Hi Luke, I am sorry that you find yourself here on the forum, diagnosis is a scary time, it is hard to remain positive all of the time, so I would be positive some of the time! Here is a link from Blood Cancer UK which will inform you more about Polycythemia. I would recommend you read the details and stay away from âGoogle researchâ, all you will need to understand about your diagnosis is here for you. You may also benefit from speaking to someone at Blood Cancer UK, please find contact details. I know how you are feeling, this is a scary time, and positive thinking can most definitely help you to help yourself and your mental health at this difficult time. I hope this helps you, please continue to reach out when you need support. M
Firstly welcome to the group and well done for reaching out to post.
I was 38 when I was diagnosed with Polycythaemia vera (PV) in August 2020 and how your initially feeling totally resonates with how I felt. Shocked, surprised, confused, anxious and uncertain and what doesnât help is never hearing of Polycythaemia vera (PV) and because of that you focus on the cancer word.
When researching (which isnât the best - not sure if google still give untreated Polycythaemia vera (PV) a prognosis of 2.5years) there isnât much out there but be rest assured there are plenty folk on here to make it feel like a less lonely journey.
One thing I would strongly recommend is reading through the bcuk Polycythemia handbook which really does have fantastic info and was collaborated with a mix of medical professionals, nurse and patients.
Itâs important to take time and understand the condition and though itâs easy for me to say⌠itâs not as daunting and itâs ok to think positively.
I remember the early stages when I was dumped with this label and nothing was really happening to start fighting it, but I now know thatâs pretty normal
The main thing that massively helped me was the people here on the forum and if you search Polycythaemia vera (PV) youâll kinda read my early posts to where I am now (which is in a much better place)
If you like Iâd be happy to answer any questions you have, you can dm me anytime but there is also an excellent support line here too.
Sometimes itâs just easier speaking to a stranger I find.
Anyway Iâll post a link to the booklet but again remember me and the superb awesome people on the forum are here for you!
Im am trying to not research stuff on google as that made me abit scared at the beginning when i knew very little, but im starting to understand it abit more now.
Obviously when i first heard the diagnosis i was in shock as i thought ive never had any systoms surely i would have had some but the DVT and PE must of been it, plus im quite a health 34 year old and it was soo out of the blue.
When i have appointments over the phone with my hematologist, they say aload of big words down the phone which i dont really understand and leaves me very confused by the end of it, even know i try to get them to explain it in simpler terms lol
The key results you need to monitor are your hct and platelets.
The important thing will initially be to get your hct value below 0.45 and these will be done through venesections. (If youâve ever donated blood itâs virtually the same) make sure youâve eaten and drank plenty of water prior.
Then youâll get monitored to see how quickly your hct goes up. If itâs slowly then your treatment maybe through venesections. If itâs quickly then youâll be offered hydroxycarbamide or interferon. (Both have their pros and cons) but there loads of people who will root for each so though the side effects maybe scary a lot of people including myself have endured minimal non life changing symptoms.
Get to know your haematologist and try and see the same one so you build a relationship. Youâll also be allocated a clinical nurse whom will be available to answer any big or small question you have.
In time youâll get on top of this and hopefully see slight changes to your life rather than drastic ones to continue as you were pre diagnosis.
Itâs important to note that there is nothing youâve done or lifestyle youâve led thatâs giving you this diagnosis. Youâre just 1/200000 so try not to blame yourself or a situation thatâs presented this to you
Oh @luke01 I am so glad that you have found us and that you have had such brilliant responses from @McVey and @Rammie18, I cannot better them.
It must have been such a shock for you and so out of the blue.
I know my diagnosis was a great shock and it took me a long while to come to terms with.
However my thoughts and emotions have been on high alert for the 19 yrs ever since.
I get anxious before and during all tests, results and appointments.
I can see there is a good place for phone appointments, but I always seem to get caught out when the phone actually rings, I donât know why.
However I do find it helps to write down my fears and questions beforehand.
I have learnt to be pleasantly assertive and persistent.
Medical speak is a different language!!!
Perhaps do not force yourself to be positive all the time, it is OK to have wobbles sometimes. As I said I am far more emotional now.
Do you have any support?
Please do ring the support line if you need to, I have found them very helpful.
Be very kind yourself and please keep posting.
@luke01 well that proves my point about not going to the gym, DVTâs attacking people on top of the steroid pumped meat heads, dangerous places
I got my diagnosis early this year for Polycythaemia vera (PV), welcome to the rare cancer club, of "you will be fine well sort of " new club motto.
At least they caught you early before things got more interesting shall we say.
