im new

[SeaPinesfan]

i was just diagnosed w ET and am hoping to connect with others

[saltmarsh]

Welcome. This is a great supportive and informative group. Post your questions or just read what challenges and successes others are experiencing. For me, it has been quite a positive experience. I'm 78, diagnosed with polycythemia vera 5 years ago and doing quite well, partly as a result of what I've learned here. Wishing you the best going forward.

[SeaPinesfan in reply to saltmarsh]

thanks so much ! Im hoping to learn from others to avoid heavy meds in the future 👍

[Sprat19]

Hi welcome. Also ET. Now 15 years in. I am 64. Was on aspirin only till almost 3 years ago. Now also on Peg interferon. I have the MPL mutation.

How are you coping etc.

You will find some very helpful knowledgeable people on here.

[SeaPinesfan in reply to Sprat19]

thank you so much for responding . I have been feeling tired and just not myself for almost a year but had multiple

Surgeries last year so thought was still healing - when I hot my diagnosis last week I didnt know what to make of it but I hope to stay off meds as long as possible. 👍

[Mostew]

Welcome . Glad you found us. Hope you have a good consultant who you feel able to raise concerns with.

[SeaPinesfan in reply to Mostew]

Thank you!!! It is nice to have a place to share with others at a confusing time 👍

[Mostew in reply to SeaPinesfan]

I was diagnosed about 5 years ago. Took me a long time to accept i wouldnt be able to avoid taking conventional mmedication ... 2 years...

i now combine both natural and conventional

Eating Mediteranian style food that are anti iflammitory helps to

Finding this site was and continues to be a big part of my life .

[hunter5582]

Hello and welcome. Glad you found your way here.

I was diagnosed with ET over 30 years ago. It progressed to PV about 11 years ago. I have been living a good life while managing a MPN and at age 69 plan to continue to do so.

The good news for all of us is that treatment options for MPNs have improved so much in recent years. We have more choices now than ever before and real hope to prevent disease progression with medications like the PEGylated interferons and JAK inhibitors. More options using different pathways are in development. With proper management, we can plan to live a normal lifespan.

The most important thing at the outset of treatment is to consult with a MPN Specialist. MPNs are rare diseases and most doctors, including hematologists, have little experience with them. Many doctors are out of date on the state of the art in MPN care. Optimal care requires MPN expert input. Here are two lists of MPN expert providers.

mpnforum.com/tsr-the-list/

pvreporter.com/mpn-speciali...

Wishing you all the best as you embark on this journey.

[SeaPinesfan in reply to hunter5582]

Oh wow! Thanks so very much! I see a few names that are close to where I live so I will contact them- I appreciate your kindness and guidance so much

[Mazcd Partner MPNVoice]

hello and welcome to our forum. It can be very daunting when you are newly diagnosed with ET, there is such a lot to learn and understand. I would suggest that you read the information we have on our our website mpnvoice.org.uk there is lots on there about ET, the medications used to treat it and much more.

Best wishes, Maz

[SeaPinesfan in reply to Mazcd]

Thanks you- i will!!!! I appreciate it 👍

[MissLesley13]

Hi I'm Lesley i also have E.T. happy to connect .

[SeaPinesfan in reply to MissLesley13]

Thanks Lesley- everyone has been so kind

[LT55]

Welcome. All of us here know what an unsettling time it can be initially after an MPN diagnosis. I know I personally had never heard of ET until I was diagnosed at at 50 in 2015. As others have said, ask questions as they come up, read what you can from the amazing resources available on this website, and get connected with a hematologist that really understands MPNs (i.e., an MPN specialist). MPNs are so rare that the average hematologist often doesn't have enough experience with them and/or follow the latest treatments. It may take a bit to get an appointment with one (mine in Chicago books appointments 5-6 months out), but that is okay.

[SeaPinesfan in reply to LT55]

Will do, thank for the support and advice !

[Threelions]

Hi,

A huge hug & welcome.

I was diagnosed with ET around 5 years ago.

Interestingly we are a similar age (I’m 57 now) .

Any questions, thoughts or support you need were all here to help you in any way we can.

I’ve found this group to be one of the most important things in my MPN life post diagnosis.

You can sometimes feel a little isolated after diagnosis so it’s important to remember you can turn to this group at any time & know you’re in the company of people going through similar things. X

[SeaPinesfan in reply to Threelions]

I am overwhelmed with the kindness you are all showing me 😇 thanks so very much , it is appreciated!!!

[johnnyjumpups]

I also have ET, diagnosed 2 years ago. Glad you are here.

[Mtn_Lake_4ME]

Hello and welcome! I, too, have ET for 9 years, I am 67 yrs old. I have been on hydroxyurea for 9 years and doing fantastic! No side effects and now exploring switching to Besremi. I have found thinking positive and not letting the diagnosis define your life to be helpful. I have learned a lot on this site. It's a very supportive group. Take care.

[Cja1956]

Hi and welcome! This is a wonderful site. I’ve been dealing with some form of MPN since 2008, starting with ET, and then a diagnosis of MF in 2019. I’ve learned so much from this site. I wish you well in your mpn journey.

[AnBee]

Hi. I just wanted to let you know that I have had an MPN (ET) for more than 23 years with very little problems. After a very bad divorce 4-5 years ago I progressed to Myelo Fibrosis where I now inject interferon once every 2 weeks. The last 6 months I have been hiking in the Himalayas in Nepal and travelling and volunteering in India. I carry my drugs with me but it hasn’t stopped anything I want to do in life. I paint, I sing, I hike a lot. I take good care of my diet so very little carbs and walk 5 kms per day. I am 67 and get tired in the afternoons but put that down to age!! I also keep a close eye on my blood tests which I have regularly. There is a full life after diagnosis still. I would just recommend a very clean diet ( no carbs) and a lot of water ( I drink 2-3 litres per day with sea salt in it) no alcohol. Give your body the best chance and maybe you also will live a long and largely event less close to normal life span. Ask any questions you like.

Have you found out what geno type you are yet?

[Mostew]

Sorry to but in , but different ways of eating suit different people. For me it's a mainly organic , gluten free very low sugar , Mediterranean way of eating . Which does include a nice organic red wine (only a small glass )

Quinoa , buckwheat , rice , etc all good carbohydrates.

Sounds like you are doing amazingly well on what you are doing .