Essential Thrombocythemia: Looking for information and support

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

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.

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.

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

Welcome Mel@2523:
You did not mention having a bone marrow biopsy. It would tell a lot. It is good you started on Hydroxyurea three days a week. It gives your body a chance to adjust.

If you search on the website you will find many discussions on the subject.

Best wishes, Eileen

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

No longer taking AI drugs or actively dealing with my breast issues. Additionally, there’s no connection between the Breast concerns and my newly diagnosed (EI) blood cancer.

I’m new to this group and appreciate reading both the new and older posts.
The first time I was aware of an elevated platelet count was in 1989 after lab work during a prenatal visit. My Ob/GYN called and asked me to come back for another blood draw He wanted to rule out leukemia. After the second blood draw, he advised that nothing else flagged, and this was probably my “normal”.
In the years that followed, I never gave it a second thought. When I had blood draws for routine health visits, my platelet count was always in the low to mid 400’s. I wonder why my general practitioner did not alert to those numbers?
Fast forward to 2016…I started a weight management program that was led by a young doctor within my medical group. (Interestingly, she is also an OB/GYN.) As part of the program, she asked all participants to complete a very comprehensive lab work-up. After reviewing the results with me, she looked very serious and wanted to add a blood smear to my tests.
That’s when I received the news, ET. How many years have I had this and no one else connected the dots?
I was referred to a hematologist at the Mayo in Rochester, MN. The bone marrow biopsy confirmed ET with JAK-2 mutation. Like most of you, I was shaken with anxiety and worry. Knowledge is my way of dealing with it. I read every medical article related to MFP published in past 8 years to educate myself. Additionally, I learned that women with ET have a higher incidence of miscarriage. Checked that box 6 times! Did anyone else experience similar problems? Now, I realize how fortunate I am to have given birth to two healthy, wonderful children.
For the next 2 years, I added a low dose aspirin to my daily routine and had the platelet count checked every 3 months. The numbers stayed between 450-470. Since it was stable, I opted to only have the blood draws 1x/yr.
Just recently, the count increased to 570, so I’m scheduling an appt again at Mayo for a review and medical advice. If anyone is willing to share names/locations of your expert medical providers, I would be interested to hear. I always like to keep a second name “in my back pocket” should my specialist relocate or retire.

I’m new to this group and appreciate reading both the new and older posts.
The first time I was aware of an elevated platelet count was in 1989 after lab work during a prenatal visit. My Ob/GYN called and asked me to come back for another blood draw He wanted to rule out leukemia. After the second blood draw, he advised that nothing else flagged, and this was probably my “normal”.
In the years that followed, I never gave it a second thought. When I had blood draws for routine health visits, my platelet count was always in the low to mid 400’s. I wonder why my general practitioner did not alert to those numbers?
Fast forward to 2016…I started a weight management program that was led by a young doctor within my medical group. (Interestingly, she is also an OB/GYN.) As part of the program, she asked all participants to complete a very comprehensive lab work-up. After reviewing the results with me, she looked very serious and wanted to add a blood smear to my tests.
That’s when I received the news, ET. How many years have I had this and no one else connected the dots?
I was referred to a hematologist at the Mayo in Rochester, MN. The bone marrow biopsy confirmed ET with JAK-2 mutation. Like most of you, I was shaken with anxiety and worry. Knowledge is my way of dealing with it. I read every medical article related to MFP published in past 8 years to educate myself. Additionally, I learned that women with ET have a higher incidence of miscarriage. Checked that box 6 times! Did anyone else experience similar problems? Now, I realize how fortunate I am to have given birth to two healthy, wonderful children.
For the next 2 years, I added a low dose aspirin to my daily routine and had the platelet count checked every 3 months. The numbers stayed between 450-470. Since it was stable, I opted to only have the blood draws 1x/yr.
Just recently, the count increased to 570, so I’m scheduling an appt again at Mayo for a review and medical advice. If anyone is willing to share names/locations of your expert medical providers, I would be interested to hear. I always like to keep a second name “in my back pocket” should my specialist relocate or retire.