I am 52, a mother of a high school senior, and two in their early college years. Might sound old to some, but in my mind, I am hopeful of living long enough to see graduations, weddings, for my kids and grandkids! I was was diagnosed with ET in 2017, after several years of not feeling well and having raised platelets that showed up on blood tests, that were in the range of 450-600. My husband and I believe I had a small TIA, though at the time, the hospital thought it might have been a migraine. I have never had one since.
After battling a recent season of flu like symptoms, that have lingered for 2-3 months, I am just thinking it's a result of my condition. I currently take Hydroxy plus 2 baby aspirin. Though my platelets are not as high as others, I guess I am just more symptomatic. My oncologist is raising my hydroxy to two per day to help with the symptoms. I want to feel better so I can DO MORE with my kids and family.
Since my diagnosis, I was told "this is the one of the better cancers to get, with most living an average life span" However, during my appointment today, my husband asked how long my body might tolerate hydroxy? The Dr. said most people can tolerate about 10-12 years on it before need ing to try something else. Tonight I looked up average life spans of ET, and it still says - 10-15 years. Is that true? Is that the life span most of you all are hearing too? I was hopeful, God willing, I'd have 25 + ?? I know none of us are promised tomorrow, but after reading this tonight, I feel more anxious than ever. Looking for some great stories of those who have had ET for some time and they are doing well.
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JenngeetingR828
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Essential thrombocytosis is an indolent disease and has a good prognosis. The reported life expectancy of patients with essential thrombocytosis was as high as 33 years in patients younger than 60 years,
As most people are older when they are diagnosed, the average life span would appear shorter because elderly people sadly die of something else. ET, if well controlled, does not cause premature death and you can live a normal lifespan. As for Hydroxycarbamide, I was on it for 16 years until my haematologist switched me to Pegasys. I then progressed to Myelofibrosis, which most people don't. But even if you do, there are excellent treatments and people live with it for a long time.
Hi. I will start by saying I have no answers and and don't meet your criteria of having ET for 10-15 years. I will say I have the same thoughts/concerns as you.
I was diagnosed in 2015 at the age of 50. I was told that with ET I will have a normal life expectancy and likely die of something else. And while I don't think my doctor was untruthful, I don't think that he was quite right either. What I have learned (or think I have learned) is that in absence of progression, ET life expectancy is likely close to normal for many. But ET can progress to more life-threatening conditions (i.e., if ET progresses, the normal life expectancy may no be longer valid). The good news is that most of the time, as I understand it, ET does not progress to another state (e.g., sMF, AML).
And from this forum and other sources, I have learned two things (okay more than two things, but....)
1) Every person's situation is so very different. Different symptoms, treatment, different reaction to treatment, etc.
2) Things can change in a blink of an eye (i.e., ET is a chronic condition until it is not).
I worry daily that my ET will progress. And that my symptoms will get worse. I do try hard (so very hard) not to worry about these things. I get torn between digging my head in the sand and just not thinking about it; and reading/researching and being prepared in case things do get worse. I struggle with this almost every day.
Sooo...I am sure my post is completely unhelpful. Except possibly for you to know that so many of us are right where you are. Sometimes it helps to know you are not facing something all alone.
LT55 - Thank you for such a thoughtful response. It really helps to read about others going through the same thing. I think that with a T in the beginning for me, it was really hard to get diagnosed with something that initially felt so scary but that doctors and even acquaintances dismissed as not a big deal but when you’re feeling horrible and it’s such a change to your every day life it is a big deal, but you almost feel bad to say that because you know others have it worse. I think that in the back of my mind I kept telling myself that my life span would be normal and like I said before none of us are promised tomorrow, but to hear that the average lifespan continues to be 10 to 15 years is actually quite scary when you’re diagnosed so young. I often wonder if other people diagnosed with a T also feel like there is this perception that ET is not a big deal so to acknowledge, feeling scared or bad is almost shameful if that makes sense?
A couple of people on this thread are talking about worrying about progression from ET, about reading, researching and preparing in case you progress. Well there is absolutely no point in worrying and researching. We are all different and, apart from keeping fit and eating healthily, how can you prepare?You mention the alternative of burying your head in the sand. Well that's what I did and I don't regret it for a second. How I would regret it now if I had spent nearly twenty years of my life worrying. As it was I had a wonderful, near normal life despite ET and only had to think about MF when it actually happened (and for most people it doesn't).
