Essential thrombocythemia

Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity of the disease. Only get maybe 1-2 "alerts" a month. An alert this morning led me to your post. Joined the "Mayo Group" here in order to answer you. Have never been to this "community" before. However, use the Mayo website frequently, as they seem to have the best experts and info on ET. "Lucky You" to have been diagnosed by them. I am 62, was diagnosed earlier this year, tested positive for the Jac2 mutation, am taking the Hydroxy to lower the platelets, and it is working! I am high risk, with other health issues, age etc., so the Hydroxy is most likely correct for me. Unfortunately, my Hematologist / Oncologist is a good chemist, but not very communicative. Most of what I have learned, has been online, and have saved several links that I would be happy to forward to you in an email (if I could figure out how to do that here). If you are not familiar with it, there is a doc (Ruben Mesa) the Mayo Clinic that has a utube presentation on ET. There is also something else interesting going on in regards to some Free (if you are already diagnosed with ET) DNA testing (be sure to consider the privacy issues) of which Dr. Mesa recently went on the board. Will send you the link if you are interested. Low iron is a challenge for me, and have infusions pretty regularly. The low iron that also causes major fatigue seems to be somewhat linked to the ET in my case. If you have some specific questions or want me to send you the links aforementioned, please email me.

Hello Tessa, my daughter was diagnosed with ET when she was 16 (actually she went for an iron level test as she was then a vegetarian and was told that her million+ platelet count meant she either had cancer or a cold!). I am very interested to hear of the experiences of other young people with the condition as none of the Drs here have diagnosed anyone so young and they have no idea how this might progress for her. My daughter is now 20 and on aspirin and her counts have been steady around the 600-700 mark. She has splenamegalopoly and there is an issue with the formation of her red blood cells. So far we feel very lucky and she has such a great sense of humor that it is sometimes hard to tell how much of an impact this has had for her. Anyway - if anyone know of someone as young as she is who has been diagnosed I would love to hear about their experiences. Thanks. PS steer clear of the chemo as long as you can - I have had very minor doses for RA and it ain't pretty!

Hello Tessa, my daughter was diagnosed with ET when she was 16 (actually she went for an iron level test as she was then a vegetarian and was told that her million+ platelet count meant she either had cancer or a cold!). I am very interested to hear of the experiences of other young people with the condition as none of the Drs here have diagnosed anyone so young and they have no idea how this might progress for her. My daughter is now 20 and on aspirin and her counts have been steady around the 600-700 mark. She has splenamegalopoly and there is an issue with the formation of her red blood cells. So far we feel very lucky and she has such a great sense of humor that it is sometimes hard to tell how much of an impact this has had for her. Anyway - if anyone know of someone as young as she is who has been diagnosed I would love to hear about their experiences. Thanks. PS steer clear of the chemo as long as you can - I have had very minor doses for RA and it ain't pretty!

Hello Tessa, my brother was diagnosed with ET (Essential Thrombocythemia) at the end of 2011. He was a 25 year old male as young as you. Actually, 3 years ago at the medical check, he got the blood test PLT 537 million per milliliter while the reference range for ordinary people is 100 ~300 million. He didn't see a doctor at that time as he didn't take it seriously. In Oct, 2011, he went for the medical check as well and found the platelets had increased to 1100 million. After the full check, the doctor confirmed he was a patient with ET even though this disease was rare with young people, and most often happened with the elderly people. My brother went to the best hospital in China but the doctors couldn't cure this disease permanently. Every day, my brother has to be injected with interferon to prevent the platelet amount from increasing quickly but recently, this medicine didn't have power to control the platelet amount increase. So, doctors suggested to use hydroxyurea which couldn't be accepted by him as he was not married yet and he wished to have a family.

In this situation, I'm looking for the therapy or treatment outside China, wondering if there's more advanced technology to cure this disease permanently. I'm contacting Mayo Clinic International patients dept and was requested to send the medical check results first. Everything is under preparation.

