ET Sufferer

[Buddy167]

My first post here, so "Hi" to everyone. I was diagnosed with Essential Thrombocythaemia 6 years ago. I continue to be treated with daily Hydroxycarbamide.

I would be interested to share the experiences of others diagnosed with ET.

[LCNurse LeukaemiaCARE Nurse]

Hi Buddy 167

Thank you for joining the forum. If you need a buddy or any further information about ET you can also visit our website on leukaemiacare.org.uk.

I am sure your post will generate some discussion.

[Buddy167 in reply to LCNurse]

Thanks for the response. Through the 6 years since my diagnosis. Leukaemia Care have been so helpful. I even featured in the magazine!

Another Essential Thrombocythaemia patient has already been in contact and it is quite reassuring that we have similar issues (fatigue & bone pain). This is my first contact with another ET patient. Not many of us about!

[Senoritakazza]

Hi Buddy167 - I am 50 and was diagnosed in 2009. I am treated with Clopidogrel (as I am allergic to asprin), my most hated symptom is fatigue ugh!

One thing I have noticed is the huge difference in how some Specialists treat ET. Some use Hydroxy, Interferon etc whereas others use simple Asprin - how are you doing on the Hydroxy?

[Buddy167 in reply to Senoritakazza]

Thanks for your reply. Not too bad on the hydroxy, (now daily and for the last 6 years). Do you suffer bone pain, especially in the thighs?

[Senoritakazza in reply to Buddy167]

I get a lot of long bone pain - although I have Rheumatoud arthritis as well so it kind of all merges into one on some days. My only way of easing the bone pain is to cover my legs with fleecy blanket - the warmth really helps 😊

[Buddy167]

Whilst it is horrible that you suffer with ET, it is quite reassuring to know that we suffer similar symptoms. You are the first person I have had contact with who also has ET. Good luck for the future and thanks for your response.

[eastwood1932]

Hi Buddy, well I am another one of the select band, I was diagnosed in 2011 currently on HU and Interferon injections. The other resource if you dont already know it is MPN Voice, they also have a forum here on health unlocked. Yes fatigue is a major problem with this cancer with quite a few other problems. Never really know which is the ET and which is from the treatment though😉

[Buddy167]

Hi Eastwood 1932. Your last sentence is a real issue. I am also never sure if when feeling unwell; it is the ET, the treatment or something entirely different. I am lucky to have an excellent local GP who (knowing I don't like bothering her) brings me in regularly for a general check-up. All the best.