I believe that many people have the problem of anxiety rather than ET itself being a problem. It's no doubt harder not to worry if one is very symptomatic, but it is the symptoms and the anxiety that need treatment.
Don't ruin the next 30 to 40 years worrying about a fairly unlikely outcome. And if you and other worried patients do progress to MF, treatment is improving all the time - it's not an instant death sentence. I and many others are still here!
My husband had PV 10 years ago then 3 years ago he progressed to post PV Primary MF . We don't worry about the future as we still do everything we used to do .He was on hydroxy this was fine at first but it made him iron deficient and he couldn't cope with the extreme fatigue and exhaustion.
He's on ruxolitnib has been for three years and all his bloods are now in normal range .
He does suffer from anxiety think it's more work related stress than his illness.
He takes a baby aspirin per day .
He is 50 years old now and works full time .
Hope you get sorted there's lots of medication out there now and these MPNs can be managed with medication.
I was diagnosed with ET about 30 years ago. It progressed to PV about 9 years ago. Now at age 67, I have been living a good life and continue to do so. As I have aged, there have been more challenges (both MPN and non-MPN) but these challenges have been managed.
It is a truism that you are more likely to die with ET than from it. With proper treatment, most people with ET can live a normal lifespan. That is not to minimize the potential issues, but bear in mind than many never see the more serious manifestations of ET.
Not sure what flu-like symptoms you are experiencing. It can be tricky to figure out which of your symptoms are the ET, which are an adverse effect of hydroxy, and which are unrelated. MPNs can cause chronic fatigue. Hydroxy can also cause asthenia (fatigue) and dyspnea (short of breath). Sometimes timing is the only clue as to what the cause is. Suggest you review the information about hydroxy and review your situation. Note that adverse reactions are often dose-dependant. While some people find a higher dose helpful, others find that it makes symptoms worse.
Migraine and TIAs ar both associated with ET and the other MPNs. This would be a concern and something to try to prevent. Perhaps this is why our doc recommended starting with cytoreduction at your age <60. There are two first-line treatment options in treating ET, hydroxy and Pegasys. Due to the risks associated with long-term use, many docs prefer to start patients under the age of 60 on Pegasys. This is an important decision to review with your care team.
Note that we are all different in how we respond to these medications. I have done much better on the interferons (Pegasys/Besremi). The IFNs are more effective and much easier to tolerate than hydroxy. You will find others with MPNs who do fine or better on hydroxy. We really are all different.
You may find it helpful to review your care plan with a MPN Specialist. Most hematologists/oncologists have little experience with MPNs due to how rare they are. Optimal care requires consultation with a MPN-expert doctor. Here is a list.
There is a lot of nuance needed to review the literature on lifespan with ET. The most that can be read into them is statistical projections of tends in the population of people with ET. This is not the same as your individual prognosis. Many of these studies lump people with ET from various risk groups into one population sample. Your prognosis is something that must be individualized and is best reviewed with a MPN Specialist.
I have raised two children, now age 37 and 40, and have a 12-year old granddaughter. I have lead a rich life and continue to do so. I am responding very well to Besremi, one of the newest MPN treatment options. I am maintaining a complete hematologic response and may be moving towards a molecular remission. Our treatment options for MPNs have improved greatly and continue to move forward.
Please plan for a successful course of treatment for your ET. Plan to enjoy your life and look forward to being a grandparent someday.
hi Hunter5582 - such incredible wisdom and insight that you shared. Thank you! I will spend time
Reviewing the links you shared and will look into getting a MPN specialist perspective. At a high level, I respect all your input and shared perspectives.
When I was diagnosed, it was because I was constantly feeling what I called - nonproductive flue like symptoms- bc I would never progress to a horrible flu.. I would instead just always feel like I had it about to start… achy, sometimes feverish, high fatigue.. it’s awful because I am the personality that struggles to sit still. I used to run 30-40 miles per week, take high impact classes at the gym.. I enjoy being on the go! This was stopping me in my tracks.. and I couldn’t kick it! When the blood tests revealed the JAK2 on top of the high platelets.. it seemed to give my Dr. something he could point to.
