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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.
Replies to "Good Morning Tessa. I set up a google alert for Essential Thrombocythemia because of the rarity..."
I just got diagnosed with ET and am 65 years old. I am nervous about taking the hydroxy which has been prescribed for me. My count is 830. How are you doing on this medicarion
Hello. I was also diagnosed in the UK with ET 10 days ago. I am 54 years old and have tiredness, and headaches. Although I wondered how much is my age vs ET. At the moment the Chelsea Haematology’s doctor said just take aspirin. The iron infusions sound interesting. They said I was low on B12. Is that connected? Any information links greatly received.
I was diagnosed with ET in 2006 at the age of 52. I had a bone marrow and iron infusions. My Dr. couldn't find anything with the bone marrow and the iron infusion didn't help. I was put on hydroxyurea and had a very bad reaction to it. After a few months, my Dr. changed me to anagrelide, which I adjusted to much better. I am now 67 and am still taking it. My platelet count was 1.2 million. I have gotten it down around the 500 thousand range with 3-4 a day. If I only take 3 a day, it is around 750 thousand. When I moved and got a new Dr., he did another bone marrow and found that my Exon9 gene is mutated. (If I remember correctly, this was the correct gene.) I stayed on the same medication, which is effective. I don't have any side effects that I recognize from the medication except for the days when I take four tablets, I feel tired. I also take a baby aspirin once each day. I get my blood checked once a month and an EKG every year. Today on my check, I was told that my red blood cell count was low and that this can be a part of the progression of the disease due to scarring of the bone marrow from making so many platelets. I'm going tomorrow to buy lots of spinach and kale! I am praying for a cure and doing meditations and visualizations! Meanwhile, I'm living life to the fullest! It hasn't slowed me down at all!
I would also appreciate more info. I have ET for over 8 years and have been on hi for all that time. I have now developed pancreatitis, experience fatigue. Need to connect more and learn more.
Hello. My mother just celebrated her 81st birthday and is struggling with ET and side-effects from Hydrea. She is able to be active before her daily dose, but afterward suffers from blood pressure spikes, extreme weakness and fatigue, tremors and more. She goes to the ER every month (it used to be weekly) because she is frightened she's slipping away. Can anyone share how they have managed side effects? Any resources she could use? I’m asking for her because she lives 1000 miles from me and is not able to search for herself.
I would really be interested if you could send me any links or info that you have found. I'm in the UK and keen to find out more about ET many thanks
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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.