Essential Thrombocythaemia

Posted by mel2523 @mel2523, May 1 3:11pm

Hi
I’ve recently been diagnosed with ET, I have never heard of it before my diagnosis and would love to chat with others who have it.

Last year in October I was have what I though was menopause symptoms. Fatigued all the time, itchy and then severely bruising from scratching, night sweats and weakness. I had bloods done and it came back with my platelets count of 690 and my white blood cells slightly raised as well.
I was referred to a haematologist who requested a full blood count and dna test. Unfortunately the haematologist is 2 hours away from where I live so I had phone appointments. All I got told on the appointment was I’m limited to what I can say over the phone, your bloods not normal, you need to have a CT scan which you can get the referral from Your GP. Had the CT scan all was clear of cancer. I had been in meantime really bad fatigued, multiple times being so weak and tired I couldn’t do anything but sleep, twice I had to go home from work because of it. I tried getting an earlier appointment booked with the haematologist, was told they would get back to me and never did ! Day before my scheduled appointment it was cancelled and I was told your next one will be sent to you . Needless to say I was livid !
Finally had an appointment sent out and it was a different haematologist. He was brilliant straight to the point explained things well and sent me out some information. So here I am finally diagnosed and taking Hydrea 3x a week.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

preacherswife1977 | @preacherswife1977 | May 3 7:31pm

In reply to @remo1110 "I also was diagnosed with ET given Hydrea 500mg every other day. I have been on..." + (show)

I have asked my hematologist several times was this a type of cancer. Each time he says no, not now. Very puzzling!!

preacherswife1977 | @preacherswife1977 | May 4 2:27pm

Have any of my other ETers had any problems with their feet? I am one for wrapping up at night and for the past few months I have had to have my feet out from under the blankets. They do not hurt but feel as though they are asleep without the pringly/pricklyl feeling. If I close my toes it feels like my feet are swollen but they are not. Last night they felt very hot on the inside. I see my hematologist Tuesday I will mention it to him but wanted to ask you guys first

nyjean | @nyjean | May 5 6:24am

In reply to @1995victoria "Also the Leukemia/Lymphoma have wonderful in-person conferences, so if you get on the email list, you..." + (show)

Recently diagnosed with ET with JAK2& in a few months of daily HU my platelet count has dropped into the normal range so I'm feeling hopeful, but I know there's a lot to learn. What kind of "worse neoplasm/cancer" might it progress to? What email list are you referring to & how do I get on it? Many thanks to all.

nohrt4me | @nohrt4me | May 5 8:21am

In reply to @preacherswife1977 "Have any of my other ETers had any problems with their feet? I am one for..." + (show)

Yes, I have that. I fill my hot water bottle with cool water and put my feet on it under the covers. Keeping feet moisturized and using drugstore hydrocortisone cream on the prickles seems to help me. ET patients also seem to be associated with erythromelalgia. Would be interested in what your doc says!

1995victoria | @1995victoria | May 5 8:29am

In reply to @nyjean "Recently diagnosed with ET with JAK2& in a few months of daily HU my platelet count..." + (show)

Leukemia Lymphoma Society go to LLS.org A wonderful organization, with very important information. Just sign up your email on their website
MPN encompasses 3 "levels" of disease LLS will explain it all

1995victoria | @1995victoria | May 5 8:39am

About feet. My toes hurt 3 years before my ET diagnosis. It's not joint pain, it feels like pain is in bone (also in my shins) Dr don't seem to know what is causing the pain, and I don't like taking tylenol or advil every night, but there are nights when pain keeps me awake and sometimes awakens me from sleep. Before I was diagnosed, I would take one aspirin every night, but now can't do aspirin (baby yes, not full size), I get black and blue marks too easily.

sregiani | @sregiani | May 5 2:00pm

In reply to @preacherswife1977 "Have any of my other ETers had any problems with their feet? I am one for..." + (show)

Go figure! Just like you, I often flip off the covers from my feet. They feel hot and swollen from the inside, but "normal" when I touch them. Not hot. Not puffy. Just different.
I used to wear socks at night bc my feet were always cold, but not in the past couple of years which is coincidentally about the same time I was diagnosed. Sounds like another interesting relationship w/ET. I'll mention that one to my heme doc next visit.

mel2523 | @mel2523 | May 5 11:59pm

In reply to @eileen11108 "Welcome Mel@2523: You did not mention having a bone marrow biopsy. It would tell a lot...." + (show)

I did ask my haematologist about the bone marrow biopsy and he said not at this stage ? I was told by the first haematologist I seen that I would have to have one if the ct scan was clear.

bevjg | @bevjg | May 6 7:06am

In reply to @preacherswife1977 "Have any of my other ETers had any problems with their feet? I am one for..." + (show)

It sounds like neuropathy in your feet but you need a neurologist to confirm it. I have had neuropathy in my feet years before I was diagnosed with ET.

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