Essential Thrombocythemia: Looking for information and support

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?

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.

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.

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 @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?

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.

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.

A bit more tired than usual, running to bathroom (bladder) a lot. Not sure what long term effects may be.

Welcome to Connect, @huronshores
Kudos to you for doing your research and advocating for your care. Please report back what you find out after your appointment with the Otolaryngologist.

Do you experience side effects from hydroxyurea?

77 year old female, good health, very active. Routine blood test recently turned up high platelets .. Saw Haemotologist, now on Hydroxyurea for 2 months. No cause for high platelets is known. I have chronic sinus problem and have had two surgeries in past for polyp removal. This helps but does not cure, so deal with frequent sinus infections. Have read that an infection can cause high platelets so I am definitely looking into that .. Upcoming appointment with Otolaryngologist that did sinus surgery to check out condition of sinus problem. This was arranged by me with referral from my regular Doctor but not something either she nor the blood specialist would even listen to. This may not turn up anything but I think it is worth checking. Don't want to take Hydroxyurea forever if not necessary.