Some final tests must still be done on my blood but it seems my diagnosis is ET. 48 years old male. It was a shock I must say cause I was healthy all my life. I am exercising regularly. I was quiet a drinker and smoker and I think those days are definitely behind me. My platelets are around 600 atm. I am taking 100mg of Aspirin a day atm. Can someone give me some stories from your experiences with this disease? What can I expect? What I can and what i can't do? What is an average life span and quality of life? It definitely is a big twist in my life.
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Myers75
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hi I was diagnosed in aug last year so still new to my ET. I’m on 500mg a day of hydroxycarbamide. And clopidogrel blood thinner my symptoms were extreme fatigue. Itch skin and blood in urine constant utis. Had bmb in March to confirm ET. You might go on a watch and see. Route as you are young I’m 68 hope this helps don’t worry too much. This forum is the best good luck on your journeyx
I think you are like most (all?) of us when first diagnosed: freaked out. But it’s going to be okay. Life expectancy is normal with ET if it’s treated to keep us from having a stroke or heart attack from clotting. I was diagnosed in 2017 and have taken hydroxy and blood thinners since. I do everything I did before and have had no issues other than possibly slightly thinning hair (but that might be just me getting older.) At the beginning I had some itching, mainly underarms, but that happens rarely now. Same with night sweating. I’m physically very active - run, walk, hike - and do all that still. I bruise like crazy from the blood thinners but I’ll take that over thrombosis. 😊 People have different experiences with the disease and the meds but you’ll find lots of people here with good advice from personal experience - many over decades. This is a great forum to belong to. Ask your specialist doc tons of questions if you have them.
Hello and welcome to the forum. This is a great place to find support and information.
I was diagnosed with ET about 30 years ago. It progressed to PV about 9 years ago. Now age 67, I have lived a good life and continue to do so. While there have been some challenges along the way, some MPN related and some not related, these challenges have all been managed successfully. My quality of life is very good.
There is a lot to learn about MPNs. Much has been learned in recent years. the good news is that you will have plenty of time to learn it all. Here are a few key facts to get you started.
Emmyroos is correct that you can plan for a normal lifespan. You are more likely to die with Et than from it. It s a chronic disease that needs to be managed, much like diabetes. That is not to say that there are not issues to manage. We must prevent thrombosis, hemorrhage and microvascular issues. There are also secondary symptoms that many encounter like fatigue, itching, paresthesias and more. Many of these symptoms are related to the overproduction of inflammatory cytokines that is part of MPNs.
One very important thing at this time is to consult with a MPN Specialist. MPNs are very rare disorders. Most doctors have very little experience with them, including hematologists. Optimal care requires input from a doctor with MPN expertise. Here is a list. mpnforum.com/list-hem./
There are excellent resources on-line for MPNs. Be cautious with random Googling as that can take you down some rabbit holes best to stay out of.
I think our diagnosis comes as a shock to most people, not least because most of us don’t have major symptoms that led to this and also we’ve never heard of it, nor can we easily spell it! 🤣
I was diagnosed with ET 5 years ago aged 37, there is little information out there that helps those of us in the younger demographic, o certainly questioned is a ‘normal life span’ the same for someone diagnosed over 65 (which appears to be more the ‘norm’) vs someone diagnosed in their 30’s / 40’s.
I’d recommend reading the information on MPN’s on the MPN Voice website and also Leukemia Care website, both have some helpful information. There are also some great Facebook groups where you can ask for advice and support too, I found these really useful.
Didn't really change my life much at all. I have sensitivity to sunlight, so I wear sunscreen, and sunglasses. It affected my hair, nails, and skin, but not much else. Since you are a guy, those things won't be as much of a bother to you. I take Hydroxyurea, 500 mg. once every other day, and it keeps it under control. Good luck, and don't worry.
I was diagnosed in Aug 2022, and it was a shock to me too, as I had no symptoms at the time., and sn a very healthy active person. But in retrospect, I see now that the occasional brain fog I had for the past year corresponds to the time my blood counts were high.
It took 4 months for my platelets and Hct to gradually return to normal on Hydroxyurea 500/day. Once my numbers were normal, I no longer experienced brain fog.
I have a wonderful hematologist who wisely write me an open ended order for CBC every two weeks as needed, so that I could follow the progress myself. She said I could be in control of deciding when I needed to see my blood work. Now that I’m at 5 months and stable, I feel good about reducing the CBC to once monthly, and can even see going to every 2-3 months if this normalization continues.
It’s scary and overwhelming. A lot of folks on this forum have disease that has progressed. But that is not the norm. For most, it’s a chronic condition that has to be managed the rest of your life.
Good luck with your journey. Glad you found the forum.
