone reacts differently. There are a few types of treatments for Polycythaemia vera (PV) and it’s decided on many factors which to start you on so you really kinda have to leave that decision to your medical team but definitely make them aware or at least your clinical nurse how your doing and maybe think about a diary and showing them at your appointments.

I feel I’m rabbiting on but I’m happy to chat more with you and hope I can be some help to you along with the amazing people on this forum who are brilliant and have a deeper and much longer experience and knowledge than me to share this journey with you.

This can be a difficult and scary experience but this forum and the charity will never make it feel like a lonely one.

Take care and keep in touch

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Hi @Lucky50 a great big welcome to our forum.
It is so natural that you are so scared and I expect you are actually in shock as well.
You have received a diagnosis that has rocked your world.
I was diagnosed 18 yrs ago and I can still replay that day in my mind as vividly as if it were yesterday. I came home and wrote my funeral music and I am still here and really enjoying life.
It sounds as if you are being well looked after medically, but I know I certainly never thought about the emotional impact of my diagnosis.
Some people find that they might want counselling, although it is not for everyone.
Have you got support from family and friends?
You now are part of our forum family and the Blood Cancer UK support line is also there for you.
Please keep posting and perhaps write down all your fears, thoughts, questions, symptoms, medical history, allergies, medications, practicalities, family medical history etc. so you have it all with you for future medical appointments. That is because my mind goes blank as soon as I walk into a medical building.
I have also learnt to be ‘pleasantly assertive’ as a consultation is a 2 way process.
Personally I would say the most important thing is that you look after yourself and be ever so kind to yourself.
I look forward to hearing more about you so please keep posting

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Hi @Lucky50 and welcome to the forum. I think @Rammie18 has given you excellent advice from the point of view of someone who has had similar experiences. Most of us on here have got one form of blood cancer or another and it can be very scary at times, but it is possible to live a relatively normal life for many years. You always have everyone on here to speak to if you need to unload and of course the superb Blood Cancer UK support team. Let us know how you get on.

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@Lucky50 welcome and hello i myself have only just joined the forum and been welcomed into the fold wonderfully with lots of msges of support from all its a great place to chat and to ask questions stay positive and look after yourself kind regards Carlos

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Dear @Lucky50, thank you for posting and I am so sorry that you are feeling so anxious about your diagnosis. Can I ask whether you have been given some written information regarding your diagnosis? If not here is our information on Polycythaemia Vera which I hope will help Polycythaemia vera PV) | Blood Cancer UK. Have you been allocated a Clinical Nurse Specialist who you can contact about your disease, treatment and any side effects? If this hasn’t happened yet I am sure it will soon, do ask at your next appointment. It is important that you report any side effect or symptoms to your treatment team too. They can also help with emotional support and signpost you to any resources that can help you.
I am sure your worries will reduce once you get into a routine with the treatment and get the support you need.
Please do call or email us if you need to talk things through: How to contact Blood Cancer UK | Blood Cancer UK
Kind regards
Gemma

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Thank you for your information and looking at side effects is scarey but then it is the same with many drugs, it can be mind blowing. Only just started taking hydrocarbonite, have to take Monday to Friday and obviously until I have my first blood test next month will not know how things are going. Having trouble sleeping as my mind just won’t shut down when I lay down to go to sleep and imagine all kinds of things. Having looked at others experience on these forums has definitely helped me mentally. 15 years ago I had hole in the heart which took some months to diagnose and then had open heart surgery and have been on aspirin ever since. Also couple years back diagnosed with type 2 diabetes so all in all this Latest health scare has really depressed me. I know I will come to terms with it but it’s been less than a week so hopefully my brain will let me accept and take it all in.

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Hi @Lucky50 This is personal thing, but once I had the shock of one frightening diagnosis that subsequent shocks and fears feel compounded as my senses are always on high alert.
As for having trouble sleeping it is so true in the words of the Mamas and Papas, the darkest hour is just before dawn, Just be kind to yourself, leaving music on helps me.
On the Blood Cancer UK website are some meditations.
Perhaps ask your GP for help.
Has anyone else got any sleeping strategies?

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@Erica @Lucky50

I don’t have issues falling asleep but staying asleep is my problem.

