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MPN Voice
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ET symptoms

People post all the bad experience or said they are very sick with ET and all these sounds very scary. I wonder if any statistic on how many people actually has no symptoms or minor symptoms only. This can give us a better understanding on how serious the symptoms from ET in affecting us so we can well prepare or try to prevent as possible.

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I could be wrong but I think people tend to post more when they are experiencing symptoms so it seems like everyone with ET has them. I don’t have any of the fatigue, etc that seems to plague some. I have seen people post on here, like Maz the site administrator, who’ve had an MPN for a very long time, with no symptoms at all. I’m hoping others will weigh in on this.

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I do sometimes get symptoms of fatigue and dizziness, but very rarely now, once I started on Hydroxycarbamide they became less frequent, just get the odd spell now and again, the majority of the time I am symptom free and getting on quite nicely, I have had ET for 16 years now and Hydroxycarbamide for 12 years.

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You are soooo lucky! Thanks for all you do. P.x

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It is good to know. I think some new ET friends joining the group are eager to learn what others are doing to help the disease. For those that hv less symptoms or doing well, they should also share their experiences. That would help to send positive message and help them. Thanks

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Yes.

We all need to get constructive experience for helping us to plan our life. Thanks.

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I agree that most people post when they are not feeling well. In my own experience I was diagnosed at 52 in 2006 with platelets over a million after a routine physical. I was on hormone replacement and had never felt better in my life. I had not had bloodwork done in 5 years so likely had ET for years before diagnosis. I started baby aspirin immediately then HU about a year later. I had no symptoms before HU and the only symptom after years on it was fatigue due to anemia. ET was just an inconvenience with monthly bloodwork and hemo appointments. I was still very active and golfed walking and carrying clubs 3-5 times per week. After 12 years on HU it stopped working and I switched to Anagrelide last fall and have many complaints and symptoms but these are from the drug not from ET. I did not even know these forums existed for the first 12 years after diagnosis but once I began to feel so sick with Anagrelide side effects I started researching and posting.

I encourage anyone newly diagnosed to be optimistic that they will be symptom free. It’s important to find the right medication, which might be just aspirin, for you and a hematologist you have a good relationship with.

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I was diagnosed with ET nearly six years ago now, and found that once I had been on Hydroxycarbamide for about a year my symptoms had all but disappeared even my platelets have gone back to normal and still are.

I found that by doing exercise daily, drinking plenty of water and eating well has helped me immensely.

Ok I might get the odd bout of fatigue and funny dizzy spells but even these are few and far between and seem to happen if I get stressed about something, so now I avoid stress and getting over tired and it seems to work.

So where as before my health was naff!! Now I can honestly say my life has improved thanks to Hydroxycarbamide.

Jean

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There have been a number of surveys about the frequency and severity of symptoms experienced by patients with different diagnoses of MPNs. And it is very true that although symptoms like fatigue are very common they don’t affect everyone and where they do they can be quite mild and have minimal impact on people’s lives. Forums like these are often quite self selecting and people tend to turn to them when they are anxious and have questions and maybe aren’t feeling so good. People don’t tend to post if their disease is having no or little impact on their day to day life (much like the daily news!!).

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I can't find any survery about this and always wonder the ratio of serious symptoms to mild/no symptoms. Looking at groups just scare those they are new with the disease. I think it need to post some positive and great experience to help the new ET comers to understand that disease is not the end of the world.

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Every time I experience a different symptom, I tend to ignore it until I convince myself I'm being silly. At that point, my specialist nurse (without fail) tells me it's nothing to do with the ET/JAK2+ and I should see my GP. The fact is, the doctor knows nothing of this condition or whatever so I don't bother. Usually, in fact to date every time, it will come up on this site as something experienced by another with my diagnosis and I will identify the source.

Outcome, stop asking the nurse (gave up on the haema long ago) because nobody in that clinic knows anything about this condition. Nobody! Happy to be alive. Hugs all round for you all who keep me informed. xxx

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There was a very detailed international quality of life study of a great number of patients with MPNs that was published in 2017. I haven't got it in front of me, but I do remember that roughly 65 percent of people with ET experienced fatigue to some degree... which also means that 35 percent do not. Other symptoms were covered by the study too, as were things like ability to continue working full time or part time, needing to take early retirement and so on. The study is quite technical, as these things are, but here is a link to it that I hope will work

ncbi.nlm.nih.gov/pmc/articl...

