Essential Thrombocythemia: Looking for information and support

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.
https://connect.mayoclinic.org/discussion/jak2-mutation-effects-and-questions/?pg=12#comment-194373
@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.

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.

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 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.

Hello all, my mom just got diagnosed ET, and I found this forum as I was researching online. She is 65 and the doctor put her on Hydrea 1000mg daily which helped lower her platelet count from 1,100,000 to about 300,000. Now she is on a lower dose 500mg daily. I saw several mentions on the forum that they had no side effects while taking Hydrea, but my mom’s hair is falling out and her nails turned black. I am wondering if anyone is going through the same. Best wishes to all.

nohrt4me | @nohrt4me It feels good to talk to people going through the same thing. I started listening to youtube stories about different cancers, but it's missing that" real connection" . It's a mystery ride and it feels good that there is a group of people who are discovering and trying to uncover the unknown. What a ride we are going through! Thank you sharing your up's and down's, it helps. It sounds like HU has side effects but our disease have created new symptoms. How we deal with "total ray of management of mysteries, stress, symptoms and discovering the unknow is a path we are all taking together! Thank you for you courage and understanding! You are a blessing!

I have had a bit of trouble with heartburn since I started HU. I didn't link it with the meds, but maybe there is a connection. My spleen isn't enlarged, and I don't have abnormal LDH numbers, though. I wonder if the inflammation from the ET itself causes the acid reflux. At one of the MPN lectures a year ago, I learned that ET patients are more prone to gout. Doctors are still learning about this family of diseases ...