Polycythaemia

Hello, I’ve just had a diagnosis of polycythaemia and awaiting the results of the JAK2 mutation. Following a private health check, I got a phone call from the health provider to say my haemoglobin had a red flag and I needed an urgent GP appointment - yeah, good luck with that! They couldn’t tell me what it meant as they were not medical people. I was in a real state as I didn’t know what it meant either. I managed to speak to a receptionist at the GP surgery and she was so kind and got me booked on a call with the doctor on Boxing Day - just 4 days away. The doctor got me into SDEC at my local hospital and that lead to a 5-night stay, an polycythaemia diagnosis and venesections twice a day.

I had a haematologist appointment a week later and I’m having a venesection twice a week. There’s talk of hydroxycarbimide (?) to follow but the haematocrit needs to come down to .45. It was .8 when I arrived. My haemoglobin should be between 115-150 but was 241.

I think I might be a medical miracle as I’ve been flouncing around the hospital with these shocking blood levels and feeling as right as rain. The haematologist has never seen anything like it. A ticking time bomb.

I’m eternally grateful I entered the system via SDEC as opposed to waiting in endless, immobile waiting lists like so many.

Sorry I’ve rambled on a bit but I’ve been on this planet for 59 years, have never taken medication and stayed one night in hospital when I had my daughter 32 years ago.

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Hi @PollyVera I am so glad that you have found us, what a whirlwind you have been on and it sounds as if you have had swift medical care, especially as it was over the holiday period.
You certainly have not rambled on, although you are perfectly entitled to have a ramble anytime.
I have another blood cancer, but I was diagnosed just before Christmas. I was 53 yrs old and my first half century were ever so healthy.
I think that was what really hit me and everyone as I had been so healthy, never a day off work, the reliable one etc. etc.
Work just could not cope with it, I could not explain what I did not understand myself, and I suddenly lost all the proactive parts to my job, which I loved, and I became office bound and reactive.
I can remember feeling like a ticking time bomb too, and that was 19 yrs ago.
The Blood Cancer UK support line is there for you if you would like to talk to someone and perhaps give yourself time, you have had a shock, and be ever so kind to yourself.
Please keep posting as I would like to hear more about you.

@Erica thank you for the welcome. Yes, what a Christmas present! I am currently in a denial phase and acting as though everything is normal, being jolly but know I will crash very soon.
I’ve been reading many of the posts on this forum, and what a lot of variations there are but one very caring thread that holds everyone together.

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Hi @PollyVera,
Thank you so much for taking time to share this. I am super pleased you have found us and I’m certain you will be supported by many others within our community going through similar.
It sounds like you have been through a lot lately and i am so glad you have been feeling relatively well with it.
In case you ever need to talk anything through please do know that our support service team has a helpline which is open 7 days a week- Blood cancer information and support by phone and email | Blood Cancer UK. In addition to this we do also hold quite an amount of information on Polycythaemia vera (PV) which you can access here or by ordering our MPN booklet here.

Do Take Care, Lauran

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@LauranBloodCancerUK thank you for your welcome and advice. I’ll be exploring the site.

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@Erica I was a bit me, me, me there. 19 years since your diagnosis is pretty amazing. I hope your journey has not been too fraught along the way.

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Oh @PollyVera I know the being jolly, using humour and I have a well worn smiley mask too,
My emotions have been on high alert since my diagnosis.
Just be very kind to yourself and keep posting

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Hi @Erica i am interested in what you are saying re work I was diagnosed end Nov They can’t find the type from biopsy and don’t feel it’s worth putting me through a bone marrow biopsy as the tumour is in my chest and no other area and looks like they may just do radiotherapy waiting on the decision I am 64 and since my diagnosis I have struggled with work every situation is reactive and stressful and sometimes I cry which is very unlike me. Mostly I work from home and I do some travelling and my employees has agreed to reduce that drastically, I have not taken any sick time since being diagnosed as like you I am never off.

