Essential thrombocythemia

I was diagnosed with Essential thrombocythemia (ET) last October having been hospitalised with tummy pain. Ct scan confirmed it was a nasty bloody clot and there were others in my liver and I had an enlarged spleen. Been on Hydrocycarbarmide since and a blood thinner and platelets have reduced from 1000 to 300 ish. My concern is my feet feel like hot potatoes and recently my bra feels too tight even on the loosest notch. Should I be worried as the bra thing is reminiscent of how i was in October with the blood clot?

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So sorry you are having feet and bra discomfort problems. Do you have Cancer Care Nurses, and easy access to the Haematology department/haematologist to talk over your concerns? Or good access to your GP if not?

You have done well getting your numbers down so far in a relatively short time. I was rejoicing to have my numbers down to 318, from 800 18 months ago. I have been on 7 Hydroxicarbamide Tablets per week for a year, with an extra 2 per week for 6 months. I am hoping that I may go back to 7 when my numbers have come down further, in part because I have had some milder feet and hand reactions. Discomfort, but not burning.

I do hope you get all the help you need. @BloodCancerUK has a phone number to ring as well if you are worried about anything. Don’t hesitate to call.

I wish you all the best, and hope the path becomes smoother for you.

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Welcome to the forum, AnnieH. It never ceases to amaze me what a variety of symptoms and journeys Essential thrombocythemia (ET) patients seem to present. As Modesigns has said, your counts seem to have gone down very rapidly. Mine took much longer ten years ago, and have never spent long in the supposedly “normal” range, on two HC tablets a day plus aspirin. But “my” haematologist has never seemed worried by this. As a nearly-80 year old male, can’t advise on any of your problems, but would encourage you to try to talk to your haematologist and listen to what they say. If you can take a friend with you to any appointment, that can be a real help as they can oftern remember things that you don’t.
You don’t say which hospital you are attending; sadly, there does seem to be quite a lot of variation between departments, so lets hope you are going to one of the more helpful ones. As I’ve said before, Aberdeen are brilliant, but if you live in Cornwall, or even somewher a lot nearer, that’s not much help.

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Thank you for your advice. I live in Suffolk so attend the James Paget Hospital. My normal consultant is great but the last one i was seen by was a locum and very brusque. Ill bear in mind everyones advice. Thank you all

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Dear @AnnieH
Thank you for posting and welcome.
Really great to see that your platelets are responding to the hydroxycarbamide. The side effects you are mentioning must be a concern, particularly if you had them prior to the clot. May I ask if you have relayed these concerns to the Haematology team looking after you? Do you have a Nurse Specialist that you can all?
Of course sometimes side effects are related to the treatment so have added this information on Hydroxycarbamide | Macmillan Cancer Support, whilst it does not specify ‘hot feet’ it does mention sensation changes. Did you have the burning feet before you started treatment?
We are very happy to talk this through with you: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma

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Hello AnnieH, and welcome to the forum, as well as the world of Essential Thrombocythemia. Similar to DickM, I am an approaching 60 year old male so wouldn’t dream of offering any advise reference your lingerie issues; I learnt that lesson a long time ago!
I was diagnosed a little over 5 years ago with Essential thrombocythemia (ET). This followed a heart attack that saw me having an emergency operation within an hour of calling an ambulance some 6 months earlier. At the time of my Essential thrombocythemia (ET) diagnosis my platelet count was somewhere on the wrong side of 1200 and I was put on Pegasys injections there and then. Some 5+ years later I am still on the Pegasys and whilst the side effects from the injections are manageable, it still feels “wrong” to be sticking pins in myself every couple of weeks, although to be fair, I’m quite good at it now!
Anyway, life DOES go on, with a few, generally, quite small changes along with the realisation that I was lucky to have my Essential thrombocythemia (ET) discovered early, even if I did have to endure a heart attack to aid discovery.
I too suffer with achy feet, sometimes they are burning hot, other times freezing, but always achy. My other major symptom is a bone deep fatigue that resting doesn’t alleviate and, as others on different threads have said, sometimes it feels as though my battery has gone flat. I still manage to work full-time, for now at any rate.

The only advise I will offer is to remember to be kind to yourself, smile, laugh and to take each day as it comes.

