Essential Thrombocythemia: Looking for information and support

Hi @cweible19782006 I just read through your reply and my first thought was, “Wow…with friends like that…”. You can fill in the blanks! 🙃
They’re not very empathetic to their friend who was just diagnosed with a blood disorder…and for the record, it is also a blood cancer. Technically, Essential thrombocythemia is an example of a myeloproliferative neoplasm. These are blood cancers that happen when your body produces too many blood cells. In your case it’s too many platelets which can cause some serious health risks such as blood clots.
So, for you, this diagnosis is a life saver! The medication you’ll be given will help keep reduce the platelets and sustain them at a healthy level.

While we can all benefit from a healthy life style and exercise, thrombocythemia is not a result from anything you’ve done. I really am sorry you were the recipient of your friends’ callousness. You are not deserving of comments like that.

Hi I was newly diagnosed with this and am waiting to start on medication. I am symptomatic with constant chest pain and shortness of breath though. I am JAK2 negative as well. I was just told by my mom's close friend and her daughter that this is not a cancer and that it is a disorder and that I need to except responsibility for the things that have happened to me and basically to loose weight and eat healthy, exercise and take my meds and I will feel better. I told them both to say that to the others that have been diagnosed with this cancer. I'm scared but remaining positive. I never had thrombocytosis my platelets have always just been elevated. Good luck with everything!

Thanks for the encouragement! I'm just worried because I fear that I've had this for a long long time. I had a hemorrhagic stroke when I was 24 caused by a vertebral dissection and we never knew why it happened and I've always had chest pain ect and then in 2018 I had another dissection of the vertebral artery and didn't know why. Then 2 years ago I was diagnosed with CAD and had 2 stents placed in my LAD and still have 50% in my RCA and was recently diagnosed with the cardiac microvascular disease which is the slow flow of blood into my heart. Now I am short of breath constantly and have chest pain pretty much all of the time. I've always been on a full adult aspirin and had previously taken plavix for my stents. So hopefully with knowing what we know now I can get on the right meds. I just hope it's not to late for me....

Hi, I just read your post and am sorry that you are having a tough time right now. We’ve all been there, especially when first diagnosed. It does get better so hang in there! I used to have yearly bloodwork and was concerned about my increasing platelets over a 3 year period which then became elevated above normal levels. I was lucky though, my dad was a family practitioner, and I brought it to his attention first, and he told me that I needed to see a hematologist. My dad was not happy with my doctor for not referring me earlier. I was diagnosed before the JAK II enzyme was discovered. The doctors used to run every test imaginable, and if you were negative for every other blood disorder, but still had high platelets, then you were given the diagnosis of essential thrombocythemia. I was diagnosed at age 45. Went on treatment at age 50 and am now 66 years old. I have been on Hydroxyuria 500 mg., 5 days a week for 16 years now. We all have different dosages as the doctor has to see what works best for you and your blood levels. I think it took about 2-3 months to figure out the correct dosage for me so I was going to the doctor every week or two to check my platelets to see how it was responding to the medication. I have also been taking two baby aspirin daily for about 20 years. I feel great, just a little tired and have had no problems. I’m still working. Best of luck to you!!!

I have had ET for about 15 years. Also mitral valve prolapse associated with severe scoliosis. The mitral valve will need repair in the next few years. Recently discovered something is also going sideways with my thyroid and glucose levels.

What I learned is that you can get all this sorted out, but it takes time. A lot of time. It's an exercise in developing patience and learning how to enjoy life despite these things hanging over your head.

A pitfall of the American health care system is that your GP coordinates care, but you end up going to several specialists and they tend to stay in their lanes and don't really look at how one issue impacts other morbidities.

You really have to keep reminding your docs about the big picture and nudge them to think holistically. If you've found out your ET affects your heart condition, you are ahead of the game!

I know it’s a lot thrown at you right away…I’ve been in your shoes (not ET, but another blood cancer) It clips you right off at the knees. But in your situation, getting this diagnosis is really positive because now you know why your other meds weren’t working! This discovery is big…and manageable. 🙂

There are a couple of different treatment options that your hematologist will discuss with you once he determines your exact diagnosis. Don’t hesitate to reach out to me or any of the other members who have ET. You’ve just joined a new family and we’re all here to offer support and encouragement.
Take a deep breath…and don’t forget to exhale! Keep me updated, ok?

Hello and thank you very much for responding and for all of the useful articles and information. I met with a hematologist last week and we are waiting on the results of the JAK2 and a couple of other things she ordered. Needless to say I am anxiously waiting. I am already at The Dana Cancer Clinic in my city that I live. I know I still have lots of testing to go. It's just hard to take in. I have to get a colonoscopy done ASAP and of my mammogram.

I'm sorry I can't really help you. I was diagnosed in October and put on high dose aspirin. In January I started taking hydroxyurea, 1 a day. Last week they have doubled my dose every other day. I do not know all the side effects yet and I do not have to concern myself about going to work as I'm retired. I don't know if the problems I'm having now are side effects of the hydroxyurea.

Good morning, @cweible19782006 Let’s get you Connected with some fellow members who also have Essential Thrombocythemia. ET is usually a very slowly developing condition where the bone marrow can start overproducing platelets. It’s in a category of blood cancers called Myeloproliferative Neoplasms where any of the blood components can be affected. I’m sure you’ve been pouring over information to find out as much as you can about your diagnosis.
Here are a few more informational articles for you:

Myeloproliferative Neoplasm from MDAnderson.org
https://www.mdanderson.org/cancer-types/myeloproliferative-neoplasm.html
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https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315
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https://my.clevelandclinic.org/health/diseases/13350-thrombocytosis
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https://www.lls.org/myeloproliferative-neoplasms/essential-thrombocythemia

We have several conversations in the group with fellow members, @eileen11108 @1995victoria @rjgregory440 @chetalbin @annetterzam and many others in this discussion on jak2 mutations. That genetic mutation can contribute to ET developing. You may or may not have that but the treatments can be similar.

@shenriq started this discussion a few years ago but it is current with members. @bj87 @nohrt4me

~Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/

These are just a few to get you started. You can always type in key words such as ET, Essential Thrombocythemia, MPN (myeloproliferative neoplasms) in the search bar and it will bring up several more discussions.

If you haven’t already, I’d urge you to see a hematologist oncologist who specializes in blood cancers. This is treatable but it needs the correct diagnosis. Have you had any genetic testing done to see if you have the JAK2 mutation?

Hi I was just diagnosed with Primary Thrombocythmia. I actually think I have had this for a long time and it has just progressed to where a doctor finally started paying attention to my platelet count being elevated for so long. I now am considered high risk because I have had multiple vertebral dissections and recently cardiac microvascular disease which means slow flow of the blood to my heart. It causes shortness of breath and chest pain all of the time. Right now the meds they have me on doesn't work to help control anything. Having the new diagnosis of Essential Thrombocythmia is pretty much telling me why none of my heart medicine is working.
My question is how long have some of you had this cancer of the blood and what medication did chemo med did you start taking and how did you feel and where you able to continue to work? Thanks.