The choice to start hydroxy was to help the symptoms.. and at first it did. Now it seems like it’s not as effective and the same side effects noted by the drug… happened to be the symptoms I was already experiencing.
Also, without the Hydroxyurea, my platelets rise and then I have added symptoms
Of numbness/ tingling in my limbs and sometimes face.. it’s weird! Anyway.. I’m praying for something to help. I am determined to find a way to heal some of the aliments /symptoms in 2023! I just found an acupuncture Dr.. and am also trying hard to lose some of the nearly 50 lbs I have put in since being diagnosed.
Thank you again for all the references to read and most importantly .. for just sharing your story and time with me. God bless!
Thank you for your kind words. I have been blessed to have a more indolent MPN, a wonderful care team to help manage the MPN and the support of the wonderful friends here on this forum.
It does sound like you are having multiple symptoms potentially associated with the ET. There is so much more to what the JAK2 mutation does than make our bodies make too many platelets. The JAK2 mutation also causes our bodies to make too many inflammatory cytokines, which is thought to cause many of the secondary symptoms we experience.
If you are interested in pursuing complementary health approaches like acupuncture, suggest consulting with an Integrative or Functional Medicine Doctor. These specialists take a somewhat different approach and are more knowledgeable about both complementary health approaches and Western medicine. I have an Integrative - Functional Medicine doctor on my care team. She had been very helpful, particularly in managing systemic inflammation. Here are a few links about these docs.
yes at this point, I feel like I am open to exploring several reliable options that could make a difference in how I feel. I just want to try to get back to some sense of feeling good again instead of battling every day feeling like I am 10 times behind the eight ball. I appreciate all the links and recommendations thank you thank you.
I wanted to wish you a very happy Christmas and a healthy and peaceful New Year. I hope you are keeping well and get to see your little granddaughter over the holidays.
I am still off the meds for the time being and feeling great. Long may it last eh!
Thank you for all your help, patience and understanding this year,.
A Very Merry Christmas to you too. I am looking forward to seeing my daughter and granddaughter for the Holiday Season. It is a wonderful time to have with family.
Hope you find a suitable plan to successfully manage the MPN in the coming year.
Wishing you Peace, Grace and Joy in the coming year.
In my mind, 52 is still young. I was actually diagnosed with ET at age 52, but that was in 2008. I progressed to MF around 2017. I’ve also been taking hydroxyurea on and off the whole time. It wasn’t until I found out I progressed that I started to really worry about my life expectancy. There is so much research in the last 10 years that who knows what’s gonna happen with ET and the other MPNs. Try not to worry and live your life the best you can.
52 is young ..right?!? I feel the same. Thank you for the note, for sharing your story.. and reaching out. Sorry to hear you progressed to MF, praying you get healing and recovery ❤️🩹
I've had ET for at least 10 years and am doing well! I'm a young patient too (in my 30's).
I highly recommend doing some lifestyle changes, which could help your flu symptoms. As mentioned above, inflammation has been linked to symptoms, progression, blood clot risk/numbers. Inflammation is something you can positively impact through your lifestyle. For instance, really focusing on sticking to and eating a "mediterranean diet" or real foods, so fresh/frozen fruits and vegtables, legumes, nuts, whole grains, healthy fish, etc. Cutting processed foods, foods with added sugar, etc. Drinking lots of water. Reducing stress in your life through things like meditation, changing life priorities if you have to, to focus on health...people on this forum, along with some [limited] research, have shown that these steps can make a difference, and give you a sense of control, which can feel good. I have definitely seen improvements myself!
hi Lucy2022 - thank you for sharing your experiences! I feel like these first nearly 5 years .. were somewhat of a blurry mess. I was transiting through 3 jobs plus two kids graduating during Covid, all while navigating this diagnosis and a life that didn’t seem to be slowing down. I feel like my diet and exercise had been great … until I started feeling so poorly and seemed to struggle keeping up with my workouts /gym time. The weight started coming on fast.. and the fatigue. My crutch had been Diet Coke- horrible I know.. but I am not a coffee drinker, but am a fan of caffeine in the morning and afternoon lull.
This last year my symptoms have been worse.. forcing me to really look at diet and physical activity. I started seeing an acupuncturist this week to help with night sweats, lack of sleep and leg pains. I also asked my oncologist about taking Tumeric and will start that too! Praying I get on a better path before then of the end of the year!