I actually found the study quite a comfort when I read it, because it helped me make sense of where I "fitted" in the bigger pattern of things with my own symptoms and difficulties that I had with work.

One thing that did occur to me though when reading your question was that it is so much better to try to live our life each day as the hours and moments are given to us, rather than worrying or preparing for a future of symptoms that we may or may not experience. This may seem a bit careless or simplistic of me, but enjoying the moment rather than worrying about bigger things has been a real challenge for me and it has not been easy to do.

Things that help me enjoy the "moment" and free myself from thoughts that go round and round in the head are, walking with my cat in the morning. Savouring the smell of baking bread... or fruit cake if I'm lucky! Making a pot on a potter's wheel and feeling the clay respond to my fingers. Standing outside just before the sun rises, and feeling the chill air on my face. Taking off my shoes and socks and really feeling the ground through my toes....

Kind Thoughts,

Peter

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The report still too focus on symptoms

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You are so precious Peter. Thank you for your inspirations. P.x

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I was diagnosed last Oct - but my blood tests show I’ve had this for 4 yrs. I have no symptoms whatsoever and crossing fingers I stay that way. I’m ET JAK 2 +, 62 and on aspirin only. I am very fit - work out every weekday - and on a ketogenic diet though.

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What is your platelet?

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I’ve had various results from 700-850. I go up and down. I do think I had higher results when I was first diagnosed and very stressed over it.

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But 62 classified as high risk and should take med other than aspirin.

But I think your message encourage people that symphton may not happen and just stay health. Thanks

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I guess it’s all relative? I’ve also had a second opinion and both haematologists agree that all I need is baby aspirin.

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I think you have a healthy living style and positive attitude which help you a lot.

Great to hear at 62 only need aspirin.

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People post there bad symptoms on this forum because there are other people experiencing similar problems and need someone to relate to as I did myself. I have been diagnosed for 7 years and been mostly symptom free until a couple of months ago when I became very tired and had an ulcer. I dont know if this was due to my et as I did not get an answer from my doc or from the heamo nurse, which is why I use this forum. I am back to normal now and doing my usual 5 mile walks 3 times a week. I am just very grateful that I have a cancer that is treatable although lifelong.

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Yes. Some symptoms may not really relate to ET.

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Hi. I was diagnosed with ET at age 44 at which time I had 4 boys aged between 6 and 12. Life was extremely busy and I used to put ET on the back burner and just get on with being a mum. Looking back there were times I got quite tired but I think I used to put it down just to my busy life. The big difference then was that the internet was in its infancy (I’m now 70 this year) and I was therefore not able to scare myself with the potential complications of ET. I just took the tablets - HU - attended my appointments and got on with life in general. I think there is a the potential now to read everything there is on the internet and worry about everything that might happen. Even now I have progressed to post ET MF I am still buying perennial plants and looking forward to my youngest son’s wedding next year. I have to admit I felt a bit down last year but this year I have taken control again and lost weight and tried to walk more.

Try not to worry about what MIGHT happen and enjoy life day by day

Best wishes, Jan

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I think this forum needs more such encourage message so the young ET friends can receive positive comment to plan themselves. Thanks

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Hello yes I have taken hydroxycarbimide for nearly a year and have no symptoms .I try to walk and keep active. I would support anyone preparing for the diagnosis of ET and say don't despair. It seems well managed we can stay symptom free for years. I have also loved the support and social side of joining everyone with the same problems.!!!

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That is a good share.

Many ET friends need encouraging message. Thanks

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I have prefibrotic Myelofibrosis but have no symptoms other than high platelets and a bit of nighttime sweating and tingling in my legs - but nothing that would have ever indicated I was seriously ill - random blood test showed platelets of 1600.

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What have you done in changing your living style to help the symptoms

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I was just recently diagnosed with ET (Jak present), and have what I call no symptoms. Sometimes I get fatigued but it could just be lifestyle/stress related and not related to any ET at all.