Everyone has sent you great links and offered some support, especially those who have this type of cancer, but dig around the forum threads, some amazing honest conversations about both your physical and mental health responses.
You need to find a language you feel comfortable with in dealing with this, one that also allows you to talk to other people about it, family and friends, work etc.
As my clinical nurse said, that for others to understand is harder, because we donât have lumps and bumps, not on radical treatment plans, look relatively healthy and that if the gods are willing, we could have good long lives(physio for the crossed fingers all the time is not currently available on the NHS).
Though be prepared for the doctor letters that never reflect your conversations with the specialists, if possible, get someone with you if you are allowed and write questions down before you go. It is your body, your life, not just another case file after all.
Good luck and watch out for @Erica she promotes things like healthy snacks like milk chocolate, tea, hot water
Hey there @luke01, welcome to the Polycythaemia vera (PV) club. Iâm really sorry to hear of your diagnosis. I was also diagnosed with Polycythaemia vera (PV) this year and like you and @Rammie18 am considered a âyoungâ survivor. Bonkers, right?!
Canât really add anything to the excellent advice others have offered here already, but do try to take it easy on yourself. Youâre fortunate to have found the Polycythaemia vera (PV) so young as it means youâve got longer ahead of you for science to catch up and figure out ways to manage or undo the blood disorder we live with. In the meantime, Iâd say expect to find adapting to your diagnosis hardâitâs a big change and the risks can seem like a lot to live with!
Iâd also say try not to worry about exercise being a risk. Blood clots are going to clot of their own accord and itâs not about going to the gymâthe gene mutation causes the clotting. Iâm a keen hiker and have tried not to let my Polycythaemia vera (PV) or diagnosis stop me getting outdoors for exercise. You might find doing slower exercise like yoga, tai chi, or qigong suits you better at this early stage after diagnosis when you might not be feeling like going to a gym.
Really glad you found this forum and are feeling fine. Sounds like your haematocrit is pretty low and in the normal range right now so thatâs great. You might find that you stop having venesections so often once your haematocrit reaches your target, usually 45 % for men.
Have you been prescribed any medicines on top of the venesections?
And the team of hematologist are going to be discussing the next steps soon as i was told, as they mite want to put me on a low does of chemotherapy tablet
Hey @luke01, glad youâve got a team behind you. Really glad you found us here.
I imagine the apixaban is to thin your blood after that DVT clot. My dad had a DVT and took warfarin for a while to thin his blood. I had a heart attack around your age caused by a clot and have since taken daily aspirin to help thin my blood. I havenât had any untoward side effects from that. Perhaps you will also be put on daily aspirin.
My haematologist and phlebotomy nurses told me that, despite being âyoungâ, the fact that I already had a clotting incident puts me at higher risk of further risky clotting, so I was put on daily hydroxyurea, chemotherapy in pill form. Who knew it came in pills?! Perhaps you will also be prescribed hydroxyurea, although I understand younger survivors are sometimes prescribed interferon first, a different type of medicine that needs injecting at home.
Keep us posted about how it all goes. Maybe keep a journal or keep notes of changes, especially when taking new medicines. You might find your moods change and thatâs to be expected. This forum is here to answer any questions you might have and to discuss how youâre feeling about this diagnosis. Whatever youâre feeling is valid and Iâd say let yourself feel it all! Hopefully you have support closer to home too.
Hello there @luke01
Another welcome from the Support Services team to the forum and I can see that you have been given lots of resources and help already by our community.
I wanted offer our support services too, we can talk things through with you either by phone or email at what ever time suits you: Blood cancer information and support by phone and email | Blood Cancer UK
Take care
Gemma
Sorry finger problems whilst eating a chocy.
Iâd echo the advice about staying away from googke searches. There are lots of horror stories that do not reflect the norm.
I find this a great place for advice and comfort. I also use Health Unlocked Myeloproliferative neoplasms (MPN) voice which also has non UK members.
If you have a question or just want to moan about the vagaries of life please do. Bottling up the emotions will not help
Hi yeh im doing fine thanks, staying with venesections and apixaban for the moment, but my hematologist did say the other week sheâs going to discuss it with her team about low dose chemo tablets, but my next appointment with her isnt until march
Abit of a mix up with my venesection appointments which means i missed one as i didnt know about it until the day after ao i been a month without one, next one is this Saturday
Hey @luke01, glad to hear youâre settling into your treatments okay. Funnily enough I missed a recent appointment and had to wait ages for the next phlebotomy. Had mine this week though and it went well. My phlebotomy nurse emphasised how plump my veins were from drinking loads of water before, so that would be my tip! I drank nearly a gallon that day
