I live in North Yorkshire and was diagnosed with PV in October 2016. Like many peopleI had tell tale signs but didn't recognise them initially I had night sweats, tinglingvin my hands, fatigue and most serious a DVT and PE out of the blue .
I was eventually diagnosed following a routine blood test where my platelets, red blood count and Haematacrit levels were very elevated .
After a 18 months of weekly to 2 weekly venesections, trying but not having posituve results from anagrelide and interferon I am now well controlled on Warfarin and Ruxolitinib ( because of a melanoma in the past I cannot take hydroxyurea).
I am now really well controlled , have lost some excess weight I was carrying and keep as active as I can . After the initial shock of diagnosis I now, like many pepes living with with an MPN, get on with and enjoy my life . I keep positive knowing that through fantastic research by dedicated medics, knowledge of these complicated blood conditions are increasing massively and new treatments and ways of managing the condition are improving all the time xxx
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Dianne-Guisborough
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Hi Dianne. I am in Newcastle so almost a neighbour 😊. I was diagnosed with my MPN more than fifteen years ago - again after a routine blood test. I had no telltale signs whatsoever. I love your positive attitude to having an MPN. We can either crumble or stand up and fight - I choose to fight too 😊
Have you bern warned about that rux increases the risk of fast growing sarcomatoid squamous cell carcinomas ? Its now advised that if you have had a skin cancer before, you should have 3 monthly skin checks and take lesions seriously. And use lots of sun cream. Akways. My dematologist suggested i take Vit B3 as well.
Am just going on holiday: i ‘ll do a proper post with links when I get back.
Thank you for your message and advice . I have actually had 6 basal cell carcinomas removed in the past 3 years . I try to always be vigilant with sunscreen partly due to my history of melanoma but also due to taking the ruxolitinib. Should I be getting checked at the hospital do you think or just keep a close eye on my skin and as you say take any new lesions seriously and get them checked out sooner rather than later . Lucy my lovely daughter does a skin check every month - we call her the "mole hunter" 😂🤣 It was Lu who spotted the melanoma on my back which we caught early - it actually looked less sinister than the basal cell carcinoma near to it but Lucy who has an eye for lesions and moles thought it looked suspicious ! Clever Lu!!
I would really appreciate any info you have re the ruxo and squamous cell carcinomas .
We had a holiday home in Spain for the past 15 years but recently sold it and bought a caravan to tour and see more of the lovely UK. We had realised that most of the time we were over in Spain I was having to dodge the sun !! 🤣😂
If you google “”sarcomatoid squamous cell carcinomas and ruxolitonib” that should get you the info.
Main thing is to get any suspicious looking lesion removed asap. And biopsied. Your daughter sounds like a much mire effective skin checker than any dermatologist.
You are very fortunate to have such a supportive and loving family. My daughter is a busy attorney and my son lives in another state for the last 13 years. I was diagnosed 11 years ago but really didn’t tell them it was cancer until last year when my symptoms worsened. Now that I have a new diagnosis, they have been really supportive. I also have a loving partner and my sister lives near the hospital.
Good for you for being so positive. You look very happy in your photo. I suspect that’s not the weather in North Yorkshire presently?
I was diagnosed with ET the same year as you, and after the initial diagnosis, I’ve just got on with my life too. I’m 64 now, I still work part time and care for my 93 year old Mum. I eat fairly well, and am quite active too.
I suppose it’s easy to ‘get on’ with life when our disease is controlled and asymptomatic. I’m always aware however, that not everyone is so lucky.
Thank you for your lovely message- as you say it is so much easier to be positive when your treatment is working ! I feel that none of us know what the future holds but to enjoy each day whilst we are well can only be a good thing .
Glad you are doing well and have such a positive attitude !
I have ET.. live in the same area. Like yourself diagnosed through routine blood test. Been on HU since Feb.and platelets comming down from 1700 to 813.. suffer fatigue a few night sweats but nothing like it use to be.
I am grateful for the medics and hospital nearby. I realise this won't ever go away ..sometimes I wake up thinking it's not there. Then get reminded.
As you sat we are lucky to have a great hospital nearby looking after us so well.
I think this is a condition where it is vital you have a good and trusting relationship with your consultant - I feel really lucky with the care I receive from my Haematologist - she is an absolute 🌟 and really caring !