Sorry you were diagnosed so young! How did they find it? Are you taking anything or just being monitored? Sure encouraged by your tips! Thank you!
Sounds like a lot the past few years! That's great you're looking into diet and lifestyle changes. I wonder - if you like green tea (maybe with honey if you enjoy some sweet flavor), that could be a good option to get caffeine that also provides healthy things like antioxidants. Just wanted to share in case it's an option you haven't thought of yet! There's also a good amount of discussion on this forum about taking Curcumin (the active substance in Tumeric). It might be worth looking into. There's also some research into Curcumin and it's potentially positive/helpful effect on MPN's.
I have ET Jak2 and it was found randomly through blood tests where my platelets were out of range. Currently, I'm just being monitored, but I've been focused on taking steps to control inflammation through lifestyle changes. Since making these changes, I've learned what it feels like to actually feel good in my body! I used to almost always feel tired, like I was frequently getting a cold (but it never developed), etc....Currently, I feel the best I've ever felt! Thus, I've become a big proponent of these types of changes
I was diagnosed with ET at about 27 , and put straight on hydroxy and aspirin , and I am still taking it 25 years later. Historic blood tests suggest ET was probably there in my teens , just platelets weren't quite high enough for alarm bells.
I've lived pretty normally , with fatigue and susceptibility to everyday bugs my worst problems , the slightest cold is likely to have a flu like effect on me .
So hopefully all those graduations , wedding and grandchildren will all come true.
It’s so frightening when you find these facts on the Internet, some of which are quite outdated with all the new medications. As far as I am concerned most of us should lead a normal life span and as Hunter says die with it, not from it. Must keep it under control though. Have you looked into Pegasus? It has actually been known to put some people into recession. Stick the 10 to 15 years thing out of your mind and plan to live a good lifespan
thank you hope to help. I will ask my hematologist again about Pegasus. For some reason he might have felt like that had more negative affect but several of you have recommended it and it might not have the same flu like symptoms that hydroxy does. I think the problem is that those flu like symptoms are what I was experience from the gecko. They kept driving me back to the doctor year after year asking what is wrong!? Love all the positive on this community. 😉
Peg works for me. Hardly any side effects at all. Unfortunately not the same for everyone. Always worth a try. You can always go back to hydroxy if peg doesn’t suit. Good luck and let us know how you get on
Hello. I also have ET and was diagnosed last January. My doctor told me I could live 20-30 years. I am 74 so this works for me. When I was first diagnosed with ET I was so scared and unsure of the future. But, I have learned through this forum that we may have a cure in the future. You are young, and maybe there will be a medicine that will destroy this disease. I was told a few months ago that ET is kind of like being a diabetic. I have to take care of myself and have a wonderful Hematologist or MPN specialist. Not be afraid of asking questions and staying update on my blood tests and understanding them.
I just wanted to add similar to what others have already said. Since diagnosis of ET approx 3-4 years ago (just over 50) I, like most others often find myself thinking about how long I’ve got to live. It’s a natural reaction to living with a chronic MPN. I’ve also often wondered if it would be easier living with a cancer that more easily defines life expectancy- at least we’d know - and can respond accordingly right? The other factor that I think is hard to digest is the fact there isn’t a cure - so we’ve got nothing to “fight” right? With those two things I think us MPNers often feel we’re in no man’s land, just drifting through and trying to deal with symptoms & issues as they arise. I firmly believe that it’s human nature to want to know “how long we’ve got” with our MPNs and we’re all guilty of trawling the internet in search of an “answer”. It struck me that there really isn’t an answer and that’s the key thing we have to deal with. For me I see no point in dwelling on that issue at all. The massive plus point I ve taken from being diagnosed with an MPN is to try and enjoy life as much as possible Its focussed my mind to realise that no one lives forever - and once you accept that you can truly get more out of life……and a long one at that.
