New diagnosed with ET and on the borderline of PV

Was diagnosed at the end of Jan this year. I was told that I would have to have venesection to bring down hematocrit levels. Had one in March and was told next one would be in 3 months time. On the way out the registrar spoke to me and told me that I would need it sooner and was booked for 3 weeks later. Got a call whilst on holiday and told that my recent blood test showed there was no need to have the venesection and that the next one would be in June. Got a call two days ago to tell me that from next week I’ll be having weekly venesections until my hematocrit levels are below 0.45 (last test was 0.503).

1 Like

Hi @Adw265 I am so glad that you have found us.
I have got another blood cancer but what I do relate to is the shock, rollercoaster of emotions and anxiety you must be under.
You have entered this parallel universe of medical terms, anxious waiting, appointments, contradictions and the stress and exhaustion of medical appointments.
Do you have any support from family and friends.
You have now joined our forum family and I find people really understand and I feel supported on here.
If you would like to talk to someone the Blood Cancer UK support line is there for you.
I look forward to hearing more about you.
Look after and be kind to yourself and please keep posting.

Hello and welcome @Adw265. It sounds like you have a had lots of contact from your team whilst you get into a routine? It must take some time to get used to? How are you feeling about the treatment and diagnosis? Have you been given plenty of written information? If you need anything please do get in touch with us and also if you need to talk through things we are here Blood cancer information and support by phone and email | Blood Cancer UK. Take care Gemma


Hi Erica. Thanks for getting in touch. I have the support of my wife and two best friends. I have not made my family aware as my dad passed away at the beginning of March and didn’t want to put them under any more stress.

1 Like

Hi Gemma. Thanks for getting in touch. Having had the venesection once I didn’t want to have to go through that again (but knew I had to). I was relieved when I was told 3 months before the next one. When I was told weekly I think that was when I realised that I may need more support that I currently have.


Yes @Adw265 it is difficult to know who to tell and when.
However your wife and two best friends sounds good.
I hate asking for help but when I have people have been so pleased that they can actually help and even just be an ear.
Yes, if you are going to be having frequent procedures and treatments you might need extra help.
Look after yourselves and spoil yourselves and please keep posting.

1 Like

Hi @Adw265 and welcome.
Lots of great advice and support offered already from our forum. I’m glad you’ve found us as I know there will be lots of people who can share their experiences.
I’m glad the time between procedures has been extended for you.
Please keep us updated on how you are :blush:

1 Like