Essential Thrombocythemia: Looking for information and support

For me, ET has meant being on Hydrea for the past 20+ years, getting a cbc every 3 months or so, and checking to make sure I have no spleen enlargement. It is a strange blood disorder because I have no symptoms that I'm aware of, however if I cut back on the Hydrea, then my platelet count zooms back up. So I have had to continue taking it and probably always will. Docs all say I will have a stroke if I don't take it and that if I don't take it, it is at my own peril.

Hi everybody, I'm here like you because i like to know people that is living with ET. I'm 32 years old and I was diagnosed ET 2 years ago. After that I'm taking Hydrea each day. Same @misty45 I have no symptoms. I'm grief because I'm woman and I wonder if I can be pregnant despite my condition. I'm trying to get information with doctors, cases of ET womens that got baby but I don't have certainty if it can be a big risk for me and for my baby. If you have bibliography of science cases let me know. Good luck and i hope we can share our experiences about ET.

Hi @kroolivera. You bring up a valid concern regarding your diagnosis and childbearing. As it just so happens, I was working on a clotting disorders and pregnancy blog post on our Hematology Connect Page. The story just went live, you can check it out here, https://connect.mayoclinic.org/newsfeed-post/clotting-disorders-pregnancy-what-you-need-to-know/. While we did not discuss Essential Thrombocythemia directly, you may find some of the information relevant and useful.

@kroolivera, if you don't mind sharing, have you discussed pregnancy with your hematologist?

Thank you for your response and link for further info.  I am very sure I raised no mention of nor concerns about pregnancy, as I am past that point in my life.  I have an appointment scheduled on 7/9 at Sloan Kettering for a second opinion, to have the top guns weigh in — continue my quest for facts and treatment.Many thanks for your outreach.Best always,

Susan Henriques-Payne

Hi Misty45,
Given your report out on Hydrea & the fact that you’ve been talking it for 20 years, do you take it daily? Do you anticipate take my it for the rest of your life? While managing it for 2 decades, have you had any “episodes” (stroke, clot or heart attack)? Of course I hope not. I am asking to get a sense of the drug’s efficency?
Deeply grateful that you’re forthcoming and willing to share details of your personal experience. Thank you always.

Just would like to hear from others out there with this diagnosis. I was diagnosed in early May, 2015. Have been controlled till now with Hydrea but having some changes in blood work and other issues and would like to hear other's experiences.

Hello @esperanzam, welcome to Connect. You may noticed I moved your discussion and combined it with an existing discussion with the same title. I did this so the other members discussing essential thrombocythemia would see your post and have a chance to respond. I also did it so you could read through some of their older posts as well. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought to the new location of your post.

@esperanzam, if you are comfortable sharing, what are some of the changes you are dealing with?

@huronshores
High platelets, no clue until routine blood test. Saw Haematologist, on Hydroxyurea since May/18 and took about 3 months to lower platelets. 78 yrs old, active and reasonably healthy .. Some allergies, well controlled asthma and have had two past surgeries for sinus polyp problem. Polyps are treatable but not curable. Since an infection could affect platelets, I saw a specialist re sinuses. He said I may need another surgery to help with existing polyps but did not seem to think it was cause of high platelets. (However, in doing a bit of reading I have seen some studies that say people with sinus polyps show higher platelets?). Very hard to say what is correct. Also, asked whether diet could lower platelets somewhat. Haematologist said definite no. However, again in doing some reading, there is info that says certain foods can lower platelets. I am not happy to be taking Hydroxyurea, as while it can be used for high platelets, it sounds like it affects pretty well all cells in your body. Certainly have noticed side affects and all seem to match up with the info the drug store provided with the Hydroxyurea. So far the Haematologist has pooh poohed all side affects. I have another appointment coming up soon, so another blood test re platelets. Still thinking and not sure what I am going to do about this but not happy taking Hydroxyurea forever. No one wants to have a possible stroke, thrombosis etc as a result of high platelets .. But at the same time, Hydroxyurea can lead to other problems. Sort of like taking your car to the garage to get get new tires so that you will drive safely but then the wheels fall off! I am speaking only for myself here and not saying you or anyone else should follow my thinking. Part of me is influenced by my age and that makes me wonder if my remaining quality of life is going to be affected too much by the medication. I have a neighbour that told me she has been taking Hydroxyurea for years but I don't know the exact facts involved for her. I have been pretty lucky health wise and have not needed much medical care over the years, as compared to others in my age group. Did have one problem where I exactly listened to a Doctor against my judgment and that turned out to be a disaster. So forever after, I will be questioning and trying to pick up all the information I can on medical issues. Guess I am a doctors nightmare. Don't know if anything here helps but I am just sharing my experience so far.

Thanks for sharing your experience. My daughter, 39 years old) with routine blood test was diagnosed with ET. Her platelets were over a million. She was started on a low dose of hydroxyurea (June 2018). After seeing a specialist, she changed to interferon ( just received her 2nd dose). The change was due to needing to be on hydroxyurea for the rest of her life and her platelets were down to around 800,000. I also wonder about diet. The first dr said it would not change things. The second dr encouraged a good diet and exercise. Wishing the best for you.

So glad to hear you are not having symptoms and it has not morphed into leukemia. My daughter, was on a low dose of hydroxyurea for 5 months (no real side effects) - her platelets went from 1.5 million to around 800,000. Two weeks ago her dr changed her to interferon. She does not hav JAK2. She has CALR. We are waiting to see how the interferon works. Thanks for posting it helps me to hear from other people loving with ET.