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[Simris]

69 years of age, just recently been diagnosed with ET, feeling very bewildered and alone with all this. Since very rare condition and don't know of anyone else with same condition I would be keen to hear from other sufferers.

Many thanks xx

[Chemo01]

Hi I’m 68 and have had ET since my mid thirties and have been on Hydroxycarbamide for the last twenty years, please don’t let this condition get to you it is very treatable, worrying about it is far worse than the condition ,follow what you are advised to take to control it and don’t let it dominate your life, chin up, I’m still alive and kicking after all this time, just don’t worry so much, cheers.

[Capricorndancer in reply to Chemo01]

Thanks so much. This is good to hear. Are you on Hydrea? My haem has told me stress is very bad for me so i am trying to stop worrying about what might happen.

All the best to you. Thanks for the positive words. X

[WileyFrench]

Welcome! You’ve come to the right place. People on this forum are very helpful and offer real-life advice and ideas. I, too, have ET - diagnosed about 3 years ago, and have taken hydroxyurea for about 18 months (also take clopidogrel & low-dose aspirin to prevent another TIA). I’m 64. I was really nervous and worried when I started taking my meds but nothing bad has happened at all. My life essentially the same - except for daily pill-taking, increased water intake and diligent use of sunscreen. Hopefully you will find it the same. There are people on this forum who’ve had an MPN for decades and are doing just fine. My advice would be NOT to use Dr Google (info is often contradictory and incomplete and can just be depressing - which isn’t helpful), ask lots of questions - of us and your doc.

[Simris in reply to WileyFrench]

Hi,

Thank you sooooo much for your encouraging message, certainly makes me feel bit better. Don't know if meds or condition but I feel so terribly tired and nauseous all the time, is this normal??? First few weeks I didn't leave home very much but now try to get out every day as per Dr advice, I still feel like curling up in a ball and staying in bed all day tho!!!!!

[WileyFrench in reply to Simris]

People certainly do talk about fatigue, so you’re not alone. Initially I felt queasy but that went away. I don’t experience the fatigue but I know that in my early days of starting the medication I was anxious and also sad and afraid, and that certainly made me feel little like doing much of anything. So that may be a bit of a contributing factor for you. The fact that you’re getting out every day is very good and I’m hoping - and believing - that you’ll have the same experience I did and your stomach will settle down and you’ll gradually return to feeling like “you”. I bet you will.

[Simris in reply to WileyFrench]

WileyFrench

That's great info to have that fatigue is big factor in this condition. Hopefully once I get head round it all and accept all this may start to feel bit better about it all.

[plum27 in reply to Simris]

When I was first diagnosed with ET, I was put on hydroxyurea and aspirin and occasional venesection. I felt very tired all the time - had to stop working, had frequent mild nausea - enough to put me off eating - I was loosing weight quickly. My skin became thin and delicate and my nails didn't grow normally. I had headache and body aches - flu like symptoms. Overall, I felt poorly. About six months ago, I changed to interferon and aspirin and about the same time it was noted that my vitamin B-12 levels were very low so I had a round of B-12 injections then started taking multi-vitamin tablets regularly. When I first whent on the interferon, the aches and flu like symptoms increased for several months, then settled down. I understand this is fairly normal. Now, my skin and nails are returning to normal and the past couple of months I feel less nausea, less fatigue and I'm eating better again - no longer losing weight. I still need occasional venesection, but not so often - every few months. My B-12 level is in the normal range now. I don't know what brought on the improvements, but I am very pleased to be doing better. The point is - keep talking to your doctor and if the treatment you are on isn't working well for you, consider the alternatives and don't neglect your health / conditions that are not ET related. You may react very differently to treatment than I did, but you too may find something that works well for you.

[Simris in reply to plum27]

Thank you so much plum2, I have mentioned fatigue and nausea to Dr but will see if anything different he can give me next time I see him, in couple weeks. My cpn nurse mentioned could be aspirin so will see. I'm still very new to all this having just been diagnosed 5 weeks ago so learning from all you lovely people on here. How glad am I that I joined this wonderful forum.

Simris

[Capricorndancer in reply to WileyFrench]

I agree! Google is just depressing. Never again will i look up ET etc etc.

B

[Karol_Rua]

Hi Simris,

Firstly, don't panic. I am 45 and diagnosed with ET 18 years ago. While it's described as rare, I'm so glad you've found this site to chat with LOTS of other people - it certainly doesn't feel rare with so many others living with ET.

Fatigue is certainly a symptom but pace yourself; lots of healthy food, lots of exercise and learn to rest before you overdo anything and run out of steam. Personally I've never felt nauseous...