I’ve been on zopiclone, which worked wonders but is only prescribed for a few days. They tried giving my antidepressants but I felt they didn’t help.

My gp recommended Paul McKennas fall to sleep cd. Which I was very sceptical about but honestly it’s amazing… it’s 20mins long he chats absolute gibberish but I’ve never heard the end.

I noticed I struggle when it’s silent… guess the voices and thoughts inside my head get amplified so I now set talk radio on a low volume or have a podcast on in background on a timer that really does the trick.

Still have issues staying asleep but I’m working on it.

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Thanks @Rammie18 that is really useful.
Well I never foresaw me having a threesome with Paul McKenna and my hubby !!!
Yes, silence really let’s my mind take over too.
Look after yourself xx

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Hi Lucky50 i was diagnosed with this and Jak2 in November 2019 im also on Hydroxcycarbamide and Aspirin daily your consultant and nurse will talk you through every there’s no need to feel scared theres always someone on this forum that can help you through your worries

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Thank you Elamy I think it was initial shock and the fact it’s not curable but coming to terms now that’s it can be managed, just felt it was death sentence but after reading stories on here feel so much better x

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Hi Lucky50 I’m a few months in front of you having being diagnosed with Polycythaemia vera (PV) in November last year and of a similar age. Started on hydroxycabamide 5 days a week and increased over time to 1000mg daily over the last 6 months . Like you I was really scared, didn’t know what expect and had sleepless nights but as time goes on I have educated myself on the disease and realise it is manageable and life goes on . My specialist nurse signposted me to MPN voice web site which is a reliable source of information and advice.

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Hi QA1982 thank you for your post, it’s good to hear from people in same situation. Do you have any side effects being on Hydroxycarbamide. As I have said I am still trying to get used to what I have and at time am tearful but reading others experience really helps xx

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I seem to tolerate the drugs quite well, fatigued at times . Find it better if I take the drugs in the evening and just sleep off any side effects - think it also helps me get to sleep as I find I’m ready for bed about 2 hours after taking them .

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@Lucky50 do you know I was diagnosed 18yrs ago and I have been ever so emotional ever since, and can burst into tears at anything and anytime, even when I least expect it.
I now think that it is a release and for me healthy as I bottle things up inside and put my smiley mask on.
Look after yourself

Hello Lucky50
I was diagnosed with Polycythaemia vera (PV) about a year ago. I have been taking Hydroxycarbamide 5 days a week . The first time I took the first dosage, my hands were trembling…I was petrified, I thought I will feel sick, that my hair would fall out…I imagine all kinds of terrible reactions in my body…I can tell you now that I have had no apparent nasty reaction at all,
I am Jack2 positive. My diagnosis was a complete sock. I thought it had all been a bad dream and I would wake up…
This forum and the support blood cancer group have been so incredibly helpful and reassuring to me. I hope you find the same help.
I am sorry to say that my allocated specialist nurse is not helpful at all. She is hardly ever available. And one of my fears is that I am not monitored often enough and I worry that my blood counts can get to a dangerous level and put me in danger of a stroke or heart attack.
I have had 3 venesections and I always feel better and my itching skin seems to ease afterwards.
I am sorry to go on and on.
It is conforting to talk to someone going through the same thing.
Thank you for all your support. Look after yourselves. oleconchi.

oleconchi thank you for your reply and I am slowly coming to terms with it and today had my first phone call from my haematologist saying bloods were stable and to carry on with medication. I am currently off work as my line manager and a couple of colleagues not very supportive and I just can’t cope with that at moment so GP put me off for 3 weeks. I am lucky to have very supportive family and friends. I am 65 and just so scared I will not live for long but I have to put that at back of mind and enjoy life as like you not had many side effects of medication. This forum has been very helpful x

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@Lucky50 when I was diagnosed I found that I could not explain to work what I did not understand myself. They had never encountered someone with cancer before, let alone blood cancer. They just felt I would have an operation or medication, get better and I would go back to being the strong, reliable one again. I found keeping talking with your line manager and colleagues helped me and giving them things to read about my condition, symptoms and side effects.
I was diagnosed when I was 53 yrs old and I am 72 yrs old now and still going strong, life is good.
Be kind to yourself
This is so, so difficult but try and keep it in the day.

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