just joined this group today I’ve been living with ET since I was diagnosed in 1999 I have become more anxious about it during Covid since only have telephone consultations with Haematology now instead of face to face. My main symptoms are fatigue & dizziness would love to communicate with someone else who has this rare disease
Hi PrincessJan and a very warm welcome to the online community
Although I don't have essential thrombocythaemia I do understand the worry of not having face-to-face appointments during the pandemic. I should be having three monthly check-ups after having been diagnosed with melanoma 4 years ago but these have become telephone appointments, which are obviously not as good because the consultant can only ask if I'm concerned about any area of my skin and can't give me a physical check.
I'm tagging my friend Thehighlander into my reply to you as he looks after the blood cancer groups here and might be able to put you in touch with other people with ET.
When you have a minute, it would be great if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.
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Hi PrincessJan and a second Welcome to the Community, I see my find latchbrook has tagged me in, I am Mike Thehighlander and try to look after our blood cancer groups.
Essential thrombocythemia (ET) ia one of these life long conditions that we have to lear to live with, my type of Non Hodgkin's Lymphoma is also incurable but treatable so I do have an understanding...... I also was diagnosed was back in 1999.
ET is rather rare and like some of the other rare cancers we dont have an exact group for ET..... we would have a lot of groups if my tried to cover every type of cancer.
But we do have folks come onto the Community looking for help. You could put Essential Thrombocythemia or ET into the search tool near the top and search the site for any posts then you could hit 'reply' and talk with them if they are still on the site.
You may also want to check out MPN Voice a support network for people with MPNs (myeloproliferative neoplasms) providing information and support.
It’s always good to talk and the Macmillan Support Services provides lots of information, support, financial guidance or just a listening ear.
Most services are open 8am to 8pm, 7 days a week and it's free to call on 0808 808 00 00 have a look by Clicking here to see what is available and we also have our Ask an Expert section, but do allow two working days for replies from our expert team.
If we can help any further do get back to us on this post.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
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Hi princess jan I got E.T and feel ok one day and no energy at all other days mornings always dizzy at most time I try to convince myself it will go away but deep down I know its going to get worse some people dont understand when I say got blood cancer E.T cos its rare in bone marrow . So princess you are not alone I fee the same take care keep going thats all we can do
Hi I got E.T and true its hard for some to understand this rare blood cancer I wish I know more about it but then again I also pretend I dont have it I try keep pushing myself and cos its a unseen illness some dont beleive I got cancer then say E.T and they never heard of it I do feel its hard to explain unless they can relate maybe someone on here can .thankyou
Do please check out MPN Voice as it’s a great support network specifically for people with MPNs (myeloproliferative neoplasms) providing information and support.
Thankyou Mike I have a look at that many thanks for reply
Hi. I was diagnosed in 2015 but had blood symptoms for over 10 years before that. Ask to have b12, folate and ferritin measured. My heamaglobin is fine though. I have just been treated for very low b12 and this can cause dizziness. I agree that these unseen problems can get you down. Having had a possible virus I now cannot walk far. My haematologist is really good on the phone, she listens to how I am feeling.
my new problem is that ,with having had my Hyderabad more than doubled this year, my hair is getting very thin. At least I’ll be able to get it cut soon.
Hi Janet H3, just dropping in past to say Hi and I am always around to help out as best as I can.
Hi Jan I was diagnosed with ET about 7yrs ago just as I retired - I had bowel cancer several years ago and ET was only picked up when my blood was being tested - I also had a TIA beforehand but it snt picked up at that stage - I was on oral.chemo (hydroxycarbamide) for 6 yrs and after the dose had been got right it worked very well for me - however I developed numerous mouth ulcers which bece too painful to live with so I am now on Interferon injections - the ulcers have gone but it's not a nice drug and leaves me very tired and achy at times - like you I'm having telephone consultatio which is worrying as the interferon hasnt yet brought my platelets down to an acceptable level and last month it was put back by another month so I've no idea whether its working any better yet - Im wondering if there's anyone else on here that is on Interferon who could offer any advice? I hope you get on well with your chemo and stay well
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