Hello. I am 40 years old, and just before Christmas was diagnosed with Polycythaemia Vera. I’ve had symptoms for a while now but find myself worrying more since a diagnosis . For example, when I get tingling or pain in legs, I worry about blood clots now. Any help or advice would be appreciated.
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Hello there @Gc5891, welcome to the forum. I’m really sorry that you had reason to find it, at this time of year too, and especially about your diagnosis.
While I’m not a doctor, I do live with Polycythaemia vera (PV) and asked my own haematologist how I’d know if I was experiencing a risky clot earlier this year. He said I’d feel intense pain inside my body at a specific point and that it would not be a symmetrical pain, as in it would be in only one leg or one arm, for example. I was told to go to hospital if that ever happened.
Actually, years ago I had a heart attack caused by a blood clot and that was not painful, so I think it’s wise to know now what clotting can feel like. Something I’d advise is keeping note of when you feel atypical sensations or have new or changed symptoms. These can help you get an idea of how your body feels at different times, and you can pass changes of note onto your specialists.
May I ask if you’ve mentioned the tingling to your haematologist? It’s good to let them know, perhaps even more so at this early stage after diagnosis. Never feel like you have to put on a brave face, even vague symptoms can help our specialists adapt our treatments to us individually.
Anyway, I hope that helps alleviate some worry for you @Gc5891. Do please let us know how you get on, and perhaps have a look around the forum as you’ll find many others here living with Myeloproliferative neoplasms (MPN) like Polycythaemia vera (PV) and Essential thrombocythemia (ET) and we tend to have similar treatments.
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Thankyou so much Duncan. It has been a hard few days to take it in and have Christmas to deal with. I’ve not wanted to tell all my friends and family yet, as didn’t want to worry them over Christmas. However, I’ve made the best of the situation and tried to stay positive.
I did mention to haematology about tingling etc, this was the appointment before got the diagnosis. I have another appointment in January so I will make a note of times and how often and mention.
Found this forum really useful and not so alone. I think that in time I will get used to it all. Only been just over a week. Thanks again for reassurance.
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Oh wow that’s really very recent. It’s great that you’re reaching out and honestly this is a really supportive place. I really feel for you, I remember feeling sort of raw and like I’d never understand what Polycythaemia vera (PV) was after diagnosis. Do take your time, it can feel much like shock according to many folks around the forum.
I don’t know if you’d like to read more right now about Polycythaemia vera (PV) but when you’re ready this Blood Cancer UK information is really good: Polycythaemia vera (PV) | Blood Cancer UK
This too, regarding being recently diagnosed: I've just been told I have blood cancer | Blood Cancer UK
If you’d like to speak to the lovely specialist nurses who you’ll also see around the forum, their free number is 0808 2080 888.
Take care and do reach out if you have anything on your mind.
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Hello @Gc5891
Welcome to the Forum.
Sorry to read about your diagnosis, it’s understandable you are worrying about your symptoms and processing what you have been told. Hopefully Duncan’s response has been reassuring to you.
Please know that you are far ‘safer’ now, by knowing that you have Polycythaemia vera (PV), as you will be having blood tests to monitor your blood counts and based on these the haematologist will decide a treatment plan to lower your risks.
You mentioned not knowing what symptoms might be from your Polycythaemia vera (PV) diagnosis, so
I thought I would suggest it might be helpful to start to fill in an Myeloproliferative neoplasms (Myeloproliferative neoplasms (MPN))10 Symptom tracker chart so you can see if there are any patterns or changes for example : mpn10symptomtracker
You can record these on paper, online or there is even a smart phone app for this now.
The smart phone app was created with MPNVoice (a small UK based charity), again for more information about this: saniushealth.com/mpn This link does mention a study, but you can download the app and not be part of the study if you’d prefer.
Obviously over time you’ll become the expert in your own health and your Polycythaemia vera (PV) but a symptom tracker can give you good insight, and also is helpful when seeing and speaking with your Haematologist too.
You’d be more than welcome to call our support line and speak with one of the nurses about your diagnosis, or if you ever need any support or information: 0808 2028 888 or you can email us if that’s easier support@bloodcancer.org.uk
Best wishes, Heidi.
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Thankyou so much. Yourself and Duncan’s replies have been really helpful and informative. I will have a look at that and definitely start making a tracker. Thankyou again. I’m sure I’ll be on here alot. Gemma
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You’re very welcome and I’m really chuffed to help @Gc5891. May I ask how you’re doing a few days later? Please don’t feel obliged, I know how it can feel so soon after diagnosis. Just remember the forum is here whenever you need it.
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Hello. Feeling calmer about things and have told my family now. I still feel anxious about a few things but in general feel like I’m doing okay. Had my bloods checked last week and they said that they didn’t need to do a venesection. I have a consultation on 21st Jan, to discuss how often they want me to have my bloods checked etc.
Hope you are doing okay?
Gemma
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Hello there @Gc5891, I’m good! Thanks for asking.
That’s great that you’re feeling calmer. It can be quite the roller coaster of emotions after diagnosis, if my own were anything to go by! It’s also great that you felt ready to tell family. I hope you’ve received support from loved ones, it can be a lot for them to comprehend too.
Once I’d got my head around my diagnosis a bit I shared that Polycythaemia vera (PV) information I shared with you above with my loved ones too, so they could look it up at their own pace (rather than googling outdated stuff). My dad at least found it helpful and it led to him getting tested for the JAK2 gene mutation, thankfully negative.
Just want to say from my non-medical point of view, not needing phlebotomy is a really positive sign! Must have meant your haematocrit was low enough for you not be so at risk of clotting, long may that last. It’s my blood test week, funnily enough, and my haematocrit was low enough not to need phlebotomy, yay! It’s the longest I’ve gone without it, so my treatment has found a sort of Goldilocks zone.
I’ll keep my fingers crossed that your upcoming appointment is really helpful. It sounds like you’re not taking any medicines, but perhaps prepare yourself for this to come up in your consultation. We’re considered young survivors if diagnosed before age 60, so you may be recommended just aspirin to thin your blood. There may be some talk of hydroxyurea or interferon to help slow down the blood cell overproduction that is Polycythaemia vera (PV), but perhaps you won’t need those. But I get the impression that haematologists try to “free us from phlebotomy” in favour of medication, as bloodletting is literally such a medieval treatment!
Anyway, take care Gemma and remember you can always ask or share stuff here.
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