I do very rarely have dizzy spells (maybe every couple months), but nothing major.

I’m 29, had platelets over 1 mil.

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I think with the situation of no symptoms, we should figure out how should maintain the no symptoms going fwd including diet or life style change.

This is the goal we should drive or share with others so can learn from each other how to build up a stronger body and remain no symptoms.

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I am 69 years old and take only aspirin for ET Jak2+. I have very little if any symptoms of ET. I exercise every day that I have time - bicycle or treadmill. I think I get the winter time depression thing but feel much better as soon as I can get outside in the sunshine- recenty started feeling pretty good. I occasionally get a little tingling in my hands mostly at night when it happens, don't notice it during the daytime, I am also a type 2 diabetic so don't know what is causing that. My platelets (in looking back over the years) began rising by about 20 to 30,000 per year starting in 2004. It was never mentioned to me until Nov 2017 when they hit 550,000. Had BMB in 2018 and the diagnosis was ET Jak2+. I agree that it is helpful to also hear from people who have had these diseases for a long time and are doing well or relatively well - gives us some hope. I also think it helps to know a persons age and their diagnosis as well as how long they have been diagnosed. Thanks for the post. May you Live long and prosper.

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I agree sharing more on how to maintain the plate count is very beneficial to those that are new at ET. Most of them feel anxious once they know they hv the disease

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I am one with lots of symptoms but no official diagnosis. Currently awaiting results from my second biopsy and hoping to get some. Doctors presume I have ET because my platelets have been elevated for 13 years next month (we’ve only known for almost 3 years) and we can find no secondary cause for it.

I’m trying to persuade the doctors to let me try bringing my counts down with medication to see if my symptoms ease at all with treatment. My quality of life is greatly impacted. Their concern is that being young I could burn through my treatment options and become intolerant. Having watched my father pass on two years ago from early onset Alzheimer’s, I see things differently than my doctors do. Quality of life matters.

Currently I force myself to do regular low impact exercise, I drink plenty, get plenty of sleep, watch what I eat. I do everything in my power to help myself and it’s not enough unfortunately.

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Do you mind to tell how old are you

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41.

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I had ET (JAK2+) for nearly 30 years with virtually no symptoms, other than elevated platelets. At some point (about 6 years ago) the ET progressed into Polycythemia. The only significant symptom I ever experienced from the MPN is secondary hypertension and mild splenomegaly. Since I started the phlebotomies my blood pressure is great! Had to go off the hydroxyurea as I am HU Intolerant. The HU actually gave me more problems than the PV did (compromised immune system- thrush, mouth ulcers, compromised intestinal endothelium - chronic constipation-flatulence). Went to see a MPN specialist, who had me do the JAK2 Quantitative Analysis. Turns out my mutant allele burden is on 25%. Doc was very clear the HU sanitizing the blood numbers was not worth the risks (mutagenic-carcinogenic-leukemogenic). This is all a long-winded version of saying all of us with MPNs are affected differently. Factors such as the JAK2 allele burden, non-driver mutations (e.g. TP53) impact the course of the MPN. Some struggle with much more difficult symptoms than others. The treatment regimen is unique to each individual and what their profile is like. The research that is emerging is very informative regarding the role the increased cytokines plays in secondary MPN symptoms, how the risk of thrombosis with leukocytosis may be worse than with thrombocytosis alone, etc. Most people with ET will live a full life span, though may or may not experience quality of life issues. All the best to you on your journey.

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30 years and no symptoms. That is amazing. Do u mind to share more how u keep 30 years well.. especially did u take any med? Diet? What did u change to keep it good for 30 years? What is the range of platelet in this 30 years?

