For how long you've had ET?

[Alexa445]

Hi everybody!I got few questions if you guys can share little bit from your stories.For how long you have had ET and what age you've been diagnosed? What about progression 🤔.Are you om medication?for how long?I will be happy to read and learn from your experience.Thank you so much and wish you all the best🤗

[wendycu]

Hi.

Blood clot in brain - 2005, age 30,

My girls were 5 years Old and 7 years old at this time.

ET - 15 year ago, age 32 (2007)

MF - (2018)

Taking hydroxy, Anagrelide, aspirin.

Fatigue, bone ache, weight gain, anemic , anxiety are the main things from the beginning.

I look at life as, I am here, smiling every day, taking one step at a time.

I hope you are well.

[netty64]

Hi, I was diagnosed just before xmas with jak2 ET but the haematologist states that I have had it for some years but gps chose to ignore my increasing platelet levels.

[Doggy1903]

Good morning. I was diagnosed aged 60 ,3 years ago with ET. I've been well on Hydroxicarbimide , platelets now down to around 370.I have just a few effects, gastric system slightly more uncomfortable but nothing drastic.

So hope you keep well and feel very well supported.

[Mwalimu]

Diagnosed with ET age 69, now 11 years ago. Take HU and aspirin daily: 1000 mg HU X 3 days per week; 500 mg X remaining days+ 75 mg aspirin .

Platelets well-controlled and no progression to date. Few side effects: tendency to sore mouth; some digestive problems due (I think) to not being prescribed enteric-coated aspirin at first; fatigue which often can be exercised through. I avoid all processed foods and limit the amount of meat I eat. I also try to keep well-hydrated and avoid stress - easier to do when my age, of course.

Don't be disheartened at the thought of ET: we live as long as normal and it is for lots of us very manageable. Also a lot of research going on so future looks good. Good luck! Sallie

[Doggy1903 in reply to Mwalimu]

What a lovely post. I have a similar dosege but the other way 1000 mgs x4 days and 500 mgs x3!You are right exercise hydration also trying to reduce stress!!

Quite amusing as very little things can make me stressed, I look back on my younger years and cannot believe what i was able to do. Now panic sets in very easily!!

[Mazcd Partner MPNVoice]

Hi Alexa and welcome to our forum. When were you diagnosed with your ET, and are you taking any medication for it?

We have a lot of very helpful information on our website mpnvoice.org.uk which will help you to understand more about ET, so do have a look. I hope that you are feeling ok, it can be very daunting when you are diagnosed with ET, trying to find out all about it and how it will impact on your life. I hope also that being part of our community will help you, we are all here for you. Best wishes, Maz

[Alexa445 in reply to Mazcd]

Hi Maz.Im not the one with ET,my boyfriend is having.Everything started last year in january when he had a heart attack STEMI at 28 y old,you can imagine it was a shock for everybody,even for hospital staff.Few months after,he was diagnosed with ET.He take HU 1000mg every da.Im just worried about everything when i see people progressing or feeling bad.He feels fine for now no problem with HU.I will check the link what you gave me.Tjank you so much

[Caryopteris]

Hello Alexa,

I was diagnosed with E T 11 years ago. Since then I have been taking low dose aspirin and 1000mg on 3 days and 500 mg on the other days of week of hydroxy. The blood platelets have mostly stayed below 450 and I have had no blood clots or bleeding episodes. Side effects are peaks of tiredness sometimes quite suddenly, constipation for which I take Laxido when needed and occasional sore mouths. On the tiredness thing, I suggest that when it occurs, even if you feel like doing nothing, g et up and carry on and surprisingly you will feel better. Also do contact M P M Voice. They have been very helpful to me. I hope this has been useful. All the best to you.

[Turfbeg]

Hi, I'm almost 69 ,my symptoms are almost exactly as Caropteris except I was diagnosed with PV 5 years ago and take 1000mg hydroxycarbamide 4 days a week and 500mg the other days. The PV should have been diagnosed earlier - GP didn't act on abnormal blood results and so I think I could have had ET previously for quite a few years before it progressed to PV. Most days I can overcome the tiredness by beginning with some light housework or a gentle stroll but once started I often find I can do more but I still make sure I don't overdo things! Being retired has the bonus that I can arrange my day to take a rest whenever I want.

[lizzziep]

Hello, I was diagnosed about 10 years ago, I was 57 at the time. I was on aspirin only for a while until my platelets rose over 1000, then on hydroxy for 3 years, but I developed ulcerson my feet which wouldn't heal until I came off the hydroxy and changed to Anagrelide. the Anagrelide lowered my p;latelets better than the hydroxy, it does give me palpitations sometimes, but nothing major. Also had weight gain and anaemic, but otherwise ok. I have more trouble from my arthritis.

[Cja1956]

Hi, I was diagnosed with Et Jak 2 at age 52 in 2008. My platelets were around 600,000 at the time and I had been getting very bad headaches for a while, so I went for a check-up. I’ve been on various medications over the years, including hydroxy, Anagrelide, and Jakafi. Around 2016, I developed anemia, while my platelets were rising. My hematologist couldn’t seem to get either one under control, so on 2019, I found an mpn specialist and found I had progressed to Mf. Thats it in a nutshell. Take care and good luck on your mpn journey. Listen to your body. I had to reduce my hours of work because of overwhelming fatigue. But I have lived a good life and will continue to make the most of each day.

Let us know how you get on.

