I am interested in connecting with others with this illness. I was diagnosed this summer with ET and have been to see two hematologists here in Michigan and then went out to Mayo clinic. I am a 27 year old female and wondering what kinds of experiences others like myself have had. I had doctors telling me I should go on hydroxyurea which is chemo therapy which I was very hesitant to do when I was having absolutely no symptoms. The elevated platelet count was simply found on a routine CBC. When I went out to Mayo I was told all I needed to do was take aspirin that there was no need for chemo therapeutic intervention at this time,especially because I am interested in having kids. I am interested in hearing other peoples experiences.
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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.
Thanks for the information, I would love to get those links you mentioned. You are right, since this is rare there is really very little information out there. I will see if if can figure out how you can email those.
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!
I am glad to hear from you!!! I too am interested in hearing from people who have been diagnosed young, i was 27 which is young compared to everything I have read from all the doctors I have talked too so 16 is REALLY young. I am glad her counts have been stable under 1 million. Do you know why they dropped from over a million? I plan to stay as far away from the chemo for as long as possible. I hope she too can stay away from it for a long time.
So far everything for me has been unremarkable. I still would have no idea i had the illness if I hadnt had the blood work. Does your daughter have any symptoms? Has your daughter been to Mayo Clinic?
My daughter has had bleeding from her nose and we are hoping that her symptoms will stop at that. So, no, she hasn’t really had anything too dramatic in the way of symptoms so far. We are in Australia so she hasn’t been to the Mayo Clinic but I have found their website to be the most informative. Glad to hear that you have been symptom free and hope things stay like that for you.
I have found that drs can be either rather dismissive of this condition or over excited and want to test for everything! My daughter has been through the screening process to be put on the bone marrow donors list if things should flare up but I have to say I am with you – If you are having no symptoms and your counts are steady then the aspirin is doing its’ job and there is no need to upset your body with additional drugs (especially as the side effects can be unpleasant). Take care, Maddie
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.
Thanks for posting. I hope you have heard back from Mayo by now and that they will be able to see him. I completely understand him not wanting to take medications because of wanting a family, I am in much the same situation. There is research being done through Mayo that lowering the platelet count is not needed unless complications are present such as clots or abnormal bleeding. Let us know what you find out.
Thanks Tessa for your reply, we’re trying to arrange the visit but haven’t completed. At present, are you receiving treatment in Mayo and how is it going?
I am currently on aspirin only, told no need for any chemo type of drugs as long as I have no complications and stay active.
Dear Tessa, it’s good to hear only aspirin is adequate for your conditions. May I know the full name of that medicine? So, we can see if we need purchase some to let my brother have a try.
As in China, the doctor has already asked my brother to use INTRON® A Interferon alfa-2b, recombinant For Injection which I’m not sure if it categorized as Chemo…
Have you heard about that medicine?