Just been diagnosed with et. I start tablets tomorrow but am still undecided whether to go ahead with treatment. I am just 98 and it seems pointless to me. My platelets were over a 1000 last checked. Do you think I’m being mad to start.
3 Likes
Hi @Barbara1 a great big welcome to our support forum.
You ask if we think you would be mad to start treatment, I would say that I do not think you would be mad whatever decision you make and perhaps only you can make the decision.
I attach the Blood Cancer UK details on Essential thrombocythemia (ET)
Essential thrombocythaemia | Blood Cancer UK
Perhaps if you are just diagnosed perhaps you might be in shock so take your time till you feel ready to make a decision.
Perhaps to help you make the decision talk to your specialist nurse or medical team, family, friends, consider a pros and cons list, quality of life etc.
The Blood Cancer UK support line is also there for you on 0808 2080 888
Please do let us know how you get on and I look forward to hearing more about you.
Look after and be ever so kind to yourself
3 Likes
I think that everybody’s journey is different and you have to make the decision that you think is right for you.
Have you had the opportunity to discuss your concerns with the consultant and ask any questions you have?
I can see @Erica has posted some useful links and the support line number if you want to talk things through.
Please keep us updated on how you are doing x
4 Likes
Barbara.1. Thank you for replying to my post. I was rather hoping I could find somebody of my age who had been through it and who could tell me what to expect.. I was thinking about starting the tablets for a month and if I found I couldn’t cope with side effects that I could stop the treatment. And let nature take its cause
2 Likes
Hopefully there will be others who can share their experiences 
3 Likes
It’s completely understandable to feel uncertain about starting treatment, especially at any age never mind 98! It’s a big decision for anyone, and it’s important to consider all aspects.
Like everyone has already said it’s always a good idea to discuss your concerns with your healthcare team. They can give you a clearer picture of the benefits and risks of treatment in your specific situation. Remember, it’s your decision, and it’s about what you feel is best for your health and well-being. If you’re still unsure, seeking a second opinion might also be helpful.
Your health and comfort are the most important factors here. Take your time to make the decision that feels right for you.
I see the amazing Erica has already sent you some great links, here is another I know of:
Thinking of you.
2 Likes
Thanks for contacting me. I had my new tbs this morning so I am going to take the plunge. I shall have my 1st one tonight. Will keep in touch and let you know how I feel after a week. Barbara.1
3 Likes
How are you feeling @Barbara1 - have been thinking about you today 
2 Likes
Hello Jules. I have taken my second tablet tonight and I’m just waiting for them to kick in. I know I shall have side effects but I hope they aren’t too bad.. So it’s just a waiting game at the moment.
I feel calm in myself so that’s some thing I guess. I’ve relatives coming up on Friday and we always have fish and chips for dinner so I hope I keep them down. 
3 Likes
Hello Barbara
What meds have they put you on?
I think my consultant wants to put me on hydro next year and I’m not happy about it so looking at other options.
Hopefully you’ve not had any issues with the tablets you’re on.
Take care.
3 Likes
I’m in early stage of treatment at the moment, only taken 3 tablets, so not getting any side effects yet. They are called Hydroxycarbamide 500mg.i have to have bloods taken each week for 4 weeks to see if the dose needs highering or lowering.
How long have you been having treatment for your cancer. Is it Essential thrombocythemia (ET). I am interested in anyone who has Essential thrombocythemia (ET) longer than me just to hear how they are progressing. Let me know how you are. Barbara.1
3 Likes
Hello there @Barbara1, welcome to the forum. I’m really so sorry to read of your diagnosis with Essential thrombocythemia (ET), but just wanted to say how great it is that you had 98 years prior to that without a blood cancer diagnosis, which is more than many of us could hope for! May I ask what your secrets to longevity might be?!
Seriously though, I am sorry you’ve been diagnosed at all. In 2023 I was diagnosed with a closely related Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET) called Polycythaemia vera (PV), and it sounds like we have much the same treatments of phlebotomy and hydroxycarbamide, also known as venesection and hydroxyurea.
I’ve taken hydroxyurea 500 mg daily since diagnosis and I’d now say its benefits outweigh its potential complications. For about 3 months after starting hydroxyurea I had pretty miserable fatigue which made it much harder to keep active or even have the energy to get through an entire day, but this came to fade as my body got used to the hydroxyurea. Despite the initial fatigue I tried to keep walking every day and started doing slow yoga, plus I kept hydrated which helps a lot. I’d say my pre-diagnosis energy returned after about a year. As the hydroxyurea came to control my blood cell proliferation, my need for phlebotomy reduced. I haven’t actually needed phlebotomy this year so far, which I take as a positive sign of my chemotherapy alone working as it should, and my haematologist is very pleased.
Perhaps you’d like to read the Blood Cancer UK information regarding treatments for Essential thrombocythemia (ET), including hydroxyurea: Essential thrombocythaemia (ET) treatment and side effects | Blood Cancer UK
Like others have kindly shared, we all react uniquely to our treatments. Something my haematologist shared with me regarding my own concerns about taking chemotherapy is that hydroxyurea has been used by people with sickle cell disease for many decades and research shows they don’t have a higher incidence of developing other cancers, which was my main concern with being prescribed hydroxyurea.
I hope you don’t experience the worst of potential hydroxyurea side effects @Barbara1, but I’d say try to give it time to kick in fully, which varies for us all. And there are always other equivalent medicines to swap over to should hydroxyurea not agree with you.
If you’d like to find other forum members with Essential thrombocythemia (ET) or taking hydroxyurea, you can type those into the “search the forum” box at the top of this page. The lovely Blood Cancer UK specialist nurses are also at the end of a free phone number, should you wish to speak to them on 0808 2080 888.
Do please let us know how you get on @Barbara1, I’m so glad you found the forum.
3 Likes
Just to let you know I have replied to your letter but unfortunately I sent it to wrong address so it has not been sent on. . I will endeavour to rewrite it after easter Barbara 1.
2 Likes
Oh no worries about replying again @Barbara1, just so long as you’ve got the number should you want to speak to the specialist Blood Cancer UK nurses on 0808 2080 888.
3 Likes
@Barbara1
Hi,
I was diagnosed in Feb 2024 and so far just 75mg asprin a day.
They’ve said when I hit 60 that’s when they will put me on the same tablets as you.
I’m hoping I can hold off a bit longer though as I really don’t like the thought of taking them. How are you doing on them?
Yes I have Essential thrombocythemia (ET). The way I look at it is it could be much worse!
2 Likes
Hi. Thank you for writing. At the moment I’ve only been having the tablet for about a week and I’ve had no side effects at all. I was dreading having them but I might be lucky. Your lucky in the respect that your having aspirin instead but if the doctor changes them for mine I shouldn’t worry about them at all. Your only a baby yet I hope what you have clears it, but I’m too old for that so I hope they keep me going as long as possible. Good luck. Barbara 1
4 Likes