I'm coming to the community, hoping to discuss with the mates with the same experiences to see if there's good medicine or therapy for this disease, share the treatment progress or maybe the breakthrough in medical science and hope the disease can be cured in the future.

Hello Tessa, my brother was diagnosed with ET (Essential Thrombocythemia) at the end of 2011. He was a 25 year old male as young as you. Actually, 3 years ago at the medical check, he got the blood test PLT 537 million per milliliter while the reference range for ordinary people is 100 ~300 million. He didn't see a doctor at that time as he didn't take it seriously. In Oct, 2011, he went for the medical check as well and found the platelets had increased to 1100 million. After the full check, the doctor confirmed he was a patient with ET even though this disease was rare with young people, and most often happened with the elderly people. My brother went to the best hospital in China but the doctors couldn't cure this disease permanently. Every day, my brother has to be injected with interferon to prevent the platelet amount from increasing quickly but recently, this medicine didn't have power to control the platelet amount increase. So, doctors suggested to use hydroxyurea which couldn't be accepted by him as he was not married yet and he wished to have a family.

In this situation, I'm looking for the therapy or treatment outside China, wondering if there's more advanced technology to cure this disease permanently. I'm contacting Mayo Clinic International patients dept and was requested to send the medical check results first. Everything is under preparation.

I'm coming to the community, hoping to discuss with the mates with the same experiences to see if there's good medicine or therapy for this disease, share the treatment progress or maybe the breakthrough in medical science and hope the disease can be cured in the future.

Hello Tessa, my brother was diagnosed with ET (Essential Thrombocythemia) at the end of 2011. He was a 25 year old male as young as you. Actually, 3 years ago at the medical check, he got the blood test PLT 537 million per milliliter while the reference range for ordinary people is 100 ~300 million. He didn't see a doctor at that time as he didn't take it seriously. In Oct, 2011, he went for the medical check as well and found the platelets had increased to 1100 million. After the full check, the doctor confirmed he was a patient with ET even though this disease was rare with young people, and most often happened with the elderly people. My brother went to the best hospital in China but the doctors couldn't cure this disease permanently. Every day, my brother has to be injected with interferon to prevent the platelet amount from increasing quickly but recently, this medicine didn't have power to control the platelet amount increase. So, doctors suggested to use hydroxyurea which couldn't be accepted by him as he was not married yet and he wished to have a family.

In this situation, I'm looking for the therapy or treatment outside China, wondering if there's more advanced technology to cure this disease permanently. I'm contacting Mayo Clinic International patients dept and was requested to send the medical check results first. Everything is under preparation.

I'm coming to the community, hoping to discuss with the mates with the same experiences to see if there's good medicine or therapy for this disease, share the treatment progress or maybe the breakthrough in medical science and hope the disease can be cured in the future.

Hello Tessa, my brother was diagnosed with ET (Essential Thrombocythemia) at the end of 2011. He was a 25 year old male as young as you. Actually, 3 years ago at the medical check, he got the blood test PLT 537 million per milliliter while the reference range for ordinary people is 100 ~300 million. He didn't see a doctor at that time as he didn't take it seriously. In Oct, 2011, he went for the medical check as well and found the platelets had increased to 1100 million. After the full check, the doctor confirmed he was a patient with ET even though this disease was rare with young people, and most often happened with the elderly people. My brother went to the best hospital in China but the doctors couldn't cure this disease permanently. Every day, my brother has to be injected with interferon to prevent the platelet amount from increasing quickly but recently, this medicine didn't have power to control the platelet amount increase. So, doctors suggested to use hydroxyurea which couldn't be accepted by him as he was not married yet and he wished to have a family.

In this situation, I'm looking for the therapy or treatment outside China, wondering if there's more advanced technology to cure this disease permanently. I'm contacting Mayo Clinic International patients dept and was requested to send the medical check results first. Everything is under preparation.

I'm coming to the community, hoping to discuss with the mates with the same experiences to see if there's good medicine or therapy for this disease, share the treatment progress or maybe the breakthrough in medical science and hope the disease can be cured in the future.