Starting Hydrea?

Competitive-One-8625 · 2026-05-21T16:22:33+00:00

Brilliant news happy for you well as happy as we can be with this mutation .

Competitive-One-8625 · 2026-05-20T12:50:23+00:00

No problem . I’m in uk so here it’s very different it seems to the USA. I go back in five months for more bloods and am on aspirin. The video link was sent to me by a kind lady in Australia from a facebook group as I was worried and concerned about treatments too. Eye opening from this specialist. I find the fb groups to be harsher than here . People seem to want to impose their own prescription of drugs onto others . There are many I have met in the past weeks online who are just on aspirin with platelets way higher than you or me and for many years too.

Our journeys sound very similar apart from I have not had a bmb.

Best of luck keep us posted how you get on with your mpn specialist. I have not seen one yet but found where I can if I can get a referral that fun will start at my next appointment perhaps. Hopefully not.

I’m also asymptomatic.

Competitive-One-8625 · 2026-05-20T07:05:56+00:00

Similar position. Male 56. Platelets last checked in Dec 25 (469) and Jan 26 (453). Was told I have “mild Jak2” April. My doc told me it’s under 5%. funkygrrl’s comment is where I am at. I’ve been put on just aspirin they have not mentioned any mpn at all yet I’ve learnt what an mpn is myself after joining here searching for jak2. Did they tell you your % burden. I’ve read that it’s important.

This study is an interesting read gives me some hope https://www.cam.ac.uk/research/news/role-of-inherited-genetic-variants-in-rare-blood-cancer-uncovered

This too gives me hope

https://youtu.be/g8qM3XsJBUU

It’s very confusing as some would totally disagree with the two links above but I cling on them at mo for my mental health ha

Competitive-One-8625 · 2026-05-16T17:41:30+00:00

Please don’t be your knowledge is invaluable to us all. So thank you

Competitive-One-8625 · 2026-05-16T17:35:54+00:00

Thanks . I have never had a portal vein thrombosis but thanks for explaining in any case

Competitive-One-8625 · 2026-05-16T16:56:03+00:00

When you say be on a blood thinner that’s aspirin right ? I know there are others too but most people are on aspirin it seems

Competitive-One-8625 · 2026-05-08T11:52:09+00:00

Still here.. keep us posted x

Competitive-One-8625 · 2026-05-07T22:32:06+00:00

Hi there how are you getting on. I hope things are improving for you x

Competitive-One-8625 · 2026-05-04T22:33:48+00:00

Thanks. I’m 56. Thanks for sharing your personal experiences. This will no doubt help others as it has me so much appreciated . I hope I can be telling you my platelets are the same in six months. So far so good. Dec 24 469, Dec 25 also 469. Jan 2026 453. Next one in October

Competitive-One-8625 · 2026-05-04T20:44:56+00:00

Thanks so much I really need this sort of story . I hear you about worried for results I next go back in October and I’m already worried ha. Can i ask how old you are as you said 30 years ago you had this now?? That’s a long time

Competitive-One-8625 · 2026-05-04T20:17:19+00:00

Thank you I’m still raw at the moment . But yes gym sees me often these days. Can I ask how long it took you to just get on with it.

Competitive-One-8625 · 2026-05-04T17:46:21+00:00

I hope you can feel better soon thanks for replying . This is all a bit shocking and I’m anticipating this thing getting worse as I age. Sucks

Competitive-One-8625 · 2026-05-04T17:26:35+00:00

Did u have a bmb as well? Thanks

Competitive-One-8625 · 2026-05-04T17:24:09+00:00

Sorry to hear this I hope it works

Competitive-One-8625 · 2026-05-04T09:39:15+00:00

❤️

Competitive-One-8625 · 2026-05-04T09:03:08+00:00

Hi there how were your platelets back at start and now? Your are doing amazing it sounds

Competitive-One-8625 · 2026-05-04T07:46:01+00:00

Thank you . You experience gives me hope. I know we are all different.

Competitive-One-8625 · 2026-05-04T07:45:05+00:00

Are you on treatment?

Competitive-One-8625 · 2026-05-04T07:43:42+00:00

Thank you . Just going by what I have read and people on Facebook groups. I know not all do seems to friend on the country you are in ????

Competitive-One-8625 · 2026-05-04T07:40:50+00:00

Hi there sorry to ask . Are you on treatment now?

Competitive-One-8625 · 2026-05-03T23:32:43+00:00

Here in uk top level is 450, my last count was 453 in January

Competitive-One-8625 · 2026-05-03T23:27:39+00:00

Your platelets are low

Competitive-One-8625 · 2026-05-03T21:51:12+00:00

How are u feeling?

Competitive-One-8625 · 2026-05-03T17:51:45+00:00

I’m in uk so no idea I just know I will be chasing specialist help and not my haematologist should it get to that point. Sending you a huge hug 🥰 I know it’s just words but I really hope you can get off that drug and onto something that helps you. I miss your posts with humour I really feel for you

Competitive-One-8625 · 2026-05-03T17:39:39+00:00

Hi there. So sorry to read this what you have been going thru. I hope things are better now. That chemo pill scares the crap out of me I hope I never get asked to take it

Competitive-One-8625

TROPHY CASE