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Essential Thrombocythemia: Looking for information and support
I was recently diagnosed with Essential Thrombocythemia, a rare incurable blood cancer. Platelet count aside, I am asymptotic. This current condition morphed from (constitutional) thrombcytosis, something I’ve lived with for 25+ years. While the new diagnosis was the result of a bone marrow aspiration and biopsy, my age was an additional factor, which was completely disarming, having been walking around unwittingly for the past 8 years! While at the low end of risk for clots, heart-attacks and stroke, nothing has truly changed - except the “C” word. No chemo yet, but active discussion about hydroxyurea. Uncertainty about ET is anxiety provoking and swoethatl, but I’m feeling betrayed by my blood. I’m looking for all information about ET, the chemo and support.
Thanks!
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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 🙂
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10 ReactionsMel, 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.
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4 ReactionsMine 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.
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4 ReactionsWelcome 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
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5 ReactionsHang 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.
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7 ReactionsHi
I’ve recently been diagnosed with ET, I have never heard of it before my diagnosis and would love to chat with others who have it.
Last year in October I was have what I though was menopause symptoms. Fatigued all the time, itchy and then severely bruising from scratching, night sweats and weakness. I had bloods done and it came back with my platelets count of 690 and my white blood cells slightly raised as well.
I was referred to a haematologist who requested a full blood count and dna test. Unfortunately the haematologist is 2 hours away from where I live so I had phone appointments. All I got told on the appointment was I’m limited to what I can say over the phone, your bloods not normal, you need to have a CT scan which you can get the referral from Your GP. Had the CT scan all was clear of cancer. I had been in meantime really bad fatigued, multiple times being so weak and tired I couldn’t do anything but sleep, twice I had to go home from work because of it. I tried getting an earlier appointment booked with the haematologist, was told they would get back to me and never did ! Day before my scheduled appointment it was cancelled and I was told your next one will be sent to you . Needless to say I was livid !
Finally had an appointment sent out and it was a different haematologist. He was brilliant straight to the point explained things well and sent me out some information. So here I am finally diagnosed and taking Hydrea 3x a week.
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6 ReactionsAlso, I might add that a few years ago they thought it may have morphed into Myelofibrosis since I had so much pain in my legs but that was ruled out at least for now with another Bone Marrow Biopsy. I had Back problems and hips wee deteriorated. It is hard to say whether the Hydroxyurea hastened the bone deterioration. No one has definitive answers for a lot of my questions but I had both hips replaced and a laminectomy and fusion of L 4-5 back surgery and it has helped the leg pain. I have been on the Hydrea for 9 years in May. I take the usual 2 daily with 3 taken on three days a week. Otherwise my platelets creep up. My oncologist has come up with this dosage plan and it seems to work to keep my platelets about 500-600
which they say for me seems to do the job. They keep an eye on the Red Cells and White Cells as well which stay borderline low due to the Hydrea affecting all three. I am not in favor of switching to the alternative treatment Anagrelide as it is way more expensive and I have heard from others that have had too many side effects. As long as the Hydrea is advised, is working and not interfering too much with the Red and White cell production I will continue on it. But I am aware that there are problems with all of it. My age (73) and other conditions are also factors I have to consider.
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7 ReactionsDefinitely ET, as per nurse today. Am finding out whether are blood clotting factors.
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2 ReactionsMy DNA was not done with bone marrow, just blood work, I think out of Florida. It has been since about 2011 without being clarified as ET or reactive, although I have not asked; just trusting the medical community. I would agree that if the reactive cause has not been found/cured since 2011, it is probably ET, but I do agree with you that this could be "wrong." It is interesting, as I have found in this service of Mayo Clinic, that thrombocytosis is sometimes considered a cancer by insurance companies, especially as they treat it with cancer drugs. I hope that I do not develop leukemia nor fibrosis of the marrow. I suppose that I could be considered an alcoholic which could be causing the elevated plateletes, but surely there would be a biological/social proof of that by now, other than the platelet count?
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2 ReactionsI was diagnosed right away with Essential Thrombocythemia. (ET) having 1,250,000 platelets when first diagnosed. I had the Bone Marrow Biopsy and comfirmed JAK 2 so I guess if it is confirmed that gene mutation and no other disease caused it, it is ET. That is my understanding. But I could be wrong. Seems from what I have read that if another disease causes the over production of platelets, it might be possible to reverse it or stop the proliferation of the platelets, but with ET it is not curable, only treatable.
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