I hope you are keeping well - you never know, one of these days we could find ourselves sitting next to each other in the waiting room !😂🤣🥰
Thank you so much for your message - it is so kind of you to take the time to write .
We are very lucky having such a great hospital on our doorstep and also with the care we receive from them. My Haematologist is an absolute 🌟 She is so kind, caring and very approachable - I always feel nothing is too much trouble 👍
I hope you are keeping well Jill and who knows, we may end up bumping into each other at JCUH Haematology Unit !🤣😂🥰
I take it you are talking about the wonderful Dr ? If you are, can’t agree more. She always welcomes you with the most beautiful smile and is so easy to talk to. I will look out for you at James Cook Haem Dept. Take care x
Hi Dianne and Sand Dancer, it is nice to hear from a couple of local mpns, I live in Durham, so am sandwiched between you both. As mpns are so rare I wonder how many other people there are in the north east. Also I am interested to know if your relatives and friends acknowledge how serious an illness you have. Our local hospital is doing a gene a test for breast cancer in our family, and have listed all the family cancers. I gave my info as I am ET Jack 2+, 7 years, but they have left my info off the cancer list, yet my heamtologist acknowledged that the WHO had reclassified MPNs as Cancer several years, ago.
In answer to your question I am very fortunate that my family and friends ate very well informed re MPNs considering how rare they are . Quite a few of my family and most of my friends are in the medical profession- I was a Cardiac Nurse Manager, my sister a Gynae Nurse Manager and my daughter a Neuro Physio so you can see most of our friends are in the nursing , medical or physio professions . They have all taken the time to find out about MPNs and consequently understand that although you can sometimes look quite, or very well, it doesn't always reflect what is going on with our pesky old platelets and blood cells !
Some of my non NHS friends and family have asked me if I have any "idiots guides" to MPNs so I printed out some basic info which helped them to understand what can seem, a very complicated condition to get your head round even when you are the patient !!😂🤣
My GP is also really caring and supportive. She admitted that when I got diagnosed (due to her diligence at getting my blood checked when I had all these vague symptoms) she had to read up about Polycythemia as our practice has never had anyone with this condition before .
I understand your frustration when you come up against medics who are behind the times regarding the reclassification of MPNs from blood disorders to blood cancers. We are truly a rare and special breed !! 😂🤣🥰
I really hope you keep well and hope my messafechelps you a little
Hi Hydrox. I also have three MPN friends in Newcastle. Our MPN journey brought us together and we meet up for coffee as often as we can. So if any of you are in Newcastle give me a shout!
What a lovely photo! I’m glad you got your symptoms under control and are doing better. Your positivity is infectious! Thanks for sharing your experience.
I am not quite local to you but originally from yorkshire and now live in Cumbria.
I have ET, triple negative and was diagnosed 2 years ago.
Like you i try and be positive, sometimes hard but i still work full time and more( im a neonatal
nurse) and try live life as normally as i can.
I am seen locally and also at The Christie, by an amazing professor.
I have friends who are dealing with other cancers, 1 stage 4secondary breast cancer so count myself lucky in lots of ways.
Interesting to read about an idiots guide for MPN’s.. i once gave a GP in my practice an info booklet from MPN voice as he was adamant i had essential thrombocytopenia 🙄
Hi Dianne - and other North Easterners! I live in Thirsk, not so far away from you. I was only diagnosed with ET two months ago (although I suspect I've had it for years) and am very happy so far with my Haematologist. I'm seen at the Friarage, but I think our consultants are "shared" with JCUH. 😊
Hi Dianne and welcome to our forum, you have such a good positive attitude and what a lovely photo. As you can see there is lots of support from the other lovely people who are part of this MPN family and if you do manage to meet up with the girls in Newcastle for a coffee, you will have a great time they are lovely ladies. Maz
Hi my husband has post PV MF . He had PV for 4 years and last year his bone marrow biopsy revealed early stages of MF .
It's been a worry but like you we try everything to keep him going.
We've noticed his diet has a massive impact on his mood and energy levels.
We enjoy life to the full he's still working full time and will not let this cancer get him down.
Since sorting his diet out he's having really good days hardly any exhaustion.
Sugary food really drags his mood down and energy levels.
We not far from you we live in Hartlepool he works at Wilton site just before Redcar.
Positive attitude is what we always think. Medication has come a long way and. We hope he never needs a stem cell transplant. He's been tested and has 9 donors at the ready .
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