Essential Thrombocythemia: Looking for information and support

Oh my gosh, your photo is as vivacious as I imagined you to be just from your writing today! I hope you take the time to place that as your profile picture!

Just click on the little ‘icon’ person at the top of the page or the oval space next to one of your replies. It will take you to your profile page and you’ll see where you can edit your picture.

You’re very inspirational so I hope I see you popping up frequently. Don’t be shy and feel free to peruse other topics in the forum. With your @name of @cajunqueen, that made my mouth water for some of the best foods anywhere. Are you from the south?

@loribmt thank you so much for your kind words! Made me tear up....because you are so right!! Your words, "medical drama tossed in for intrigue" really best describes this season for me....you are 100% correct and I will start using this in my conversations when discussing ET. I found this platform by Google searching Essential Thrombocythemia - Symptoms and Causes. Once I entered into the Mayo Clinic website and read the valuable information about ET, there was a link at the bottom of the page that read: Connect with others like you for support and answers to your questions in the Blood Cancers & Disorders support group on Mayo Clinic Connect, a patient community, so I clicked on the Support Group and read all the stories and comments and realized that if I wanted to comment or post, I had to make a login account, to which I did! I am so thankful that I found this for my own experience and to hopefully educate and help others! I hope this answers your question and I look forward to checking in to get updates and give updates on my journey!!
Blessings,
Tifnie Queen

Good morning, @cajunqueen and welcome to Mayo Clinic Connect. Thank you for sharing your story with us. You’ll never know how many people you’ll be giving a lift to with your information about ET and how you’re handling this bump in the road in your life journey.

I love your positive spirit and attitude. I swear that is one of keys to facing any situation. It helps keep us focused to the future. You’re right in that this blood condition doesn’t define who you are. You’re the same vivacious woman you’ve always been just with a little medical drama tossed in for intrigue. 🙃

Again, welcome to the Connect forum. May I ask how you found out about us?

Good morning everyone! I am a 50 year old female and went to get my annual exam at my OBGYN. I have never been on any medications and I am fairly healthy but have been tired and less energetic for the past few years. When my blood work/panels came back, my platelets were around 779, so she sent me to my family doctor to re-test. After re-test a week later, my platelets increased to 810. My family doctor then referred me to my Hematologist and when she ran my CBC 3 days after my family doctor visit, my platelets increased to 847. She told me to begin taking an aspirin a day immediately because the high platelet count could possibly mean that my blood could clot too much and cause a stroke/heart attack. Being that it kept increasing within a few days, my Hematologist scheduled a bone marrow biopsy/aspiration on 9/20/22. The results from this came in on 9/30/22. I do have the Jak2 mutation and she diagnosed me with ET (Essential Thrombocythemia). She prescribed Hydroxyurea (500mg) daily with food and my 81mg of aspirin daily as well. When asked, she stated that this would be for the rest of my life because this medication will keep my platelets in normal range, if it does what it is suppose to do in my body. I started taking the Hydroxyurea this past Saturday at lunch (10/1/22) and so far, I have had no side affects. Praying this will be the case so that I can continue this plan of action. I have a blood work/panel scheduled for 10/20/22 with my Hematologist to make sure the Hydroxyurea is bringing my platelets down and doing what it is suppose to. If so, we will continue this regime. If not, she will adjust dosage and check again in 3 more weeks of the new dosage to make sure it is working and so on and so fourth. I will keep everyone updated as I find out what my body is doing in response to the Hydroxyurea. This has been the most shocking, anxious season in the waiting from test results and not knowing what is happening in my body! But, as I reflect back on this time, I know God has this and I have had a calmness at the same time in my gut that I would be ok and continue living my life with a positive outlook. No one wants to be on meds the rest of their lives, however, if this is what I need to do to prevent stroke/heart attack or some form of aggressive cancer, I will faithfully follow my doctors recommendations. ET is what I have, but it will not define who I am! I pray that this helps someone who may be going through this, or may have a friend or family member or know someone going through this.
Blessings,
Tifnie Queen (Cajunqueen)

I've been on HU, 500/day + extra 500 on M/W/F for four years. Next hemo appt in a couple weeks. Suggestions for questions I can ask about long-term HU side effects? Thanks!

P.S., Dad had ET also. He had foot ulcer that I think was likely a side-effect, but he was on very high HU doses, maybe up to 2,000 mg/day because platelets were well over 1,000.

I am on Hydro and have been for several months. It has done a great job of lowering my platelet count and I am having no side effects. Good luck.

Hello all. I m 61 year old male and just got diagnosed with ET before four weeks and dr put me on Hydroxyurea 500 mg twice a day and one ecosprin 75 mg every day. My platelets are around ten lacs. He asked me to start one tablet of Anagrelide 0.5 mg too but I kept on hold for two weeks as feel Hydroxyurea 500 mg which earlier was just once a day and now started twice a day since last ten days. So waiting for a week more if this can drop platelets count. Will be happy to get views from those who know about this disease ET or those going through similar issues . I walk 5 to 6 kms a day and some yoga too. Overall health is good. Deepak joshi Mumbai ( India )

I Linda. I also have ET and have been on Hydroxyurea for over 20 years as well.
Lately it has been playing havoc with my blood counts. My platelets are way down, and my white count and hemoglobin too.

I'm 68 have had ET for 12 years. Doing ok on hydroxy and aspirin. Fortunately was caught before any clotting events.

I do have abdominal discomfort at times, fatigue is a pain, but I have learned that it improves if you keep moving and learn to plan activities around higher energy times during the day. I don't do mornings or late night things. This was much harder to deal with when my son was still in high school and I was working, and my hat is off to other parents and folks working. Hang in there! Get as much good sleep as you can and stay hydrated.

If I could change just ONE thing at the hematology/oncology office it would be for them to stop asking me to rate my pain and depression on a scale of 1-10, and to instead rate my fatigue levels.

I hate retirement (former English prof), miss my students. The pandemic was hard, but I think we are all doing better now. I am learning to cope with the new normal.

My dad also had ET. His was diagnosed when he had his first clot. He lived to be 82 and died of something else, but ET did pose some quality of life challenges and it does complicate other morbidities.

Hydroxyurea like hall chemo will have an effect on your blood work. It’s only been in the last month or two that my white count has dropped along with my hemoglobin.They decreased my Hydroxyurea. Now my plateletsare313.