[Chemo01]

Diagnosed ET since 1986 but probably had it for a good number of years before that, I have been on Hydroxy and aspirin for the last 21 years,my age is now 69 so have had it for half my lifetime, still here 😃

[hunter5582]

I was diagnosed with ET about 30 years ago. I was completely asymptomatic. It was detected on routine CBC. It progressed to PV about 7 years ago. I have never had a single incident of thrombosis. As I aged, I tended to have more severe bleeding/bruising while on aspirin. I have been on HU for three one year periods, most recently from 4/18 - 4/19. This last time I have turned HU-intolerant. I was on aspirin for most of the 30 years, but the MPN Specialist took me off due to my bleeding risk outweighing thrombotic risk. Turned out to be a good decision as I had a hemorrhagic brain tumor. On the whole I have had more trouble with the secondary symptoms than issues with thrombosis or hemorrhage. I will note the controlling the erythrocytosis brought my BP back into the normal range.

We are about to change my tx protocol from phlebotomy-only to PEG-IFN. We will see how that goes.

[nightshadow]

Hi Alexa,

Wow, I can't imagine what a shock this must be to you and your boyfriend. I have found a great deal of helpful information on this site. Not only in terms of information, but also to be able to talk about something thatmy friends and family were going to get a bit tired of hearing about long before I was ready to stop talking about it.

I am 61 and was diagnosed with ET JAK2 in January, but records show high platelet levels since 2016, and I don't have records before that date.

Though my ET seemed to be unsymptomatic, it turns out that it was causing a great deal of the brain fog, low level persistent pain and large amount of fatigue that I had been blaming on age and depression.

I started Hydroxyurea (HU) at 500mg and 81 mg aspirin daily. My platelets plateaued last month so HU was increased to 1,000 mg 4x's week and 500 mg on alternate days. That dropped my platelets from low 500 to mid 200's. Still in the process of finding the appropriate dosage, and be prepared for 3-4 checks/year to make sure the dosage is still accurate. Though HU can also cause brain fog and fatigue, my levels of fog and fatigue have improved tremendously.

My reaction to HU has been overall positive, but there was a bout a weeks worth of mild reactions when I first started and when the dosage was increased.

I ended up losing about 8 lbs to date. Normally a side effect of HU is weight gain, but I suspect that because I eat when I am uncomfortable or in pain and the medication relieved those stressors so I eat less than before.

I don't have a long term experience to relate for you. But from what I've seen here there are a fair portion of long termers with ET, who were diagnosed from a very young age relative to the average onset age. How bad it is seems to vary a lot, but a constant thread I've read is eating a good diet and exercise is helpful regardless of how people are on the scale of how well they feel.

One anecdote for you that you and your boyfriend might want to consider. Every lent I remove or eat considerably lessen some foodstuff that, as a first world country, we tend to eat too much of. This year it was added sugar. I wasn't super rigorous about it, primarily no cake, cookies, ice cream, candy, chocolate etc. I had fresh fruit and/or nuts instead. I hadn't felt so energetic or basically healthy in years and I felt better than I did with removing meat one year or dairy other years.

And the point in that is that if your boyfriend is feeling wiped out and tired and he enjoys a nightly bowl of ice cream, he might feel better if he switches over to fruit instead. I found having a bowl of fruit on the counter helped encourage me to chose that instead of a sweet. It certainly won't hurt.

[Alexa445 in reply to nightshadow]

Thank you so much for your reply.We already change our lifestyle a lot,that meaning after the heart attack he quit smoking after being a big fan of,he quit eating bad and fastfood(once in a while he still enjoy),no more fizzy drinks,only water now and one coffee every day,less meat,especially pork since he was eating pork meat all the time(his favourite),no more white things(bread,pasta,cereals,rice),and cut the sugar also,more veggies and fruit now and just starting gym since last month when they opened.His energy increase a lot with the gym,before we came from work and he was going to sleep 2 hours(we finish work at 2pm),now after work we are going straight to gym untill 4 pm and he feels way better.I can say that for sure exercise is a game changer with the energy level.Wish you all the best

[Rancor114]

Hey Alexa,

I was diagnosed with high platelets back in December of 2018. I was 35. Initially I went to hospital due to having dizzy spells and numbness. I was referred to a specialist. Shortly afterwards I was put on HU and low dose aspirin.

I underwent a bone marrow biopsy. It wasn't as awful as you may have heard. Just uncomfortable not extremely painful or anything. Now I am on 1000mg HU and low dose aspirin daily. I haven't had many side effects. I am tired but I contribute that to being a Dad and working overnight.

It is a very stressful time for your boyfriend. Luckily he has someone like you to support him. Sounds like the lifestyle changes you all have made are paying off, so just keep doing what you are doing.

[SRH55]

Hi,

I was diagnosed with ET in 2009. I already had regular blood tests as I am type 1 diabetic & that’s when a higher platelet level was discovered, I had no medication until 2009, when platelets were 900 & I saw a haematologist, I was prescribed hydroxy. After getting some side effects - mouth & leg ulcers I went onto anagrelide, side effects again, so went onto Pegasys interferon 5 years ago, I was taking aspirin before all this because of my diabetes. I am MPL positive. I have tolerated pegasys well & my platelets have been well controlled, but now my wbc, neutrophil & hb count are too low, so my pegasys dose is being reduced. I am awaiting my next blood test & then poss a bmb & a scan of my spleen, in case it’s progressing to mf. I am 66.

Up to now I have had no blood clots or other major issues & feel fairly well, apart from feeling tired sometimes.

Best wishes,

Shirley