Hello, I was diagnosed a year ago with Essential thrombocythemia (ET). Found quite randomly. As many other people here in Canada I don’t have a GP. I went to a walk-in clinic and asked for routine blood work. Lo and behold I had a raised platelet count and was subsequently referred to a haematologist.
I’m now on hydroxyurea and a baby aspirin. So far so good.
I’m curious as to what symptoms others are having, and what the life expectancy is. What are we likely to die from…if not old age!!
I apologise ahead of time for any confusion around where my posts end up. New to forums!
3 Likes
Hi @Sadie welcome to our UK forum and please do not worry where you post.
I say UK as you are in Canada which might have a different medical system to the UK with perhaps differing treatment regimes and access to different treatments.
Also we all have such personal variables and medical histories
I hope others will share their experiences with you.
As for life expectancy, I , who have another blood cancer, was predicted a 5-10 yrs life expectancy and that was 21 yrs ago.
Personally I would say keep your medical team advised of any symptoms you might have/get or changes to diet etc.
I try, and it is not easy, to keep it a day at a time and enjoy each day as it comes, who knows what the future will bring for anyone.
Be kind to yourself and really look after yourself
2 Likes
Thank you Erica, for your reply. I have since read some of the other posts and consider myself quite lucky. I’m 74 hence the hydroxyurea and aspirin treatment. I have had no obvious symptoms and again, feel lucky that this was caught early.
As well as a bone marrow biopsy (ouch!!) I had a colonoscopy and gastroscopy due to having low haemoglobin. Everything looked fine there, except they found out I also had the H.Pylori bacteria which then resulted in 3 types of antibiotics for 2 weeks. I am now also taking iron. My Hgb is still on the low side and wondered if this might also be a result of Essential thrombocythemia (ET).
I eat well and exercise lots so I think I’m doing ok.
This forum is full of interesting posts and information and everyone looks very supportive.
Thank you!
2 Likes
Hello @Sadie
I was diagnosed last year with Essential thrombocythemia (ET).
After doing a lot of research and speaking to my consultants the way I understand it as it won’t kill me……3% of people go into getting another form of blood cancer……I’m not about to be in that 3%!!
I’m on baby asprin and looking to go in the other drug next year but I want to look into that a bit more.
I have no symptoms whatsoever and hopefully that stays that way.
Mine was found during a routine blood test.
2 Likes
Hello there @Sadie, welcome to the forum fellow Myeloproliferative neoplasms (MPN) survivor! I’m so sorry to read about your diagnosis, but am very glad you found us here.
Like you I’m outside the UK and take aspirin and hydroxyurea, but I have Polycythaemia vera (PV) which is closely related to Essential thrombocythemia (ET) in the same Myeloproliferative neoplasms (MPN) family of blood cancers. Maybe you’d like to read the great Blood Cancer UK information about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
I also didn’t have symptoms prior to diagnosis but am classed at high risk of clotting due to surviving a heart attack caused by a clot many years ago. My haematologist told me we’re classed at high risk no matter our age if we’ve had a clotting event, or if we’re over 60 at diagnosis. Maybe that’s the case in Canada too?
Another thing my haematologist reassuringly told me is that we’re likely to die with these Myeloproliferative neoplasms (MPN) rather than from them. That’s good enough for me!
As for prognoses, of course these are unique to each of us and our specific medical histories, but some UK research kindly shared here by @Ali_BloodCancerUK shows typical data for each blood cancer’s incidence, survival, and prevalence: HMRN - Factsheets
Hope this helps. Looking forward to hearing how you get on @Sadie!
2 Likes
Thank you so much for sending all that information. Very helpful and answered a lot of questions. Very sorry to hear you’ve suffered a heart attack in the past. That must have been very scary - and now the blood disorder!
I must say I’ve been living somewhat in denial for the last year having had some losses and stuff to deal with. Only just catching up with all of this!!
Yes, over 60 no matter what the risks and we go on hydroxyurea and aspirin here in Canada. I’m wondering where you live. As you say “not in UK”. I’m originally from the UK.
Sometimes it’s hard to know what is ageing and what are symptoms! But I think I’m doing ok.
Thanks again!
2 Likes
Oh you’re most welcome @Sadie! Share and share alike with this sort of information, I say. I’ve noticed that folks around the forum living with these Myeloproliferative neoplasms (MPN) tend to have very similar treatments, usually only varying if the medicine disagrees with someone, and then there are other treatments available. Maybe you’d find the Blood Cancer UK information about Myeloproliferative neoplasms (MPN) helpful: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I’m very sorry to read of the losses you’ve experienced—at the same time as getting to grips with this diagnosis! I hope you’re bearing up okay. That would be a lot for anyone to deal with, so no wonder the Essential thrombocythemia (ET) minutiae was set aside. It’s taking me a while to get my head around the medical language but treatments seem pretty consistent between the UK and US (where I am), hopefully with Canada too.
Thank you for your kind words. The heart attack was so surreal and the ambulance came so quickly that it all passed swiftly. Fortunately I had minimal scarring to my heart. Now I know that Myeloproliferative neoplasms (MPN) can increase risks of clotting I wonder if my heart attack was an early sign 
My recuperation and post-traumatic resilience spurred me into leaving the UK for NYC and then settling in California in the San Francisco Bay Area. When I was diagnosed with Polycythaemia vera (PV) I quite unconsciously looked up British blood cancer organisations and joined here, only to realise maybe I’d need US peer support too! Funny how we can look to home in times of need, isn’t it?!
I hope you’ve found some good local sources of support @Sadie as well as BCUK, although I’d say other organisations might do well to offer what they do here! It’s such a thoughtful, supportive forum and the lovely specialist nurses popping in to offer their expertise really makes this invaluable.
Anyway, I’ve gone on again. If you wanted you can find others living well with Essential thrombocythemia (ET) commenting around the forum, lots of helpful ideas about the differences and similarities in treatments and what to look out for.
Be well @Sadie! Do keep us posted about how you are.
1 Like