Essential Thrombocythaemia

Hang in there. I went undiagnosed for nearly a year. I have had blood work and a bone marrow test. Results were that I have JAK2 and ET. I also was very tired and some days stayed in bed all day. (today was one of those days) I was also put on Hydrea 500 mg 3x's per week. I was on that for 6 months and had an allergic reaction then put on anagralide which I cannot take either. I am now on Eliquis 2x's a day. I don't mean to sound like a Negative Nellie there are a lot of people that have been on HU for several years.

Don't get discouraged. I didn't know anyone with the dx except for people I have met on this website. Listen to your body and when you are tired rest.

Praying for all of us with this dx, Wishing you the best.

Welcome Mel@2523:
You did not mention having a bone marrow biopsy. It would tell a lot. It is good you started on Hydroxyurea three days a week. It gives your body a chance to adjust.

If you search on the website you will find many discussions on the subject.

Best wishes, Eileen

Mine came out of nowhere - last September I started with severe GI issues after a bout of food poisoning and had a myriad of blood work and other diagnostic testing to sort that out - which resulted in a diagnosis of Collagenous Colitis. The blood work also showed high platelets. My PCP was astute enough to contact a hematologist-oncologist for guidance (they are both at the same regional medical center which encourages coordination among the practitioners). He told her what other bloodwork to order and through that we discovered I have the JAK2 genetic mutation. I then saw the hematologist who was pretty sure I had ET but wanted to rule out other blood disorders so ordered a bone marrow biopsy (which is not as scary as it sounds). I was fortunate that everything else looked good and I have been on 500 mg Hydroxyurea 2x a day since last November. My platelets dropped from 792 to just under 200 and I was able to reduce to taking HU 4 days a week. At this point I've leveled out at 220-230 and have had only minimal side effects from the HU. I'm 69 aside from the ET and colitis (and pancreatic enzyme insufficiency which was also diagnosed last fall), I'm otherwise in good health. I do experience some fatigue but am able to remain active and go to exercise classes at my gym, bicycle and walk regularly.

Mel, you have really been through the wringer.

Very few of us have ever even heard of ET prior to our diagnosis.

What's scary is that it's equally mysterious to most of our PCPs.

That you're getting good care from a specialist is wonderful.

And that you've found this forum is great too. This is where we learn so much from one another.

I can relate to so much of the OP's story!

Have had ET (CALR+) for 15 years, but undiagnosed for first 5 years. Fatigue was waved away as menopause and high platelets as stress until they hit 650 and an alert nurse said, let's ask doctor to look into this.

Age 70 now. Doing OK. Hydroxyurea helped with fatigue. I am considered safe and stable in 400s now.

My dad also had ET, so I knew what the score was and was not overly alarmed by the diagnosis. ET probably won't kill you, but it adds an extra layer of challenges to life. One of them is finding a doctor who gives you clear info.

I ran a support group and blog on FB for several years after diagnosis, but there is better info on sites like this that are monitored by Mayo volunteers.

I learned that the quicker people can get diagnosed and onto a monitoring schedule, get over their fear of chemo, and stop experimenting with "natural" treatments, the better their outcomes.

Exercise and a heart-healthy diet that addresses clot issues can help maintain circulation and reduce with fatigue.

The rest we all know: quit smoking, lose weight, avoid regular alcohol use, wear sensible shoes, put a sweater on when you're cold, and come in out of the rain 🙂

I was diagnosed in 2020 and have been on HU. The Leukemia/LymphomaSociety has a wonderful website and will send you info in mail. http://www.LLS.org Knowledge is Power.....all the best....

I also was diagnosed with ET given Hydrea 500mg every other day. I have been on this medication for three years.
my platelets went from 700 down to 350.
I still do not understand why they call this blood disease a form of cancer....however, i just listen to my hematologist and take blood tests every six months.

hope this helps.

ET is a cancer because our bodies are producing cells abnormally.

For most ETrs, this is due to a mutation of one of the three proteins that govern platelet production. When those "driver" proteins mutate, they push our bone marrow into frantic over-production of platelets.

Cancer is a scary word, and so is chemo.

I personally find that accepting I have a chronic cancer motivates me to take my HU, and to work out every day to keep my cardiovascular system strong.

Knowing I'm not alone with this weird gremlin helps tremendously too!!!

Also the Leukemia/Lymphoma have wonderful in-person conferences, so if you get on the email list, you will be notified if any conferences in your area. ET is one of the MPN (MyeloProliferative Neoplasm)......It is also important to have regular blood tests, because it can progress to a worse neoplasm/cancer, ET is considered a chronic cancer. All the best......

For what it’s worth, some docs call this a cancer while others say it’s a neoplasm. Work with your heme doc. Ask questions. In some cases, a bone marrow biopsy may be recommended. For others, it might be a DNA / genetic test.
Suggest you do an online search for the MPN Foundation. Lot’s of good info!
Best wishes,
Sherry
ET w/Jak2