Hi my name is Shirley and have just been diagnosed with Essential Thrombocythemia. I’m 77 years old. I was married for 57 years 21 of the last years I cared for my husband with multiple health problems lastly dementia. I was told on the 22nd May this year that I might have Essential thrombocythemia (ET), on the 24th May my husband died. On the 24th July I was told the the diagnosis was positive. I have been put on a Chemotherapy drug called Hydroxycarbamide, my first one taken 14th August. I was nervous taking the first one, mainly because I am now on my own, but i have family close by and support from lovely friends. Now taken my 2nd one last night. I was told there might be side effects, and have not seen any mention on the chats about this topic. I know we are all different and some might get them and some not. Would be interested for any response from forum on this subject.
Hi @Shirley
Welcome to the forum , I am sorry to hear about your diagnosis and loss of your husband. It sounds like you have had a tough time of things.
I have a different diagnosis and have little knowledge about Essential thrombocythemia (ET) , so can’t offer any useful advice but wanted to say welcome.
The people on here are great and very supportive so am sure someone will offer a more useful reply . Please take care and be very kind to yourself , all this is a lot to take on at anytime let alone after your very tough time
Best wishes Dottie
Hi Dottie Thank you for your kind words. I really dont think things have sunk in yet, but I’m going to be positive and I keep saying onwards and upwards. I’m enjoying reading all the stories on this forum and makes me aware im not alone.
Kind regards Shirley
Oh, @Shirley you are certainly never alone on our support forum, you are now part of our forum family.
Firstly, I cannot imagine what you have gone through, especially over the last the last 3 mths. my thoughts are with you.
I am not surprised that you were nervous starting chemotherapy, personally I always feel the unknown is scary.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
As @DottieB says take time to get used to everything that has happened over the last few months and be ever so kind to yourself and please do keep posting as I look forward to hearing more about you.
Yes, onwards and upwards and perhaps up and down, it’s all natural and a day at a time.
Thank You Erica your words are so kind. I have wrote the Blood Caner support line number down for future reference.
Hi @Shirley ,
Welcome to the forum! I am very sorry to hear of your your husband’s passing and your recent diagnosis of Essential Thrombocythemia (Essential thrombocythemia (ET)). I’m sure this must be a very difficult time and I’m glad you’ve reached out to our online community.
I can see you’ve already had some lovely replies from @DottieB and @Erica . I hope you hear from more people and are able to connect with others living with Essential thrombocythemia (ET) who can share their experiences.
I have tagged your post as being related to Essential thrombocythemia (ET) and about a new diagnosis. This will hopefully help other people find it. If you want to see other posts about these topics, just click on the grey boxes underneath the title of your original post, above. Here’s the link to all the posts about ‘essential thrombocythaemia’ in case this is helpful: Latest essential-thrombocythaemia topics - Blood Cancer UK Online Community Forum
As Erica has mentioned, the Blood Cancer UK Support Line is here for you, if it would be helpful to talk things through with one of our experienced blood cancer nurses.
Take care,
Tom
Support Services Team
Hi
I too have Essential thrombocythemia (ET). Was diagnosed last year after routine blood tests showed increased platelets. At the moment I’m taking aspirin daily but next year when I hit 60 they want me to start taking hydroxy. Got to be honest and say I don’t want to take it but I guess we will just have to see what’s said over the coming weeks/months.
I have some fatigue that comes and goes and also painful bones which again comes and goes.
It’s all a very big learning curve that’s for sure. This site is fantastic and as we’re all in this same boat we all know how you are feeling.
Keep smiling! We’re all here for each other x
I am so sorry you received confirmation of this condition after your husband of 57 years had died. My condolences for the loss of such a long term partnership, during which it seems you may have been acting as carer for some considerable time.
I wonder how you are getting on with your medication? I hope you will find it is mostly trouble free?
I am a year older than you, and have been on Hydroxycarbamide for Essential thrombocythemia (ET) for about 3 years. I have adjusted reasonably well to being on medication, although I made some adjustments to ease my path. I drink 2 litres of water daily, and I gather that may be helpful in preventing ulcers. I also found that if I took the tablets in the morning or at lunch time I would need to sleep for some time soon after, so I always take them after my evening meal. (The one and only time I took them after lunch, I had to go to sleep half an hour later, and I slept without moving for a full 2 hours. Not such a good idea if I were needing to drive!) The upside for me is that I sleep pretty heavily most nights. I decided to take after food as I figured it may be best, in the name of ulcer prevention, that the cytotoxic tablet did not lie directly on the stomach lining. There are no official instructions as to when the tablets need be taken, but I didn’t’t want to risk that.
As I am an artist, I was not keen to have the side effect of neuropathy. However, after about 2 years I did begin to have tingling and some numbness in my hands. For the moment this is not detrimental to painting, but may well be. I have been doing Taichi hand exercises, and I am surprised that this has been a great help in reducing the effects, so I will continue with these.
I do wish you all the very best as you adjust to the loss of your husband, and the adjust to the chemo. I am glad you have a supportive family and good supportive friends to help you through both of these things.
Thank you for your kind message. I am through my first week on the Hydroxycarbamide and I’m good. I was told by my consultant to take it at night, but then wondered does that mean before I go to bed or after my main meal at tea time, and decided to do the latter, so I take it about 7 pm. I’m sleeping well, but have always been an early riser, so usually wake up around 5 am.
I have never been a great drinker of water, but obviously that has to change, so have got myself a water bottle with the measurements on. But you’ll laugh, I empty the amount into a wine glass.
I have always loved making things, dresses, decoupage pictures, even tried my hand at pottery. When I retired I took up making cards and used to sell them, but my dexterity was getting poor so I had to give it up.
I will get bloods done next Friday then a fortnight after before I get my next prescription, so will be interested to see if my platelet levels have reduced.
Thank you for your concern, and do hope you will continue to be healthy and enjoy painting.
Oh @Shirley yes you really did make me laugh when I read that you pour your measured water into a wine glass, I love your style!!!
You certainly are an artistic person, perhaps you might find a craft that does not require so much dexterity and I am glad that you can still do your painting.
You seem to be getting into a good routine with your medication and blood tests, please do keep updating us how you are getting on, and really look after and be kind to yourself.
@Shirley - I like the wine glass!! I have a 500ml beer glass! Not that I was ever really a beer drinker, but it saves me having to remember how many little glasses I have drunk, or having to fill overwhelming litre or 2 litre bottles.
It seems your consultant may be on the ball, which will be a help. I hope your numbers respond well to treatment. Mine took some time to come down initially,. They are in the normal range now, and are pretty stable.
I do hope you are still able to be creative in spite of losing some dexterity?
I have a plan to do abstract acrylic paintings, not using brushes, but pallet knives and other more robust implements. Will do botanical work as long as I can, but it has helped me mentally to have another plan for the future.
All the best for your blood results, and your treatment going forward.