hi Mark – well sad! I do believe that I’ve always really tried though. I’m not often successful to live life, knowing that there is no guarantee for tomorrow. I think that when you’re feeling good, it’s easy to forget. Forget your diagnosis forget your dependence on God forget the struggle forget the lessons learned… You get the pictures. one thing this disease has done for me is stopped me in my tracks often the first thing every day because I wake up feeling so lousy and it’s not until I get it enough Tylenol, or ibuprofen only when Tylenol is not working, and then some added caffeinated tea to help with the low energy… That maybe mid day I have a few hours of normalcy where I forget how I’m feeling, and I’m able to just do things like normal however, I do think that constantly focusing on all that’s good amazing people in my life and the things I have to be grateful for our what’s most important ..thanks for your note
Maybe a misunderstanding? I think the stated years are how long HU might work for a patient. I was diagnosed in 2000, and HU controlled my counts for 12 years. If your doctor is misinformed about MPNs, you might need to find another.
hi 3195 - thanks for your note! My hematologist mentioned that he had seen most people tolerate Hydroxy for an average of 10-12 years, before needing to move to something else. Maybe that is similar to what you are saying? I also read that the average life span was 10-15 years for ET patients- which is separate than the span of effectiveness for Hydroxyurea. The liege span statistic had me concerned. One of the great benefits of this forum is the chance ask current patients what their experiences been. Seems like there are many who have. Gone well beyond that average.. I know everyone has a different diagnosis - but the input has been encouraging.
Dearest Jenn, I was diagnosed at age 50 with ET, JAK 2 +. I am now 85 and still kicking. Have taken Hydroxurea and 1 baby aspirin per day since diagnosis. I’m very healthy but I have spinal arthritis which is quite painful. I don’t think the arthritis has anything o do with ET or Hydera but is most likely just old age. I have a lovely life surrounded by my children, grands and greats. Was just presented with my 8th great grandchild on Wednesday. So very thrilling. Many graduations, weddings births, etc. I still get bloodwork every 3 months and have a video call with Onc. Mostly my platelets are stable but fluctuate a bit and the dose of hydrea is adjusted.
I’m wishing you a long and healthy life such as I’ve had. No need to worry about your lifespan. I hope you’ll hear from many fellow ETers who’ve had successful ET courses and that their experiences reassure you. Enjoy, enjoy.
Just to add to others, I am male and was diagnosed at 50 and am nearly 72, Have been on Hydroxy + 1 aspirin per day and have been pretty active running until last few years, going to the gym (ongoing) and playing golf fairly regularly. Only symptoms really are tiredness until last couple of years when I had some itchyness on legs and feet, just my scalp at moment. I dont get colds very often but when I do it tends to fatigue me rather than runny nose etc.
i had bad flu about 8 years ago which lasted longer than other people, possibly.
Have had flu jabs every year since and 6 covid jabs
I dont have any supplements and eat normally (reasonably healthily but like cake and biscuits)
So, all in all you can live a reasonably normal life, other than having regular blood tests.
Congratulations on your 8th Great Grandchild. So lovely to hear and so encouraging to read your story! Thank you for sharing - I am so optimistic based on the feedback received so far. I have also learned about healthy options to try that might help with reducing inflammation. I am praying and working hard to make 2023, the year I get more of me back! I’m determined to get to feeling better and yo do all I can yo love as healthy as I can.
I’ve had ET for about 15 years and took hydroxy the whole time
I’ve now advanced to MF and take Ruxolitinib and sure not ideal and I do feel tired and had a couple of blood transfusions but I’ve been living with this for almost 20 years and still going strong
Hello Jenngeeting, I was diagnosed , 8 years ago with ET Jak2 +. I am 74 years old.
My ET was found on a regular blood test and my platelets were high. I had been having ET symptoms for many years before the ET was found and a BMB was done to find the faulty gene. I believe the ET started at least 10 years before diagnosis. My oncologist put me on Hydroxy and baby aspirin. I was also on Simvastatin, Lisinopril for high blood pressure and Omerprezole to stop the heartburn.
I had a really bad experience with an oncologist who was not prepared to listen to anything that I had to say and made me feel awful. Now I am not advocating that anyone should do what I have done, but I can tell you that for me, Hydroxy is a poison.
Two years ago I began to feel that the medicines that I had been prescribed were having a serious effect on my wellbeing. I gradually reduced the medication and eighteen months ago I had stopped everything except for the baby aspirin. It became clear to me after stopping my medications, one a month, that hydroxy was the main cause of me feeling so unwell. I found a new oncologist, ( who is not an expert on MPNs,) but he is willing to accept that I have a choice and is ok with me just taking the aspirin for the moment. My platelets have gone up, but slowly and are now around 500. I feel great, positive and happy. Sure I have a few of the symptoms, but nothing too worrying. If my platelets do increase substantially, I might consider Pegasys/Besremi, if he is prepared to prescribe it.