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Hey @Janie1234 I was exactly the same as you I cry now when I least expect it, which is so unlike me and I do not do well with what personally stresses me, it gets all too much.
I technically continued to work full time but I had a lot of banked leave that I had not taken so with flexi leave and annual leave I worked part time in effect.
I actually worked, slept and ran our home.
Work could not understand why I could travel to some meetings and not others where I knew I would have to stand in the rush hour and at that time I got very feint standing. So they stopped me going to any meetings.
This was 19 yrs ago and hopefully employers have a better insight these days.
Be ever so kind to yourself.

Hi there …this time will feel.bitter sweet…bitter that you have Poly (i have Essential Thrombocythemia) but sweet that its been picked up and you are in good hands.

With ref to Hydroxycarbimide it is a widely use softer kind of Chemotherapy…many people have it in tablet form daily…like myself but obviously thats for your Doctors to sort.

With the Health Services as they are it can be difficult at times to get heard…you have to push a bit harder and fight your corner if you are unhappy with things.

This is a very good Forum for advice and even if you feel its something really minor but it irratates you then fire away on here.

Hopefully your Medical staff will advice you of support groups Mentally if you need to chat.

Anyway all the best and good luck…Lee

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Hi. Thanks for your response. I do feel grateful that it has been picked up. Thanks for your advice.

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Hi @Janie1234, thank you for sharing your experiences and I do hope you’re doing okay. It sounds as though it’s been an understandably worrying and stressful time for you. If you’d like to talk anything over, you’d be very welcome to reach out to our Support Team on 0808 2080 888 or support@bloodcancer.org.uk. I can imagine it must be tough waiting on the decision as to what will happen next, and it’s understandable to feel how you are and to cry. If it’d be helpful at all, we’d be happy to provide a listening space for you, and can also talk you through finding further support be that for how you’re feeling, or around work.

I thought I would share a couple of links from our website as well, just in case they’re useful for you-
Blood cancer: mind and emotions | Blood Cancer UK - this covers ways to look after yourself and find support.
Blood cancer: money and work | Blood Cancer UK - this covers your rights at work & further support, and I wondered whether that’d be helpful.

We are here for you, so please don’t hesitate to reach out to us if you wish to.

Best wishes,
Tanya.

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Hi Tanya
Thanks for your reply unfortunately i will probably need to leave this forum as when i try to log in on my iPad its now saying my browser is unsupported and i am unsure what to do to gain access. Replying to you on my phone which is not ideal for me i prefer to use my iPad

Oh @Janie1234 I am really, really sorry that you might have to leave our forum.
The problem is too technical for me but I really hope others can help.
I will copy your post to Blood Cancer UK just in case they have heard of this problem before @BloodCancerUK and @TanyaBloodCancerUK
Look after yourself

Hi @Janie1234, I’m sorry to hear that and thank you for bringing this to our attention (thank you @Erica for this as well). May I ask which browser and version you are using? If you can, might you be happy to email us with a screenshot of the error message you are receiving? Our email address is support@bloodcancer.org.uk

We can then pass the information on to the right team and see if we can find out a bit more information to help you.

Best wishes,
Tanya.

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Hi PollyVera
Welcome to the Support Group.
I too have Polycythaemia vera (PV) . My diagnose was a shock and a complete surprise. I only went to see my GP with itchy skin which they tried to cure with creams and antihistamines… eventually and after a blood test, came the diagnosis first with ET and then they changed it to Polycythaemia vera (PV),
I take Hydroxicarbimide 5 times a week. I have not had any bad effects at all from this medication. I think it is generally very well tolerated.
This is a wonderful group, so supportive and well informed and always very helpful. I am so glad you found us.
I don’t know what I would have done without their support.
Take care. Sending my best wishes to you.

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@oleconchi thank you for your welcome and support. Definitely unexpected! I’m not sure how I feel but my haematocrit levels are coming down steadily, so I’ll focus on that for now.

I hope you’ve found some comfort from your itching.

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Hi @PollyVera I’ve been thinking of you and I just wondered how you are doing?
Look after yourself

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Hello. Thank you for asking after me. My haematocrit levels have reduced significantly as a result of my twice-weekly venesections to 0.44, which is nearly half! I’ve been changed to fortnightly ones but didn’t need the last one. I have a haematology appointment next week, so we’ll see where I’m at and what’s next.

I hope you are well. X

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Thanks for the great update.
Please let us know how you get on at your haematology appointment @PollyVera.
Take lots of care

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