Essential Thrombocythemia: Looking for information and support

I had hair thinning and some black streaks in my nails on HU. Nail discoloration and hair thinning are definitely things I have heard other HU patients talk about, too. Your mom might want to ask the doc if these symptoms will ease up with the lower dose of HU. My hair thinning stopped and nail streaks grew out over time.

I also had hair thinning and nail splintering. My hair is straighter, but not falling out. The nail splintering comes and goes. The worst HU side effect involved my bathroom, luckily my gut finally adjusted after a year. I never had any symptoms of ET Jak2, just elevated platelets that sent me for further testing. I just hope HU doesn't hurt my brain or organs. Recently I had my second shingles shot which might have lowered my platelets to almost bottom level of "normal" range. I also take baby aspirin. Don't want any clots causing stroke or heart attack

I took hydroxyurea for about 30 years due to anemia and high platelets. The last couple years I’ve had very low red blood cells (hemoglobin as low as 6 and 7 with hematocrit as low as 20. When it gets to 22 or 23 I get an infusion of red blood cells which takes it up to 24 or 25. I can function normally at that level and do anything I want. Just not for very long. I get tired. The highest it’s ever been is 27. I was switched to anagralide this past year. I have never had any other symptoms and am quite healthy at 87 years.

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.

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?

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.

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 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?

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!

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!!!