Wow. Thank you all for the warm words of welcome. Surely it will take some time for all the thoughts to settle down but surely this was kind of a wake up call cause I was kind of abusing my body for some time now. Its time to start making some wiser decisions. What about alcohol? You guys sober or keeping it in the healthy numbers?
I decided to cut it out 4 years ago, for a number of reasons, I was trying to loose weight and figured that I didn’t need it and also I have a kidney disease so it’s not the best anyways! But there’s no reason you should cut out anything, it’s a case of everything in moderation!
I definitely still drink alcohol - wine mostly. I don’t smoke and am very active with exercise. Basically, other than the bruising from blood thinners and keeping out of direct sun (or using lots of sunscreen) because the hydroxy makes us more susceptible to skin cancer, my life post-diagnosis is the same as before.
Hi, sorry to learn you are so anxious about your diagnosis. Like many have said already we all get a shock because we are 'not ill'. I had no symptoms but I went for a free NHS health check and boy am I glad I did. So my ET was first highlighted from the health check and of course further tests followed to confirm the diagnosis. I am 64 years old and very active, none of that has changed. I have been on Hydroxycarbomide and clopidogrel for nearly three years. My hair has thinned which is the most upsetting thing for me, I had lovely long blonde curly hair and this is my daily reminder that I take some serious medication. But I pull on my cycling kit and head off and do a 40 -50 mile bike ride three days a week, go to the gym, attend fitness classes, walk regularly, ride horses and meet up with friends for coffee and cake. I do sometimes have 'melt down' days but they soon pass and I get on with life. Symptoms vary between us, some have fatigue and itching and if we take Hydroxy we have to be careful with our skin as it increases the risk of skin cancer so I use factor 50 sunblock all year (I get this on prescription and also vit D to counteract the reduced absorption due to sun bloc). Once you get over the initial shock your life will return to normal. Best wishes.
Hello Myers, welcome to this group. I know it's a big shock when you are first diagnosed and your mind works overtime taking everything in, it's very stressful, but in a while you will be able to put your ET on the back burner and get on with your life.I was diagnosed with ET when I was 27 nearly 30 years ago and have gone on to get married, have 2 healthy children and continue to ski, play tennis regularly and remain very active.
As Hunter says it's very important to see a specialist, as what we have is very rare, to make sure you have the best possible treatment for you.
I wish you luck with your journey and we're all here should you have any questions meanwhile. Hope you have taken a look at MPN Voice which has some very useful information. Try not to panic too much and I know it's easier said than done!
Hello Myers. I was diagnosed with ET blurring with PV nearly 5 years ago. I was never a big alcohol drinker before but now find (since starting Hydroxycarbamide now I’m over 60) I cannot tolerate it well. I can have a couple of units but any more and I feel quite strange so it’s just not worth it. I still enjoy a glass of wine with dinner a couple of times a week and am starting to enjoy some of the non alcoholic gins that are on offer now!As a consequence I am now always the driver! Here’s wishing you Good Luck with your journey
Firstly big hugs. It sounds scary but is really about controlling it like one would do with diabetes. They may do watch and wait with regular blood tests and aspirin at first starting treatment later. Meanwhile, when you are ready, look up different types of treatment. Main ones are pegysus which I am on and hydroxycarbamide. We are all here to help and answer any questions you have
Your post is very similar to my initial post here over 3 years ago. Similar age, similar blood count, similar background (smoking & drinking) & an ET diagnosis.
Whilst ET is categorised as a “cancer” & “critical illness “. (If you have critical illness insurance it’s claimable) I’ve found it’s nowhere near as bad as what it says on the tin.
It’s not really affected me much at all life wise. I do get a little bit of fatigue here & there, a bit of tinnitus but it doesn’t really have any big effect on my life.
I’m currently taking baby aspirin & interferon.
You’ve asked about drinking & whilst we all tend to cut down as we get older I’ve not stopped enjoying a few pints & glass of wine, I guess I just moderate it more & only do it once or twice a week. Smoking is a definite no (I gave up about 20 years ago) but We all know how dangerous that is (even without an MPN).
The general rhetoric regarding life span is that we live to a normal ish life expectancy. This is probably one of the more tricky aspects of an MPN. It focuses us on “how long have we got left” & “will it progress to anything else” I’ve chosen to try not to worry too much about that aspect (admittedly easier said than done) and just try & live my life as best I can. If nothing else, it gets you thinking about life span in general terms & that can be a positive as it helps you to focus on the good things in life & often enjoy them more.
If you need anything our fellow MPNers on here are always up for support & assistance so make sure you stick around & as your journey progresses you too can assist & support others - as I’ve always tried to do since my diagnosis.
