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[Esi22]

Hello,

I got the ET diagnosis on 31 March and I’m still trying to get my head round it. Reading about the side effects of the medication scared me but reading your posts has given me reassurance so thank you so much!!

[Mostew]

Welcome

. It’s so good to have so many understand folk to turn to when feeling unsure and in need of advice .

Lots of wise / kind people

[mhos61]

Welcome to the forum Esi22.

It will take awhile to get your head round your diagnosis, and then you have the strange terminology to deal with. Glad you have found some reassurance by reading forum posts.

[Wyebird]

Oh bless you , Welcome, to be diagnosed during lock down means you are unable to be at face to face events. Yes, diagnosis is scary but could be worse. As as many questions as you want. No matter how silly you think they might be.

[Dillyv50]

Hi Esi22. Yes, this forum is great. There is always someone to offer advice or reassurance. I was diagnosed wit ET jak2 at the beginning of the first lockdown. It's very difficult to get your head round it at first, especially with no face to face with the haematologist. You kind of feel 'cut adrift'. The main message that I have taken from this forum is to try and get referred to an mpn specialist. I persuaded my gp to refer me and know I am on the shortlist. I'm hoping to get answers to lots of questions my haemo hasn't been able to answer. It is scary being diagnosed but Wyebird is right, it could be worse and the lovely people on this forum will make you feel supported.

[Bokkie1511]

Hi Esi

I was diagnosed with Essential Thrombocythemia (CALR+) in 2013 when I was 56. Initially it was quite a blow and difficult to get my head round it all, but over the months, as my treatment started having a positive effect on my platelet count and with the help of this forum and all the lovely people here, I came to terms with it.

It did take a good few years and lots of adjustments to my medication for my platelet count to stabilise, but fortunately it has been stable for the past 4 years.

I would agree with Dilly's comment .... if you're not already under a haematology specialist, push to get a referral. I'm being managed by a wonderful consultant haematologist and specialist nurse and have regular blood tests and appointments (every 6-8 weeks).

Good luck

[Mazcd Partner MPNVoice]

Hello Esi22 and welcome to our forum. Really glad that the posts have been helping you. It can be very daunting when you are first diagnosed, and particularly more difficult being diagnosed during the pandemic with restrictions on face-to-face appointments.

I would suggest that you have a look at the information on our website mpnvoice.org.uk, hopefully it will answer many of your questions. We are all here to help and support you, so any questions you have, just ask. Best wishes, Maz

[Esi22 in reply to Mazcd]

Thank you xx

[Cja1956]

Welcome! You will find valuable information and and much support from the wonderful people on this site.Good luck on your mpn journey.

[hunter5582]

Welcome to the forum. It is a club no one wants to join but everyone is glad to be a part of.

It can be a hard bit of news to find out you have ET and start hearing people refer to it as a "blood cancer." it takes a bit to wrap your head around what it really means. the good ness is that you will have plenty of time to do this. you should expect to live a pretty normal lifespan.

I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. Still alive and kicking at age 65! Have had and continue to have a good life despite the MPN. there can be some challenges with it, particularly as we age, but the challenges can be dealt with.

One of the most important things at this point is to have a MPN Specialist rather than a regular hematologist on your care team. Most hematologists do not have the KSAs to provide optimal treatment. Here is a list mpnforum.com/list-hem./ .

The treatment options for ET and the other MPNs are improving. The understanding that ET treatment is about controlling symptoms/risks, not just platelet numbers is better informing treatment. There is a wealth of good information available to us know that helps us to make better decisions. Here are a few references you may find helpful.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

All the best to you on this new journey.

[Esi22 in reply to hunter5582]

Thank you so much. Very helpful xx

[nightshadow]

Welcome, this site really helped me come to grasp with ET as well.- I was diagnosed in January of this year.

It has been helpful to see what the treatment options are and how radically differently they can affect people. It also gives me enough information that I can go to my hematologist with questions that are a bit more specific than I'd come up with on the net by my own.

I really appreciated reading how people manage their ET and that the symptoms that I had prior to diagnosis was not the laziness/depression that I had ascribed it to.

It was quite liberating in a way.- as was going on hydroxyurea, which really alleviated my symptoms. Unfortunately it seems the only way to know if you will have side effects is to try the medications.

I've come to view ET as a quiet, albeit unwelcome guest, that for now needs frequent, unfortunately

expensive (yes I am in the US), care.