Try to attend a conference if it's possible...MPN Voice host many throughout the year and experts will be there to respond to all queries. You'll also meet other 'sufferers'. Good luck and don't treat this as a very bad thing. Your ET experience may be smooth and problem-free

Take care, Karol

[Simris in reply to Karol_Rua]

Hi Karol,

Thank you for your response to my message, great ti hear from another sufferer (if that's right word). Your message gives me such a boost because since diagnosis I've been feeling rather downbeat. Great advice to rest before doing activities since I've not really been doing anything that strenuous but feeling rather exhausted after doing stuff. Your message gives me great boost, thank you.

Simris x

[Ratton726]

I too felt as you do,it is a shock- that I didn't expect (I am 74)!Try not to let it get you down-carry on as usual with whatever you like to do!

As others say on this site-people are very kind and caring towards each other!

Very best wishes

Ratton726

[Simris in reply to Ratton726]

Good to hear your comments Ratton726 just discovered this site yesterday, only recently diagnosed. What a wonderful bunch of people, offering support and certainly don't feel so alone now with so many friends to make me feel better about my condition. Thank you

Simris

[Stephen399b]

I'm 69. diagnosed with ET 3 years ago.

Feel better now than before diagnosis. I'm on Asprin and 10x HU each week.

I still work full time and although I do get tired, no real problems.

Don't Google! But this site and the American MPN news are both helpful and informative.

Good luck and enjoy life.

Stephen

[Simris in reply to Stephen399b]

Hi Stephen399b, Good to hear from you and am happy to hear that you are doing well with condition, hopefully when Dr gets my platelets down to acceptable level I'll feel much better with everything.

Simris

[Stephen399b in reply to Simris]

What is your platelet level? Mine was over 900 when diagnosed. Been steady at around 320 for a couple of years now. I was suffering with painful toes and joints, blurred vision etc, but not since platelets at normal level.

[Simris in reply to Stephen399b]

Just diagnosed few weeks ago, platelet level, funny enough, 900, 800 hundred last week so hoping down more when see hematologist couple weeks time, he increased chemo tablet last time so hopefully be down more with increased dosage.

[Stargazer50 in reply to Simris]

Honestly, the first few weeks are scary. You’ll get past that.

I was in a fugue as well...

[Simris in reply to Stephen399b]

Stephen399b

Platelet level over 900plus to begin with, last week down to 800plus, consultant upped dosage of chemo tablets I assume to try getting them lowered. At least blurred vision and pains in finger tips isn't so bad with taking aspirin.

[Meatloaf9]

Hi, I am 70 and ET Jak2+ diagnosed in 2018 but probably had for many years prior to that according to blood tests. My platelets run 459 to 550 over the last 3 years they bounce up and then down. I only take aspirin so far. Before I was officially diagnosed in 2018 I had absolutely no symptoms, found out on a routine annual blood test and slowly rising platelets over several years, GP always said not to worry about it unless they went over 600k which they never did - so far. After I started reading everything I could about ET and its symptoms I seemed to have a bunch of symptoms immediately after reading about them. Now after knowing about my ET for 2 years almost all of those symptoms are gone, currently only experience occasional tingling in hands and feet which may be because of my type 2 diabetes. I am so far able to do all the things I could before with maybe exceptions because of advancing age - so far. My point is don't worry about what you read on the internet, find a good MPN specialist that you are comfortable with and follow their advice and once you get over the shock of the diagnosis and you will get on with your life, what else can we do except make the most out of our situation. The mind is a powerful tool, try not to let it drag you down. You will most likely do very well for a long time. Best wishes on your journey.

[Hopetohelp in reply to Meatloaf9]

Such a wonderful response. I too believe that the more I read about symptoms the more symptoms I have so have just got on with life as best I can and take comfort in being monitored and remind myself that for 5 years I didn’t know I had this condition and felt fine if a little tired. I know some people sadly have major problems which you can’t get away from but I do find excercise helps so very much x

[Stargazer50]

Yes, rare. But don’t worry...stress and worry help nothing. I know one person in my area who has had it for 14 years and she’s thriving.

Last week I traveled to Mayo Clinic in Rochester from my home in Florida to signup to be part of a study. I learned a lot up there. Research is ongoing.

Please don’t feel bewildered and alone for too long. I am 69 as well.

Take care and be positive...

[Anag]

Dear Simris,

It’s wonderful that you found our support group so fast. Of course you are bewildered. We all went through that. Then we start learning about our condition and we learn how to deal with it and we basically get in with our lives.

I am 54 and was diagnosed 2 years ago. Truth is, I’ve had this since I was 45 and not one doctor bothered to send me to a haematologist despite my high thrombocyte count even when it was 758! My doctors were also friends of mine and I guess they didn’t want be to be sick.

You are in the norm range for age at time of diagnosis. ET started early for me, but there are even teenagers who have this. That is really rare.