I am careful with my diet and exercise much more now that I am feeling so much better.
I really do believe that we can lead a nearly normal life, for a very long time, and I intend to..I don’t believe that ET is a life sentence, but if we worry and have anxiety about it, it won’t help us.
You are young and new treatments are being examined all the time. I feel confident that gene therapy will be the answer in the not too distant future.
Try to be positive and live happy life Jen.
I wish you a wonderful Christmas and a healthy, peaceful and happy New Year. Hugs, Marcia
Thank you for sharing your story! Very encouraging and so grateful for your input. I’m listening and learning a lot right now and really hope to tackle the new year feeling better.
Hi JenngeetingHave you tried yoga/ ti chi, dance?🤔
I was really upset and found it very difficult when I couldn't run anymore. The gym also decided because I had a TIA they couldn't let me use the machines.🤕.
I found the best thing for me was to try and slow down, make new pathways for my health and exercise regime.
I had end of life CBT therapy which really helped me to get a new perspective and zest for life. The space to concentrate on me, my future and not the illness.
With your kids at high school embrace and enjoy the future instead of worrying about the future your illness will or may not bring.
You will find your energy levels will increase. Worrying and anxiety really zaps the energy levels and takes a path of emotional absence.
Letting go will help to bring emotional presence and the ability to be present.
Enjoy yourself 🤗
Who knows what the future holds. 52 is young, 🌱 maybe a cure will be found. Who knows, have Faith and Believe.
I Believe I will live into my 80's , watch my grandchildren grow and have children of their own.
Some days I feel shit, I call them my rest days. When I feel fluey, I rest too and the days I feel magnificent, they are the days I do all I can do. In lots of ways it is an up and down rollercoaster and worth embracing.
I found it is about self management, new routines, new goals and accepting the new Me.
hi I was diagnosed with ET 8 years ago at 60 and was told that if I took the hydroxy I’d have around 20 years and that I’d die with ET not from it. I felt a bit unwell before diagnosis mostly tired but since I’ve been on hydroxy I have never felt well. I’ve lost all strength. Just doing some housework and I’m washed out. Nothing i feel is ever related to the medication so they say. I feel they just don’t want anyone to rock the boat. What bugs me is hair loss and nails rigged and split to the quick. Fingers are always sore.
I’m on 1 a day 2 on Sunday with clopidogrel.
I don’t think they really know how long we have, I just wish it was pleasant
Hope you’re ok and just live your life. Enjoy it as much as you can. All the best. Xxx
The split nails is a classic HU effect. I had it. But you've got lots more that that on the HU. Since your worst effects started with the HU it suggests you're at least partly intolerant to it.
Has your Dr proposed other options? In particular Interferon (IFN). For ET Pegasys is prescribed off label. Some members have had much improved quality of life after switching.
I can't say I feel better on IFN, but the nails are ok now and the declining Jak2 allele counts and reports of longer life without progression etc is a big advantage.
Not sure why a medical professional would deny that what you are experiencing could be related when what you describe are known adverse effects. Do note than some people are able to tolerate Hu and benefit from it, but not everyone can. The good news is that there are alternatives. As. EPguy notes, Pegasys is the other first-line treatment option for ET. There are other options as well.
Suggest that you may want to have your case reviewed by a MPN Specialist for a second opinion. Perhaps you can find a more suitable treatment plan. Here is a list.
every time I see them and mention my symptoms I’m just told bloods are fine. Keeping my levels stable are the only concern and that’s it. I’m sorry if I’m complaining but it’s not pleasant and it’s constant. I see consultant haematologist not mpn specialist
That is not an acceptable response regarding your experience of adverse effects and/or symptoms of a MPN. Treating MPNs is about more than controlling blood numbers. Competent MPN care looks at all of the symptoms and adverse effects experienced and optimizes the care plan based on the needs of each individual patient. Suggest it is time to consult with a MPN Specialist regarding your MPN care plan. It is your right to decide who will provide your care. Here is a list of MPN Specialists. mpnforum.com/list-hem./
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