JAK2 is the mutation that causes myeloproliferative neoplasms (cancers) like ET, PV, and MF.
A small number of researchers don't like the cancer designation for ET for reasons that are beyond my expertise to explain. And you do run into hematologists who still call it a blood "disorder," which may indicate they are working on outmoded info about these diseases.
JAK2 is the mutation that causes myeloproliferative neoplasms (cancers) like ET, PV, and MF.
A small number of researchers don't like the cancer designation for ET for reasons that are beyond my expertise to explain. And you do run into hematologists who still call it a blood "disorder," which may indicate they are working on outmoded info about these diseases.
I find that younger hematologists, perhaps with more current knowledge and data, call ET a "disorder" and disagree with the WHO classification of "cancer".
I find that younger hematologists, perhaps with more current knowledge and data, call ET a "disorder" and disagree with the WHO classification of "cancer".
More current knowledge such as ...? I get updates from the MPN Research Foundation and other MPN groups, and I know of no such knowledge afoot. Please do share this more current knowledge!
Classification does not change the way ET works: a spontaneous genetic mutation causes bone marrow to overproduce platelets with abnormal nuclei. Without treatment, platelets can eventually rise high enough to cause clots, cause acquired von Willebrand's, and fibrosis in the marrow that messes with other blood cell levels.
More current knowledge such as ...? I get updates from the MPN Research Foundation and other MPN groups, and I know of no such knowledge afoot. Please do share this more current knowledge!
Classification does not change the way ET works: a spontaneous genetic mutation causes bone marrow to overproduce platelets with abnormal nuclei. Without treatment, platelets can eventually rise high enough to cause clots, cause acquired von Willebrand's, and fibrosis in the marrow that messes with other blood cell levels.
My comment is an opinion based on conversations I had with hematologists whose credentials I respect soon after receiving my JAK2 bone marrow results. In vet school, we were required to purchase a computer instead of a microscope to start our freshman year so we could learn how to find and evaluate information. We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts.
I am not arguing the pathophysiology of ET. That's basic science of cells and cytology. You (and some organizations) and I disagree on whether to call it "cancer." I've had breast cancer and bilateral mastectomy. I am not afraid of the C-word. I choose to listen to hematologists (my personal doctor and others) who told me adamantly, "You do NOT have cancer. You have a blood disorder." Others in this group have been told the same thing by their doctors. Let's agree to disagree.
Indeed. My GP said the same thing - my haematologist/oncologist however intimated that there were other of his patients”worse” off than myself (unsympathetic perhaps), and I could see his point, but it’s all really relative to how one lives ne’s own conditions and side affects (good days, bad days)…
My comment is an opinion based on conversations I had with hematologists whose credentials I respect soon after receiving my JAK2 bone marrow results. In vet school, we were required to purchase a computer instead of a microscope to start our freshman year so we could learn how to find and evaluate information. We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts.
I am not arguing the pathophysiology of ET. That's basic science of cells and cytology. You (and some organizations) and I disagree on whether to call it "cancer." I've had breast cancer and bilateral mastectomy. I am not afraid of the C-word. I choose to listen to hematologists (my personal doctor and others) who told me adamantly, "You do NOT have cancer. You have a blood disorder." Others in this group have been told the same thing by their doctors. Let's agree to disagree.
I am so sorry you have dealt with breast cancer. Many of us have had acute cancers and understand that chronic blood cancers are very different.
What you choose to believe about ET and how to treat it are up to you, of course. But those who reject the "cancer" label often confuse and make anxieties worse for newly diagnosed patients or for those whose ET becomes brittle and stops responding to chemo.
The Mayo Clinic is not the place I expected to have to wade through denials of current medical thinking, or to get unsubstantiated info on "natural" treatments rife on some other threads. I can get that from googling stuff. So I am dismayed by people here who are pushing non-mainstream views and treatment.
None of that is helpful to my trying to deal with my own symptoms and treatments and runs counter to the aims of a support group.
My comment is an opinion based on conversations I had with hematologists whose credentials I respect soon after receiving my JAK2 bone marrow results. In vet school, we were required to purchase a computer instead of a microscope to start our freshman year so we could learn how to find and evaluate information. We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts.
I am not arguing the pathophysiology of ET. That's basic science of cells and cytology. You (and some organizations) and I disagree on whether to call it "cancer." I've had breast cancer and bilateral mastectomy. I am not afraid of the C-word. I choose to listen to hematologists (my personal doctor and others) who told me adamantly, "You do NOT have cancer. You have a blood disorder." Others in this group have been told the same thing by their doctors. Let's agree to disagree.