Best wishes to you,
Jimbo165

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Hi @AnnieH a great big welcome and how can I follow the great responses you have received from fellow forum members above.
I shall go off at another tangent and say it must be so uncomfortable wearing a bra that feels too tight and a constant reminder of not knowing what is going on inside you apart from it reminds you of your previous blood clot.
Please do let us know how you get on and the Blood Cancer UK support line is there for you on 0808 2080 888 if you would like to talk to someone.
Be kind to yourself

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Hi Gemma, yes i had the hot feet before the hydrocy pills but they have got worse. I assumed this was the Essential thrombocythemia (ET) and not the meds. I don’t have a nurse i can speak to but will run my concerns past the consultant next visit. Plus i thought id post on here to see if my symptoms were similar to others with Essential thrombocythemia (ET). Its nice to hear other patients experiences as you realise you are not alone :blush:

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Hi @AnnieH welcome to this excellent site - I was diagnosed with Jak2 Essential thrombocythemia (ET) about 9 yrs ago - i had no symptoms despite high platelets - however a year previously i had a TIA and they couldnt find any reason for it (I had the curtain effect in one eye and could only see out of the bottom half on xmas day of all days) the only reason my ETA was discovered was because I’d had bowel cancer and my bloods were being checked regularly so I feel lucky - I’ve been on HC for years apart from a blip 2 years ago when my mouth ulcers became uncontrollable so was put on weekly interferon injections - it stopped the ulcers but i developed other unmanageable side effects like hair loss and zero energy so I’m back on HC - my consultant recently prescribed a permanent low dose of daily anti viral tablets and that seems to have worked - when i first took HC I had tingling feet and hands but that’s subsided over the years - i pretty much live a normal life now but listen to my body and if i have ‘tired’ days i adjust what I’ve planned to do - i do have a specialist nurse that I’ve contacted from time to time when i have concerns so do ask your consultant if you can have one - alot of people live relatively long normal lives with Essential thrombocythemia (ET) so i hope that reassures you - write a list of your concerns to ask your consultant on your next visit - look after yourself

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I had to ask for a Nurse Specialist…it was a rather contorted phone call, going from one number to another, but finally getting there, and they couldn’t be nicer. They were very apologetic that they had not been present at my first post diagnosis consultation. I would encourage you to enquire. they will help with any side effects, and as they said to me, there are remedies for some of them. My first consultant was not so helpful, but my present one (phone) is lovely. The Nurse specialist can help you make sense of your consultations as well, if you didn’t understand anything.

All the very best on this journey, and as others have said, welcome to the forum. I hope you find it as welcoming and reassuring as I have.

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Hallo @AnnieH I was diagnosed with Essential thrombocythemia (ET) in December and am currently on 4 days 500mg and 3 days 1g and have got platelets down to 430. I recognise the tight bra problem and have taken to wearing ‘bralettes’ for comfort- they do help
Good luck
Ali

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Thanks for your support Pollyp. Sadly bralettes wont offer me enough support. But I’ve bought some bra extenders and ditched the underwired one which seem to be more comfortable. Im currently on 500mg x 2 and 1000mg x 5 which are working well for me but would love to get back onto 500mg x 7 which was what I started on. Take care x

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I have 6 mouth ulcers today and I don’t see my consultant for my Essential thrombocythemia (ET) until September. Should I mention this to specialist nurse or my GP? I’ve been taking hydroxycarbamide since February and platelets are down to 477 in June. I’m hoping my dose can be reduced?

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Dear @Vager17
Thank you for posting and I am so sorry to hear that you have mouth ulcers, you must feel quite uncomfortable? I would suggest calling your Clinical Nurse Specialist in the first instance as they may need to repeat your blood test? Do you have any other symptoms? Please let them know if you do.
Hope that you ger some respite from this and do call us if you need to talk: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma

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Hi @Vager17 a great big welcome to our forum you are in the right place and @GemmaBloodCancerUK has given you a brilliant response.
Your mouth ulcers sound really horrible.
Please do let us know how you get on and I look forward to hearing more about you.
Look after yourself and be kind to yourself.

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So sorry about your ulcers @Vager17. May I ask how much water you drink daily? I drink 2 litres a day, and have not had a problem, but recently had a couple of low water days and had an ulcer, so am back on the water game. Someone else had a similar problem in the early stages of treatment and then drank more water and they were np longer a problem.
The Clinical Nurse specialists will be very helpful re treatments. Wishing you all the best.

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So sorry to hear you’re ulcers are getting you down - I too have suffered dreadfully with them because of Hydroxycarbamide - after 7 yrs i was taken off Hydroxycarbamide and put onto interferon injections - the ulcers stopped almost overnight but sadly 7 months later interferon side effects were too much - i lost weight and hair fell out and became very unwell so i went back to chemo - ulcers returned with a vengence despite medicated mouth washes etc so I’ve now been put on anti viral tablets that I
take twice a day and ulcers have gone - if i do get one start it clears up before it gets any size - they are called Acyclovir so maybe ask your specialist nurse to mention it to your consultant - ulcers are miserable so i hope you get some help and advice

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