Thanks. Like to learn from you

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I started off on HU when diagnosed 30 years ago, but the hematologist took me off when the treatment protocol changed. Went with aspirin-only for most of that 30 years. Most of the time my platelet levels cycled between low 500s to low 600s. About 6 years ago I had severe gastro-intestinal inflammation which triggered a reactive thrombocytosis that pushed my platelets up to high 900s. Back on HU for about a year until platelets re-stabilized. The hematologist missed the fact that my MPN had progressed to Polycythemia at this point. Just found that out after a surgery in January 2018 triggered another bout of reactive thrombocytosis. Another year of HU, which turns out per the MPN Specialist I finally went to see was not the best approach for me. HU benefits not worth the risk for my profile. Having said all of that, a couple of recommendations. 1. Make sure to find a doc knowledgeable about MPNs. (I have a new hemo + consulting MPN expert). 2. Don't assume the "standard" treatment protocol is right for you. We are each different and the nature of our MPN can require an individualized approach. 3. My light symptom load is mostly genetically driven. JAK2 allele burden = 25%. Get the quantitative analysis if you have not already. 4. MPNs can come with troublesome secondary symptoms. Many of these appear driven by increased inflammatory cytokine load per current research. Controlling inflammation is hugely helpful. Turmeric/Curcumin worked wonders for me. Note: Decreased inflammation can also result in decreased platelets. 5. Maintaining good overall health is really a key. Keep off the extra weight, exercise regularly, eat a healthy diet, keep your immunizations up-to-date, etc. 6. Maintaining good mental health is just as important. The mind-body connection is real and powerful. Managing stress effectively, dealing with anxiety in a healthy way, and maintaining a positive attitude will all go a long way to promoting a long and healthy life. All the best to you.

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Thanks for the comment.

Great to know many are staying well.

Keeping stable at 500 and 600 for such a long period of time is really amazing and is something we should learn.

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Hi I have had ET for 7 years (disgnosed) only on aspirin and pantoprazole for the acid from the aspirin!! Platelets vary from 600 to 700s so lower than lots of people on here.

Get fatigue from time to time but feel I benefit when I exercise regularly, eat well and drink plenty of water. Feel the difference if i dont. Still working full time in a busy and sometimes stressful job though so I am one of the lucky ones.

I suppose for me if I consider something a symptom I'm never sure whether its ET contributing or not.....at my age everything gets put down to the menopause 🙄

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What age?

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I am 54

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I was diagnosed 3 years ago with PV and have had very few symptoms, before or since. I have been on hydroxy for 3 years and the doseage keeps varying, but in terms of symptoms, I'm very lucky

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Before PV, are you ET?

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I have only minor symptoms and some of those may well be due to age rather than ET or Hydroxy-carbonide (I am 73). There's nothing which really affects my way of life and to be honest it wouldn't have been spotted except for a routine blood test. I just hope it stays that way.

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How long you hv ET?

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I was diagnosed in January 2016 but judging from my platelet count it was at least 5 years earlier.

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I was diagnosed with ET 16 years ago and I’m pleased to tell you that I had no side effects at all! I have been anaemic forever so perhaps it became worse? I have been on various strengths of hydro again with no side effects and then onto anagralide again with no side effects. I had problems getting my platelets in a good place but no pain etc.

One of the pluses about et is that it hardly affects your life span.

Chin up there are a lot of us out here that are ‘lucky’.

🤗👍🏻

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Can I just add - I put the et to the back of my mind and just carried on - I had 4 children all at different schools and one of who has cerebral palsy. We have our own business and so I worked in the office and at home. I didn’t change a thing about my life and haven’t done since the beginning.

Please dont think I’m blowing my own trumpet, I just wanted you to know that for me there was/is no diet plan or exercise routine. My platelets have been stable for years now - between 325 and 425.

Xx

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So glad you are so positive. I felt exactly the same as you. I have had ET since 1991, since I was 47, 28 years now!! I have had a few issues lately but on the whole have carried on as normal. Platelets went out of control 7 months ago have been up and down and I have had a few issues, including a heart attack, lately but on the whole I have managed it well.

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Thank you so much for your reply. I’m so sorry to hear about your heart attack especially after no side effects for so long. I hope 🤞 you have not been left with any damage?

I’ve now progressed to myelofibrosis, had it for 4+ years now and I must admit I’m having to deal with the dreaded symptoms!!!

So conclusion? Don’t worry about side effects until they kick you - you agree?

Sue

England

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I agree with WileyFrench. I think that people mostly post when experiencing problems otherwise there is no need to look for help. But it is possible to find statistics of ET on the net. I have come across various things while researching.

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