Essential Thrombocythemia diagnosis

Hi. I have had a unfortunate diagnosis of Essential Thrombocythemia (ET). I am currently living in Singapore but considering relocating back to UK eventually.
I am currently discussing medication available here (interferon or mild chemo drugs) to help reduce the platelet levels. I would like to understand the treatment options available in the UK (as I am a UK citizen). As this is a long term disease it would be great to get feedback on what the NHS can offer in terms of treatment and support.
Your advise is greatly appreciated.

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Hi @livelongandprosper, thank you for your comment and a warm welcome to the forum. How are you doing since your diagnosis? If you’d find it helpful to talk about it, you’d be very welcome to get in touch with our support team (Blood cancer information and support by phone and email | Blood Cancer UK).

You may wish to have a look at our webpages on Essential thrombocythaemia (ET)- Essential thrombocythaemia (ET) - what is it, symptoms and treatment | Blood Cancer UK. We also have a booklet on MPNs (myeloproliferative neoplasms), which includes ET- Myeloproliferative neoplasms (MPN) booklet | Blood Cancer UK Shop. Our ‘Just diagnosed’ webpages may also be useful- I’ve just been told I have blood cancer | Blood Cancer UK.

These resources go over what ET is, as well as the standard treatments here in the UK, and I’m sure others on here will be able to share more personal experiences around accessing treatment.

Do let us know if you’d like to talk any of this over or have any specific questions?

Best wishes,
Tanya.

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The prescription will depend partly on age and on ability to tolerate the standard treatments. You are usually advised by a haematologist through periodic appointments. There seems to me to be less enthusiasm for anagrelide in UK compared with the European continent as far as I can see. A lot of advice and support is also available from Blood Cancer UK and MPN Voice.
Jumbo4

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A great big welcome @livelongandprosper and I love your ‘name’, it sounds good to me.
@TanyaBloodCancerUK has given you a brilliant response.
It is a big geographical and medical decision for you, so many pros and cons I do not envy you.
I look forward to hearing more about you and please let us know what you decide.
The main thing is that you look after yourself.

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Hi Tanya
thank you for the kind reply. I will be sure to refer to the information you have shared. May I say how fantastic a resource this online group is! One of the big mental issues I face is having no one to discuss this with outside of my oncologist. It can be a lonely experience. This discussion format is a help with that. :slightly_smiling_face:
Thanks again for your kind and prompt response Tanya.

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Hi jumbo4… appreciate you sharing this information. I will soon be moving off my aspirin to a more stronger medication. I have had initial discussions on treatment options here in Singapore. I am sure the discussions on medication type are happening on the next hospital visit. Thanks for sharing a medication option (anagrelide). I will ask my oncologist regards this.
Thanks again for sharing. greatly appreciated!

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Hi Erica. Thank you for your reply. Yes, after the diagnosis my thinking has changed regards health decisions. There is the cliché about “taking your health for granted”.
I am very impressed with this support forum and wanted to thank you for being a Forum Support Volunteer. It must be extremely rewarding for you to help others when they are in difficult times.
I will continue to visit this online forum as it does help when knowing you are not alone.
Take care

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Hi again Tanya. I do have a quick question. If I was to return to the UK to live, is there any delay in accessing the NHS? I there a waiting period for returning citizens?
Kind regards

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Hi @livelongandprosper, I hope you’re doing okay. That is a very valid question. As you have an established diagnosis, it’s important for your care to be transferred over smoothly, so my understanding is that you should not have to face undue delays. I will tag our experienced Nurse Advisors here, as they may have some more insights for you on this topic @GemmaBloodCancerUK @LauranBloodCancerUK @Heidi_BloodCancerUK.

Best wishes,
Tanya

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Hi @livelongandprosper you definitely are not alone, you are now part of our forum family.
It does not seem to matter what blood cancer you have (there are about 137) many of us share similar fears, emotions, thoughts and practicalities.
Look after yourself and be kind to yourself you have a lot going on.
Yes, please do keep posting

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Hi @livelongandprosper,
It is lovely to have you on our forum and i do hope you are keeping okay?

It is understandable you have some concerns and questions around transferring care to the UK and it is our understanding that whilst you will need to be referred to your local haematology specialist from your GP within the UK, you should not face any additional delays or be assigned onto a different waiting list simply because you are coming from overseas.
Your GP should be able to advise you on an approximated timescale for your first haematology appointment when they make this referral for you.
Often , the length of time you will need to wait before being seen by your haematologist in the NHS can often vary from region to region but again your GP will be able to offer some more insight on this in accordance with your local NHS trust.

I do hope this is somewhat helpful and please do keep in touch should we be able to help with anything else.
Best Wishes, Lauran

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Hi and welcome to this very helpful group - i was diagnosed with ET 8yrs ago here in UK - the first preferred medication is daily chemo (Hydroxycarbamide) as usually the side effects arent too bad - i do get mouth ulcers and I’m prob get tired more quickly (but that could be old age lol)- last year the ulcers got too much so i was transferred to weekly Interferon injections - however 9 months down the line it made me very ill as the side effects from Interferon are harder to live with (may not be for everyone though) so now I’m back on chemo albeit with ulcers - however my specialist has prescribed a special mouthwash and mouth drops so I’m hoping that will help - but overall i have been very well living with ET - I can’t speak for everyone but my treatment in the uk has been very good - i have access to a specialist nurse and can ring anytime i have a problem - i do hope you can find the treatment that suits you best so you can lead a ‘normal’ life

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Welcome @livelongandprosper To the forum and thanks for posting

Sorry to hear about your diagnosis and hope you’re coping with coming to terms with it.

I have a different blood cancer but was on interferon for over a year and I’m more than happy to discuss my experiences of it, if you choose or advised to go on it.

Take care

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Hi @livelongandprosper I have been thinking about you and I just wondered where you are and how you are doing?
Take care of yourself