Oh, I forgot to mention something very important; If you choose to carry on enjoying alcohol (in moderation) then it’s massively important to make sure you have water or squash. EG if I go to the pub I have say 2 pints & the third drink is a pint of blackcurrant/lime cordial. Then I might have another pint of beer. I can’t emphasise that enough. You’ll find what works for you. Alcohol, as we know, causes dehydration & dehydration with MPNs is not good at all.
Very good that you found this group - you will find a lot of support and good information. I would recommend finding an MPN specialist (if you do not already have one) that will hopefully work with your regular doctor/hematologist - MPNs are fairly rare conditions and having someone who is very familiar with the disease; the most recent/up to date treatments and common symptoms - an MPN specialist can make all the difference.
I was officially diagnosed at 47 after a bone marrow biopsy but had been instructed to take a daily baby aspiring since I was 42 due to high and rising platelet count. Was on aspirin and watch and wait for 3 years before starting with cytoreduction (first Hydroxyurea and now Peg). Can say that I have been fairly fortunate to not suffer many symptoms - once in a while fatigue and sore bones/muscles (used to have "hot and red" hands and some night sweats before starting treatment )
As I was having some liver issues with the Peg (hopefully now resolved) I did cut down on my alcohol consumption. I have also found that my body doesn't tolerate alcohol the way it used to, especially wine..
Continue to exercise 6 days a week; work full time and help raise 4 kids - so in general life moves on with little or no changes. My MPN specialist has stated many times that I am much more likely to die with ET than due to ET so I try to treat myself right; help my body where I can and just keep moving forward.
Hiya and welcome to this amazing forum. My life saver and stress reliever due to amazing supportive folk.
I have just been diagnosed in June 2022 with PV but already starting to feel better on treatment regime of aspirin and venesections.
To put your mind at ease, a positive story: My best friend was diagnosed with ET at the age of 21yrs old and is now 52. She is doing great, living life. Yes, it is a challenge, and something we all have to navigate for hopefully our long lives. Key is good medical team, an MPN Specialist if you can get one in your area and educating yourself and your GP.
The advice of Project Managing your own health is the best advice I was given. Be well informed and versed on your ET. It takes time, wheedling out the old info, misinformation but folks on here will keep you right.
Set up email folders to save relevant info to go back and read again.
You have time, lots of time to learn about your condition, how you feel, your symptoms so try not to rush the learning. There is a lot.
There is light in this tunnel, not just at the end of it. So much research going on, changes are coming bit by bit.
I can fully understand your concerns. I was diagnosed with ET and Jak2 positive January 2022. I am 62 … No one explained to me what this really was apart from I found myself in the cancer department with no explanation 😉
I found this forum and thankfully I did, it’s full of the most wonderful people, all who have experience of these MPN’s and will definitely help answer your fears and questions.
I have been on Hydroxycarbamide and Asprin daily and after experiencing some side effects I now take it at night which works much better for me and has definitely helped . It has made my life so much better as I was suffering with dizziness and fatigue also and now have a much better quality of life
I wish you all the very best on your journey and although easy to say (when you feel worried) I know, please try look ahead to a normal and happy life
Hi Myers - there has been some constructive thoughts & comments regarding your diagnosis - take the docs advice & take comfort from the comments. I am fairly new to my diagnosis of ET too-2 years now & doing well so far on the standard Hydroxy, aspirin & Statins too. Lots of luck!
Sorry to hear you have ET. It is quite a shock in the beginning, but it is not a death sentence. Surely it is no benefit for our prognosis, but there is good chance you will die of something else than ET.
You did not say whether you were diagnosed with JAK2-mutation. That is something which affects your prognosis too. But even with JAK2, we can do a lot to help ourselves by adopting healthy lifestyle. Exercise, no smoking, treat blood pressure and cholesterol, etc. Use blood thinners and avoid obesity.
Unfortunately many doctors don’t know much, so better seek for an MPN specialist, like Hunter recommended above.
I was diagnosed almost 2.5 yrs ago at 51 with ET but within a few months the reds started to run ( really had PV) and I needed my first of many phlebotomy treatments. I was on watch and wait for over a year and baby aspirin also. I started Pegasys interferon injections weekly and after a few months all my blood has returned to normal levels, brain fog has lifted and I feel amazing. I was advised by these wonderful friends on this chat to get an MPN Specialist which has been wonderful and made such a difference.
I plan on living a long full life with this crazy diagnosis in the background not running the show. Look at eating well, exercising of some kind, and lots planning for a long and happy future.
I find the story of Dr Terry Wahls and her battle with MS very inspirational. You tube her or listen to some podcasts about her diagnosis and remission. Fascinating, these body’s we have! Good luck on your health journey ❤️
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