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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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Yep, I suppose I am. As I have mentioned, I had untreated ET from age 52 that was discovered after an accident ten years later. By then, my platelets numbered in the millions, while they been around 450,000 at age 52. During that time, I had been actively pursuing street photography. The difference between me and everyone else was that I have always looked younger than I am. Still do. When I met my hematologist in 2014, he said, "Ummm.....you don't look like 62." I explained that I had always appeared younger than I am. At that time, people who were in their early thirties assumed I was their age. I was in my mid-thirties when people stopped taking me for a teenager. Even now, as I am approaching my 74th birthday in October, people are just beginning to see me as 60. In fact, I reminded my hematologist, last year, of his assessment of my age when we met and I said, "So what do I look like now?" Without a pause, he said, "Sixty." I laughed and said, "So, I still don't look 62." I don't know what that has to do with my platelets, exactly, though.
@virginiafizz I've been eating a paleo diet since 2007. In 2009, my doctor at that time told me I have kidney disease. 17 years later, I still don't have any symptoms of the disease. I was asked by a nurse about five years ago if I'm on dialysis and I said no. She said, "But it says you have kidney disease." Yeah...well, people say lots of things about me that make no sense. Lots of assumptions about me, but very little data to back it up. I've had four doctors since 2009, all telling me I have this disease that I still don't have any symptoms of and all they point to for evidence is my GFR. Oh, excuse me....eGFR. Now they have to estimate it, for some reason.
@virginiafizz Well, frankly, I don't believe cholesterol has anything to do with heart health. In fact, this has been reported (that it has no bearing upon heart health) within the last two years. I never believed it did and I stayed away from Statins, especially, which are dangerous.
@garyr443 My doc said it doesn't qualify as a blood cancer. I'm stickin' with that reply.
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1 Reaction@panamsandy Hmm... do you know how he meant by that? In a way, I think I see what he may be thinking, but I'm not sure. I'm not attached to the term, myself. In fact,I refrain from referring to ET as a blood cancer among the people I live with (seniors home), as I don't want people coming to me and saying, "Oh, I'm so sorry to hear you have cancer!" It's not like surgeons are going to be removing any of my body parts, like they did when my little sister had breast cancer.
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1 Reaction@1995victoria So I was told, and yet, I've had no clots. In fact, my hematologist always asks whether I have had any clots and I always answer no. I'm pretty sure I'd know about it by now if I did.
@garyr443 My Doctor tells me that it is not cancer. I dont think anyone can decide. Her reasoning is that it is not curable but it can be managed with medication. I take hydrea 3 days a week 500mg and my plates were 295 this week. I still have random symptoms but they come and go. The highest mine ever got were 651 I also have the Jake 2 mutation as well as ET.
@vickieannb57 That it can be managed with medication does set ET apart from most cancers. Even with medication (and I can't think of any that exist for cancer), the disease will progress until you die. My sister tried everything for her breast cancer, over a period of twenty years, and still died from it at 58. So, agreed on that. If ET is a cancer, it is a cancer of the blood, as most sources say. None us is having surgeries or the removal of any body parts, as would be the case with cancers. So, maybe it makes better sense to call ET a blood disease.
ET was reclassified as a cancer of the bone marrow by the World Health Organization in about 2006. Some oncologists do not accept the reclassification, some may not know about it, some just don't want to deal with patients getting emotional about the c-word.
Your life insurance company likely classifies it as cancer, and may deny your application to increase your life insurance on that basis or to charge you higher premiums.
Many cancers now are chronic, in that they are managed by meds vs surgery/chemo/radiation (what my old oncologist called slash/burn/poison). There was a recent article in the Washington Post a few years ago about this. Hopefully people won't be paywalled out:
https://www.washingtonpost.com/health/2023/06/17/cancer-treatment-advances-chronic-disease/
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3 Reactions@nohrt4me Yep, somone here told me her doctor disagrees with that classification. Hope's he right.