I wondered how people felt when they were first diagnosed with ET and whether that has changed as you've had time to research and understand the condition?
At first I was somewhat stressed / uneasy particularly as the diagnosis process took several months due to the time it took for the Lab to process the genetic testing (not that it helped as I understand I am triple negative).
My haemotologist really didn't seem all that concerned and having researched the subject extensively I am also now fairly relaxed about the diagnosis.
My platelet levels are not all that high and seem to fluctuate around the 500 mark (latest result 511). Ive not got a long history of blood works and the earliest tests are excluded for the ET diagnosis as I had an infection so many markers were up.
My age, absence of any high risk indicators and general good health mean that, fingers crossed, no intervention will be required for some time.
I don't really have any symptoms or at least none that I have noticed besides being quite a sweaty and hot and bothered person - I'm the one person who can take a 30 minute leisurely walk, on easy terrain, wearing a thin jacket in 3 degrees weather but still somehow be sweaty. I do get fatigued at times but I put that down to poor sleep or stress at work.
Lina
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It’s best to try and stay calm and relaxed. This illness doesn’t have to be life changing if you are otherwise fit and healthy. If you research this illness it can get quite technical. Reading some books on the basics of cellular microbiology will help. Raphael
I did GREAT with this disease when I was fit. My platelets hovered in the 600-700k range. I had some fatigue but otherwise, I had a normal life. Then I got pregnant (at age 41) and my pregnancy was fine but the aftermath has had me in an ET whirlwind. My platelets have been as high as 1.1 million and I had a blood clot in my vessels in my colon (a month ago) and I have not been the same since. Now I'm on blood thinners, hydrea and aspirin. Less than 2 years ago I was a triathlete. Today, I could possibly be a napathlete. Hoping to feel normal again soon. I have dreams about endurance sports and then I wake up and feel like crap. I'm trying not to get depressed.
I admit I was pretty freaked out at first, and in quite a bit of denial as I had no symptoms or issues other than high platelets. I am ET triple negative as well. I resisted any treatment other than low dose aspirin for about a year, and then last May I had a TIA, and so agreed to start taking hydroxyurea and clopidogrel at that time. I read WAY too much about potential side effects of hydroxy, and thank heavens I found this forum because the people on it live with MPNs and are sensible! I've had no side effects from hydroxy at all, and my platelets are now within normal range. However, I had another (damn) TIA at the end of December, and so now I take a low-dose aspirin with the clopidogrel, to keep the blood thin. Still no negative side effects (my biggest worry about the hydroxy was, vainly, hair loss - and mercifully that hasn't happened!). I'm 63 so my age makes me "high risk' as do the TIAs, so I guess for me there is no option but to take the medication. I'm hopeful that, like many on this forum, it will do the trick and not really interfere with my life at all. I still have days when suddenly I'll dwell on having ET and that can be a downer, but for the most part I don't think about it on a daily basis.
Ignorance was bliss on my behalf. I was only worried about taking hydroxy at the time. I am more nervous now with a bit more knowledge under my belt as Raphael points out, it is a very complex condition and platelets are actually dysfunctional, they mess with a lot of other body functions, particularly endothelial cells and attracting clotting factors to certain sites.
Although reducing platelets and taking aspirin if your platelets are not over 1 million, is definitely favourable, it does not stop the platelets "over-reacting".
I was relieved when I was diagnosed with E.T and once it was explained properly I was ok. I was initially scared that I had cancer because I was getting ulcers on my feet and toes, so the diagnosis came as a relief. Although it has the chance to develop into more serious conditions in future, the prognosis is good. I plan to appreciate every day from now on. Each day is a bonus now because I thought I was a gonner before being diagnosed.
When I was initially diagnosed with ET the only medication that I took was aspirin and my Consultant explained that I would require six monthly check ups and blood tests, but that I would not need to make any major changes to my lifestyle. So, like fee13, for over 12 years I was blissfully ignorant of the potential impact that the condition could have on me.
However, at age 60 I was advised to start taking Hydroxy and it was at that point that I started to learn more about the complexities of the condition and the impact that both the condition and the drug could have on my lifestyle going forwards.
I initially suffered from fatigue and felt quite stressed and anxious when commencing the Hydroxy, but once my platelet count dropped to normal after 6 months and the Hydroxy dosage was stabilised I started to feel less tired and anxious.
All in all I am glad that I did not know too much about the condition in the early years because it had no impact on me from day to day. However, it is all about balance and managing the condition and I feel that I as I get older I need to be more aware of the potential risks and how to minimise these.
