Essential Thrombocythemia: Looking for information and support

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.

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

Also the Leukemia/Lymphoma have wonderful in-person conferences, so if you get on the email list, you will be notified if any conferences in your area. ET is one of the MPN (MyeloProliferative Neoplasm)......It is also important to have regular blood tests, because it can progress to a worse neoplasm/cancer, ET is considered a chronic cancer. All the best......

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.

I also was diagnosed with ET given Hydrea 500mg every other day. I have been on this medication for three years.
my platelets went from 700 down to 350.
I still do not understand why they call this blood disease a form of cancer....however, i just listen to my hematologist and take blood tests every six months.

hope this helps.

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.

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.

I also was diagnosed with ET given Hydrea 500mg every other day. I have been on this medication for three years.
my platelets went from 700 down to 350.
I still do not understand why they call this blood disease a form of cancer....however, i just listen to my hematologist and take blood tests every six months.

hope this helps.

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.

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.