Essential Thrombocythemia

[Mardihel]

Hi just joined, I was diagnosed with ET 4 weeks ago, shell shocked, had no symptoms, was found with a full blood count test. On hydroxycarbamide and aspirin. Platelet was 900 today 700 so it's working, feel tired, wondered about others symptoms, and advice will be greatly cherished

[Swede]

Hi there, yes, it is a bit dauning toget the diagnosis at first. When you read here you will find all sorts of good and bad things, but neither might happen to you! I was diagnosed 10 years ago and symptoms come and go and come back....so we all are different. There is one thing if I may recommend....keep your mouth healthy! I am talking, teeth, gum, and tongue. I am saying that because of the good bacteria you have in your mouth needs to be treated well, to be able to help with the rest of the body. For example, there is a clear connection between heart problems and bad health in the mouth.

I am sure other people will advise you about other things!

Try not to worry too much.

Take care.

[Superwoman]

Hi I have ET JAK 2 Posative diagnosed well over five years ago now, take Hydroxycarbamide, Aspirin and numerous other tablets, but so far so good.

When I was first told like you it came as a big shock got very down about it as I thought my life was over not a spring chicken anymore 🤪 but that was then and now life is good, first things first was recommended to join this forum which has been amazing such lovely peeps on here which are always there for each other with advise one way or another, or just a good place to be to have a moan very sympathetic ears all of them.

Next my advice to you would be drink plenty of water each day at least

2ltrs this helps with flushing any toxins through your body, keep healthy by eating plenty of fresh fruit and veg, do not eat junk food!! Take plenty of exercise, like walking, swimming Yoga, Pilates, riding a bike, even gardening, anything that keeps your mood good and your body fit. And on a last note I enjoy the occasional glass of wine 🍷 so hope this helps, you will get lots of good advice on here, also if you want you can get a buddy, just ask Maz our forums main lady well coordinator, she can also send you some information on ET.

Having an MPN is not the end of the world, you just have to learn to manage the good days and the bad ones, you will find on here people who have had an MPN for many years and have coped really well.

I have learnt over the years that my ET does not define me, just learned to live with it, take the tablets and get on with life.

So welcome

Jean

[WileyFrench]

Hi there – – like you I was completely asymptomatic and was diagnosed with ET by a haematologist after routine bloodwork during my annual physical with my GP. My platelets were high - between 500 and 700 - But I just took low-dose aspirin until this spring when apparently I had a small TIA and at that point started on hydroxyurea. As has been said make sure you drink lots of water one and a half to 2 L or more per day. I haven’t really changed anything that I’ve done – – I exercise, I drink wine And I try to eat quite healthily. I can say that I was very shaken with the diagnosis, just like you, and I really resisted taking the hydroxyurea at first. It was a very depressing month or so. But this forum and the people on it have helped immensely, because they are rational, real, and practical. I feel a lot better now, and I guarantee that you will too.

[amarylis]

Hi Sorry to hear about your diagnosis, but welcome to the forum. You’ve come to the right place and have already received some sound advice. As someone who was diagnosed with ET 23 years ago at a time when far less was known about it my advice would be try not to worry. ET has had a minimal effect on my life. For the first 8-10 years I simply took a daily aspirin, going for regular 3 monthly blood tests. When my counts went over the 1000 mark, I began taking Hydroxyurea. I have tolerated this well now for over 10 years and take a 500 tablet daily, 2 on Sunday. I have virtually no symptoms, have lived a busy and very normal life. My ET is almost symptom free. I do sometimes get tired, but that could be down to a busy life! I sometimes suffer slight gastric pain, so have recently begun taking medication for that. As others have said, drink plenty of water, eat a healthy diet and exercise regularly. I try to do all three (not always successfully as I enjoy my glass of wine 😊). Most important of all keep well informed, this site and the MPN website are both excellent sources. This condition does not need to be a total life changer. Take care and all the best.

[Ebot]

Totally identify with that feeling of ‘shell shock’. Go easy on yourself. It sounds like you are getting good advice and clinical care.

The fatigue you describe - given that you say you had no prior symptoms - may simply be due to the business of being diagnosed. It can be a really confusing, anxiety inducing - and exhausting - period.

MPNs are strange beasts and everyone treads a different path. You can never quite predict where it is going - or not going - next. Fingers crossed the counts will drop and stabilise and your ET will become part of the background noise of your life. Meanwhile the usual advice applies - drink lots of water, eat well, take some exercise, get a good nights sleep. And enjoy life! MPN Voice is an excellent and reliable resource. And welcome to this elite group!

[Wyebird]

Yes I was shell shocked when I found out about my ET. Hydroxicarbomide does make you tired but I’m surprised that you don’t feel the benifits of a lower platelet count. Maybe when they come down to within normal range you will do. Also they will be able to reduce your dose. I think that will also help with tiredness.

Good luck

[MCW22]

Ha ha I'm beginning to think I'm on the wrong website here, is this A A, everyone is drinking wine, yay, stuff the healthy eating and eat the junk food and drink the wine 😋🍷

[Orangemusic]

Hi

We are all sailing in the same boat. I was diagnosed of ET last month. I had just gone for a routine blood test for some other reason and my doc suggested me to consult a hematologist. I was shocked when i came to know i have ET. I was very upset. But i slowly realised that i have no symptoms what so ever and decided not bother much about it. I am blessed that i am a part of this group and my confidence grew up . As along as we are able to carry out our day to day activities without any problem we should not be concerned. Yes please do take the tablets , eat healthy and excercise. Life is wonderful and lets utilize it to the fullest.

[Mazcd Partner MPNVoice]

hi Mardihel, welcome to our forum, not much I can add to the advice you have been given, other than to say, we are here for you to help and support you, and please let me know if you would like any printed booklets. Best wishes, Maz

[ChillyAsh34]

I was diagnosed in Thursday and my head was every where,I read Wiley French post and it has helped thank you,it was a routine blood test for thyroid function that showed abnormal platelets then a further bloodtest show I was positive for JAK2 mutation V671 F no symptoms now on hydroxycabonmide and low dose aspirin ,I thought my life was over but joining this forum as showed me I can still live normally thank you all.I have just added this condition to my travel insurance for a few extra pounds so I am on the up

[nightshadow in reply to ChillyAsh34]

Yes, it is a bit of a shocker when you get diagnosed, especially when you are asymptomatic or in many cases, chalking the symptoms up to other causes.

[TTA_]

Regarding MPN symptoms and potential management, this study below is a good read:

"Prominent symptoms include fatigue (92.7%), early satiety (61.9%), abdominal pain (45.9%), abdominal discomfort (53.2%), inactivity (60.5%), headache (48.3%), concentration problems (61.7%), dizziness (55.2%), numbness (61.3%), insomnia (65.4%), sad mood (62.7%), sexuality problems (57.9%), cough (46.4%), night sweats (56.4%), itching (52.6%), bone pain (48.5%), fever (20.2%), weight loss (34.2%), and impaired quality of life (84.2%)" ncbi.nlm.nih.gov/pmc/articl...