I was VERY shocked, especially as my hospital appointment was in Oncology. I couldn't believe I had a cancer. Since then I have been seen only in Haematology. I also made the mistake of Googling ET and thought I would either be dead within a week or glow in the dark if I took hydroxy. It was a great relief to find this site and make sense of the disease. Nine years on I now take Anagrelide and aspirin and my platelets are in the normal range.
Same with me. I was shocked when I received an appointment to attend the Macmillan centre. So shocked that my blood pressure was over 200. Don't remember the bottom number. I've noticed that appointment letters are now worded more tactfully.
I was diagnosed in A&E when I felt so ill and weak I could hardly stand. I had numerous tests. A junior doctor came with the results of a blood test. He said you have cancer but you won't die. No further explanation or information. I was so stunned and replied, Well that's ok then and got a cab home.
I was 60 and platelets were about 800 found during a routine checkup. I was put on hydra. After 14 years on hydrea I had no symptoms or after effects. Life was normal except the last few years I bruise easily. Then it transformed to high risk myleofibrosis in November of 2018. Now I am on hydrea and Jakafi and having a little fatigue. I'm hoping I don't transform to AML too soon. I have high risk mutations.
Hi Lina --I was diagnosed with ET after having two rounds of breast cancer in the preceding three years, so getting the diagnosis of yet another cancer was both depressing and very scary. But my doctor told me that while ET was "technically" cancer (and it was clear he wasn't convinced), there were no symptoms with the disease, minimal likelihood of complications and no side effects from the medication (hydroxyurea, aspirin.) In the world of bad news, this was about the best you could get -- and I believed him and felt better.
But my experience was the opposite of what my doctor described -- I had symptoms and side effects out the wazoo and all the doctors I consulted told me what I was experiencing had nothing to do with ET. That was the hardest part of this journey -- the months when I felt like I was in a no man's land of symptoms without help or explanation.
Then, I started doing my own research and found this forum. The research could be overwhelming but the variety of personal experiences along with the help and support I found here balanced that out and gave me the means to do what I could for both my physical symptoms and the roller coaster of emotions I was feeling. That changed everything.
When I look back, it would have made such a difference to have known from the outset what I've learned since and gotten some support for what I was going through from my care providers. I would have been scared because any cancer is scary, but I wouldn't have felt crazy and so alone.
Also looking back, the difference between the experience I had when I was diagnosed with breast cancer and diagnosed with ET is stark. With both rounds of breast cancer, there was a huge amount of solid information provided to me, the experience I had pretty much matched up with what my doctors predicted, and I had an overall feeling of being well supported, cared for and in good hands. With ET, it was the exact opposite. It makes sense -- breast cancer is a common, well-researched disease and MPNs are rare with research just beginning and there's not much to be done about that. Still, knowing more about the disease I have than my doctors do is something I'm still getting used to.
Thanks for asking; it's been helpful to think this through and read about everyone else's experiences as well.
I was relieved that someone had finally put a name to my symptoms. I was upset however when the consultant passed me on to his registrar to sort out my hydroxycarbamide prescription. It wasn’t until he told me I could only get it prescribed at the hospital because it was a chemotherapy medication did the penny drop. I asked “Do I have cancer?” And he looked at me like I was asking a really stupid question and told me I did but added “ It’s not like you have a tumour or anything”. I could have wiped the smirk of his face as I had only just got over breast cancer so to be told I had cancer again really floored me. I have PV JAK2+ not ET.
Doctors can be so insensitive and ASSUME that we all understand medical diagnoses, etc. When they use the terms chemotherapy and cancer it needs to be followed up with a lot of details. Regular people panic from those words. That sucks that happened to you.
I went from being slightly concerned, to completely unconcerned and now 8 years later, I'm concerned again because I had Ischemic Colitis and am now on Hydrea, which I don't wan to be on but I don't want another blood clot. I'm only 42 years old.
When I was first diagnosed it didnt bother me. I felt I was reasonably fit and felt I could cope with Aspirin. My platelets are around 1300.
Now however, 10 years later I am confused. Dr thinks I should start Peg but Im freaked out by the possible side-effects, mostly the possible depression and greater fatigue. Ever the more common flu-like symptom sounds miserable. At least with the real flu I know I will get over it soon. But to potential have these symptoms for a long time...I dont know. Doesnt sound good,
Overall mentally I feel good. I just concentrate on the things I have a choice in and forget the rest.
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Hoping to feel normal again soon. I have dreams about endurance sports and then I wake up and feel like crap. I'm trying not to get depressed. 
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