Hello everyone, I've just joined the site. I'm 61 and have had ET for about 20 yesrs. It was first detected when I had blood tests before some surgery. It has been controlled by daily aspirin. But I went to see haematologist on Saturday and platelet count is now 615 and he wants me to go for more tests and possible bone marrow biopsy in new year. I'm feeling a bit jittery as it looks as though its progressing. In general I've felt very well up to now and I keep with and active and try to eat healthily. In recent months I've had sciatic type pain down my left leg and this has been treated with physio, which was working but now it seems to have come back. It's easy to associate every ache and pain with ET I suppose though! Has anyone else had anything like this?
Newbie: Hello everyone, I've just joined the site... - MPN Voice
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Hi there, you have been very fortunate, to have only been on asprin to stop the blood being so sticky for all this time. The BMB is nothing to worry about at all. I would have another one tomorrow without thinking. Your Haematologist will probably put you on hydroxycarbamide to bring your platelets down a bit. Keep well and try not to worry. Regards Carole ☺
Hi Carole, thanks for your reply. I did have a BMB years ago and I can't remember much about it! I suppose I'm a bit worried as well about the potential side effects of the hydroxycarbamide. I'm trying to research the different treatments at the moment. Regards Angela
Hi I have taken hydroxy 1 per day for 3 weeks and my platelets came right down, now I am taking 4 per week to keep In control control. Not had side effects after a few days
I was getting really stressed before I started taking them but not now. Best Wishes Ivy
Hi, I am just 65, and had a routine CBC that showed high platelets - 1117k - and I found out on Halloween! After 3 weeks of 1 baby aspirin & hydroxyurea & a , and few side effects, they're down to 832k.... I'm still doing what I did before, but of course, I'm slowing down just so I last (for some reason I think I overdo activity, so I'm taking more time to have coffee with friends, and just do what I enjoy). I guess it's time to stop reading about all the side effects, since I hardly have any (more gas, just watch my digestion a bit, but love to eat (but I'm only 90 lbs. and 4 ft 11.)
I have diabetes and take 500 mg Metformin also in the evenings. We'll see. The long term effects are not pleasant, but it's nice to know it could be earlier than we'd planned, so that we can plan, just in case we drive off the cliff earlier. Of course, these possibilities existed before, too, since traffic accidents are a huge cause of death. In a way, for me, it's been an odd gift. I quit thinking I needed more money or to change the world; we have enough for a very good life, grandkids, community, and lots of support. I also am surrounded by cancer survivors who are doing just fine. So...I'm still doing what I do, but I think about it first. Is this what I want to be doing now? So it's leading me to find the balance and grace I've always wished I had. This forum is very good for me. Thank you.
As you are over 60 you are likely to be put on Hydroxycarbamide anyway. Your platelets are still pretty low but bone pain is one of the symptoms of ET.
As you have had ET for so long and only just joined the site you should be aware that about 8 years ago ET was reclassified by WHO as a blood cancer. You are able to claim against any critical illness policy you have and on a smaller scale you are entitled to a n NHS prescription exemption certificate which covers all prescriptions not just ones for your ET.
Don’t worry about it you have had the same disease for 20 years without problems
Hi, I am a 67 year old bloke who was diagnosed with ET earlier this year and I can assure you it hasn't affected my lifestyle or ability to do things one little bit. My hematologist confirmed her suspicion of ET without doing a BMB, she just ran a DNA test from my blood sample which confirmed the JAK2 mutation. Easy peasy. I also get the sciatica type pain down my left leg, particularly when I have been sitting for a long time, so I just take that as nature's subtle way of telling me to get up of my ##### and do something, and then the pain goes away.
I take aspirin and Hydroxycarbamide (initially 500mg per day but now 500mg Mon-Fri and 1000mg Sat & Sun). My platelets count has dropped from 638 to 448 and is hopefully still dropping. It really works and I have had virtually no side effects. Believe me, the future with ET can be a very enjoyable place, but we all need to be just that little bit more watchful.
With regards the C word, it really is just a word. Calling it a cancer doesn't change the diagnosis, the treatment or the prognosis. It's really just a way of classifying the disease, but it does mean that those who normally have to pay prescription charges can be exempted - so if anything it is a benefit being termed cancer.
Keep your chin up. You've found the right place with MPN Voice as there is always someone who has similar experiences and we are a very helpful and supportive lot 
John
Hi John thanks for your reply which I find very encouraging! I'm a very active person doing lots of walking and horse riding and I'd hate to have to compromise on those. I also find the sciatic type pain worse after sitting for a while and also over night sometimes. I had physio and she gave me exercises which I do twice a day and it helps a lot. I'm really glad I've joined this site. regards Angela
Hi, I think it was bad luck to be diagnosed 20 years ago. You’ve been extremely lucky to go all this time without H. I had a stroke 3 weeks after my 50th birthday then about 3 days after my 60th I was diagnosed with ET. Being high risk and already on clopidogrel( aspirin alternative) I went straight on to H. I can assure you the benigits outway the risks. I started on1 500mg a day. No effect. Increased to 1000mg. Once down from802 to450 my dose was reduced slightly. Slight fluctuation stage lead to yet another increase in my dose. My platelets are under 400 and I feel really good. Low platelets suit me dispite borderline anaemia.
In order to increase my HB I now take chia seeds and B12 supplements.
Too early to tell if they have made an impact.
Since going onto 16 500mg a week I do have tiny mouth ulcers occasionally. Happy to put up with them.
Try not to worry,
Good luck.
Hi Angela
Your platelet count is the same as mine, and when you think about it not a lot higher than normal at 450. My heam is happy with that count as it seems to be stable. Like you I am only on aspirin. My heam is not in a hurry to put me on HU. I am so happy about this. I am not into taking meds. Wow 20years! I was only diagnosed in 2015 at 63yrs by chance with a random blood test, makes me wonder how many other people have ET and don't know it?. If I hadn't had the blood test I would never know! The BMB is not a worry just a bit tender afterwards. Just to let you know I have no symptoms. Good diet and lots of exercise! I have had sciatica when I put my back out years ago and as you say physio seams to help. best wishes Lyn
Hi Lyn thanks for your reply which is very helpful and encouraging. My count has risen steadily over the past year or so and the haematologist wants to do more blood tests in the new year and maybe a BMB. He's talked about the H drug but it all depends on what comes back from tests. So it's a waiting game! Regards Angela
Just to also let know Angela my platelets were 970 two years ago when I was really stressed and suffering anxiety. Once I took away the cause of the anxiety and stress, which took 18months! I came right!! platelets dropping to 605. It was a great relief. Lyn x
Yes I've read that stress needs to be avoided if possible, but not always possible! I'm glad things sorted out and that your count dropped!
Hi when it was first detected my platelets were over 700. I was put on aspirin and they came down but have now risen again to 688.
I am 100% certain that stress can affect platelet counts so I do my best to avoid it!
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