MPN Voice
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Newly diagnosed with ET and wondering

Hello,

Recently diagnosed with JAK2+ ET, Platelets 480 to 550 over last yr. Does anyone recommend a specialist in this disease, live in southeast ohio near Marietta O.

Almost 70 yrs old, have read that disease has a worse prognosis and progresses faster in people over 60 yrs old, anyone able to share in info on age and progression and if it is more likely to progress to MF or Leukemia faster? Is it possible that this disease does not progress but remains static?

Also have read that Garlic or reservatol or tumeric may help lower platelet count, anyone have any experience with those or any other supplements that may help?

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Welcome meatloaf9 to our friendly forum.

I also have ET jak2+, diagnosed in early 2016. I have never heard that ET progresses quicker in older people. Also, the chances of ET developing into MF or AML are quite low percentage wise.

I am on aspirin and Hydroxycarbamide 500 mg which I take five days a week with week ends free. I feel fine, still work part time (I’m 62), and I don’t have any symptoms, so I count myself lucky.

I would be very cautious in what you read online. Always check the source. There are some sources which are unreliable in their information. Educate yourself as much as possible from trustworthy sites. MPN Voice in the UK, and Patient Power (MPN) in the USA are reputable sources. The latter may be more useful for you to research MPN Specialists near you.

Good Luck

Mary x

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Thank you so much

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Hi and welcome to the forum.

Like Mary I also never heard that ET has worse prognosis in older people, also rate of progression to MF or Leukemia is very low even after many years after diagnosis.

You can also check out MPN research foundation for some info

mpnresearchfoundation.org/E...

and here is a list of patient recommended MPN specialists, and there are a few from Ohio so you can choose one closest to you

mpnforum.com/list-hem/

Some people here are currently trying out turmeric, I have ET since 1999, tried all kinds of natural remedies with no result, and for turmeric I read long time ago that it is not recommended taking it while on blood thinners as it can increase the effect and cause bleeding, so I stick to aspirin for blood thinning and Interferon for antiplatelet therapy.

I hope this helps and feel free to ask if you have more questions.

Zlata

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Zlata, thanks for the reply and all the links to research, good luck to you also.

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Hi Meatloaf9,

I'm in the same boat - 68 and with ET JAK2+, diagnosed last year. It was a bit of a shock at first, but my hematologist soon got the the bottom of it and put me on hydroxycarbamide (HU in the States) and low dose aspirin which brought it under control very quickly, with zero side effects. As Mary said in her post, there is generally a very low risk of ET progressing to anything more serious - my specialist talked in terms of a 5% risk over a 20 - 30 year time frame, by which time I will probably have died of something else anyway! There is also a whole raft of fantastic genetic research into MPNs being conducted, so whereas MPNs today can be controlled rather than eliminated, I'm very confident that there will be massive improvements in the next 5-10 years, so the future is looking bright.

Neither ET nor the treatment plan have in any way impinged upon my lifestyle other than to make me realise there are plenty of nasties out there, so I try to live life to the full and make the most of any opportunities. ET is something I carry, but I refuse to let it define me.

ps. This forum is a great place to find support from people who really know what they are talking about because they have already been through it. There is no question that have about ET that someone here cannot answer. I have found it immensely helpful in increasing my understanding of MPNs.

Good luck buddy.

John

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John, thanks for the reply, starting to feel better already, I'm sure a positive attitude will help immensely, still trying to get there, everyone on this site is very helpful, thank you all so much.

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Hi Meatloaf,

Hope you are feeling encouraged by all the replies, this is such a friendly and informative Forum....a brilliant help! I am 77, diagnosed with ET Jak+ 5 years ago....haematologist tried me on all sorts of drugs, many of which people round the world take on a regular basis and are fine with....I did seem to react to everything, so now just on Turmeric capsules - very occasionally take a blood thinner, Clopidogrel, but find hardly ever need it now. Hospital monitoring me. Can see how well I am and how well I look and though platelets high, they seem to be the same each time. Also, was having blood tests every 2 weeks and now they are happy for every 6 weeks, which shows they are relaxed about it too. Send you very best wishes, Tinkerbell

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Tinkerbell13,

Thanks for your post, all the replys so far are making me feel a little better, quite depressed at first as I am sure everyone who gets this diagnosis is when they don't have all the facts. Thanks

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Can remember how scary and yes, how depressing, it was to start with...but nowadays, find just get on with life and most of the time, forget altogether about it. Obviously, every single person is unique and may have different symptoms (e.g. I get night sweats, but again, just learned to live with them). Also, like us all, you probably find there are, sadly, many people around who are in great pain from things like arthritis and ET is really very 'liveable with'....just wish had known this when first diagnosed, so do let us, on this Forum, cheer you on your way and say to you 'it really is all right' and you will find yourself encouraging others in the future and saying 'Actually, it is o.k.' Every blessing. Tinkerbell13

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Hi Meatloaf, sounds as if you should be singing a Bat out of hell 🤪

Welcome to the forum as you can see we are all a great bunch of understanding peeps, I to have ET JAK2 positive told nearly five years ago now and will be 69 this year. At first it was all very daunting thought I was going to pop my clogs especially when I was told I would have to be on Hydroxycarbamide for ever!!! All just really frightening at the time, now it all goes over my head, I will never let it rule my life I enjoy it to much. Plus my platelets are all normal, have been for the last couple of years.

I have changed my lifestyle, take a lot more exercise, eat lots of fresh fruit and veg, and drink at least 2ltrs of water a day, this helps flush any toxins through your body, now enjoy drinking water, oh!! and the occasional glass or two of wine.

As for ET progressing into MF/leukaemia much more quickly over the age of 60 not sure where you have read this but this is not the case, many on here have lived with it for many years and still remain very stable. So try not to do Dr Google, or Facebook, the MPN Forum is the best place to be where only the truth is told, and as you will find we are all in the same boat, and I think we sail it very well together.

The only person that might be able to give you information on any specialists in Southeast Ohio, would be our Administrator Maz, she is our oracle of knowledge on all MPNs well at least point you in the right direction.

So welcome Meatloaf, we have people from all over the world on our Forum, we are a very rare breed, and are here for each other no matter where you live.

Jean 😀

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