I’d like to let you know that this is not a death sentence and you will need to take care of yourself a little more and you will feel better once you are on blood thinners. They are really important.

Whatever questions or concerns or fears may come up, please write us and we will try to help you in any way we can! Welcome to our amazing group. I’m sure you will make many friends here.

Anag 🙂

[Simris in reply to Anag]

Hey Anag,

Thank you for your lovely message of support, yes what a wonderful group of supportive people, to be honest I was a tad reluctant to join but my mpn suggested it may help me understand condition better and I am so so happy I did because I've been overwhelmed by such lovely responses. I am still very new to all this and messages have really made me feel much better about situation, I'm still concerned for what the future holds but with such supportive people as yourself I know I can tackle anything.

SImris

[Anag in reply to Simris]

Dear Simris,

Now that is wonderful! I am touched by your message and thankful that you feel better!

We all rock each other like babies and all is well. Step by step. There will be emotional ups and downs, so expect that. Breath deeply and know that tomorrow is always a new day.

First things first: read up on ET. The more you know and understand, the more empowered you are. Never be afraid to ask your Dr. anything. He or she should care about you, answer your questions and you should feel good in their care.

Hope you are sleeping well. Anag 😴

[Simris in reply to Anag]

Thank you so much Ansg for all your tips xx

[millycat]

Hi welcome to our exclusive club , I’m currently 61 years old , diagnosed in 2002 , I have been on hydroxyurea since then with no ill effects other than my eyelashes drop out occasionally! I don’t normally notice as I have terrible eyesight it’s only when I go to put on my mascara I realise that they have gone ! Like you I started out with a high blood count 960.. but after a couple of months this fell rapidly I now run at about 200 and this has always been constant once my dosage was tweaked. I suffer from fatigue and a couple of times a year have to slow down and sleep my body seems to shut down and I can barely move , I’ve learnt now to go with the flow and rest up , after about 10 days I’m back fighting fit. Once your meds kick in you will feel great, best you’ve felt for ages. Good luck on your journey

Regards Donna.

[Simris in reply to millycat]

Hi Millycat,

Thanks for your message and welcome to exclusive club, I certainly feel such a lot of support and love from this forum. My worst experience so far is this damned fatigue, just so very tired all the time yuk. I know it's probably early days since I was only diagnosed 6 weeks ago now, is does fatigue get less with time???

Simris x

[millycat]

Unfortunately fatigue is one of the main symptoms ! However you will start to feel better and then over time you will know your own triggers and signals from your body . Sometimes I have loads to do but just have to stop, I end up berating myself for being lazy before I realise what’s going on.

Good luck...regards Donna.

[Lucycourt]

So hope you have good medical support .

I was diagnosed 10 years ago when 67 - going great on Hydroxycarbamide 500mg capsules . Be very kind to yourself and welcome to us "rare " people .I don't read this helpline very often but full of kind people .

I was determined that my condition was NOT to become my hobby . We are the fortunate ones that live long lives . Early days for you - let your medics know and again BE KIND TO YOURSELF .

[Simris in reply to Lucycourt]

Hi Lucycourt,

Thank you for all your useful tips, yes very early days for me yet, I have a wonderful hemayologist who is soooooo easy to talk to and all nurses at hospital I attend are absolute angels 👼👼. I am so happy to be part of this exclusive group of "ET" folks who have made me feel so much better, yes I'm still concerned for future but I now know I have the best support EVER.

Thanks again 💖💖

[Capricorndancer]

I am so happy i found this group of lovely supportive people. Some groups can be so depressing but not this one. I am fatigued too but thought i was just lazy. Now i will be kinder on myself and try to heal emotionally. Thanks everyone. X

[Otterfield]

Hi, I am 58 and was diagnosed with ET when I was 39. I was on Anagrelide for a couple of years, then Hydroxycarbamide and later a combination of the two. About 5 months ago, I was switched to Pegasys. I really sympathize with your fears, but I can honestly say I have been fine. Yes, there are side effects and fatigue but I was able to adapt. Anxiety has reared its head this year, when my blood counts dropped very low, but on Pegasys things are stabilizing. We are all here to support you at what feels like a scary time.

[Simris in reply to Otterfield]

Hi Otterfield,

Amazing reading your ET story and how well you are doing. I know I'm just in early stages but with all the support I've received on here I feel I will cope with wherever this journey takes me, I'm just so very grateful that I joined because it has given me confidence for the future.

thank you

Simris xx

[Doggy1903]

So hope all going on well for you. you are right, at first the diagnosis is quite terrifying, I am 61 years and on hydroxycarbamide for over a year. There is so much help and support and I am glad to see you are able to read about folks with this condition 20 years plus on the medication. Doctors are excellent so hope very much you have good support .Please ask any questions.