"We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts."
I am so sorry you have dealt with breast cancer. Many of us have had acute cancers and understand that chronic blood cancers are very different.
What you choose to believe about ET and how to treat it are up to you, of course. But those who reject the "cancer" label often confuse and make anxieties worse for newly diagnosed patients or for those whose ET becomes brittle and stops responding to chemo.
The Mayo Clinic is not the place I expected to have to wade through denials of current medical thinking, or to get unsubstantiated info on "natural" treatments rife on some other threads. I can get that from googling stuff. So I am dismayed by people here who are pushing non-mainstream views and treatment.
None of that is helpful to my trying to deal with my own symptoms and treatments and runs counter to the aims of a support group.
I am truly sorry if my comment causes you distress, I have found much good information in this support group from others who've dealt with symptoms ET and side effects of my current treatment hydroxyurea (Hydrea). The view that ET is not cancer not "unsubstantiated info." It is shared by many hematologists who don't agree with the current classification. Sharing what we are hearing from our doctors is part of what I appreciate and expect from a support group.
The classification of ET is a very small point in the over all scheme of things. I hope you have healthy days, successful treatment, and peace of mind in the new year.
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Yes, MPNs are slow-growth blood cancers. JAK2 is not a blood cancer itself but is the gene mutation marker sought for diagnostic purposes.
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6 ReactionsJAK2 is the mutation that causes myeloproliferative neoplasms (cancers) like ET, PV, and MF.
A small number of researchers don't like the cancer designation for ET for reasons that are beyond my expertise to explain. And you do run into hematologists who still call it a blood "disorder," which may indicate they are working on outmoded info about these diseases.
-
Like -
Helpful -
Hug
5 ReactionsI find that younger hematologists, perhaps with more current knowledge and data, call ET a "disorder" and disagree with the WHO classification of "cancer".
More current knowledge such as ...? I get updates from the MPN Research Foundation and other MPN groups, and I know of no such knowledge afoot. Please do share this more current knowledge!
Classification does not change the way ET works: a spontaneous genetic mutation causes bone marrow to overproduce platelets with abnormal nuclei. Without treatment, platelets can eventually rise high enough to cause clots, cause acquired von Willebrand's, and fibrosis in the marrow that messes with other blood cell levels.
-
Like -
Helpful -
Hug
9 ReactionsMy comment is an opinion based on conversations I had with hematologists whose credentials I respect soon after receiving my JAK2 bone marrow results. In vet school, we were required to purchase a computer instead of a microscope to start our freshman year so we could learn how to find and evaluate information. We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts.
I am not arguing the pathophysiology of ET. That's basic science of cells and cytology. You (and some organizations) and I disagree on whether to call it "cancer." I've had breast cancer and bilateral mastectomy. I am not afraid of the C-word. I choose to listen to hematologists (my personal doctor and others) who told me adamantly, "You do NOT have cancer. You have a blood disorder." Others in this group have been told the same thing by their doctors. Let's agree to disagree.
-
Like -
Helpful -
Hug
5 ReactionsIndeed. My GP said the same thing - my haematologist/oncologist however intimated that there were other of his patients”worse” off than myself (unsympathetic perhaps), and I could see his point, but it’s all really relative to how one lives ne’s own conditions and side affects (good days, bad days)…
-
Like -
Helpful -
Hug
3 ReactionsI am so sorry you have dealt with breast cancer. Many of us have had acute cancers and understand that chronic blood cancers are very different.
What you choose to believe about ET and how to treat it are up to you, of course. But those who reject the "cancer" label often confuse and make anxieties worse for newly diagnosed patients or for those whose ET becomes brittle and stops responding to chemo.
The Mayo Clinic is not the place I expected to have to wade through denials of current medical thinking, or to get unsubstantiated info on "natural" treatments rife on some other threads. I can get that from googling stuff. So I am dismayed by people here who are pushing non-mainstream views and treatment.
None of that is helpful to my trying to deal with my own symptoms and treatments and runs counter to the aims of a support group.
-
Like -
Helpful -
Hug
10 ReactionsTY for your voice of reason, nohrt4me.
Your explanation of ET helps us understand how it meets the description of cancer:
a disease caused by an uncontrolled division of abnormal cells in a part of the body
I am grateful not to have an acute cancer, but accepting that I have a chronic cancer motivates me to take the HU and keep my CV system strong.
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7 Reactions"We were told that vetting articles published in peer-reviewed journals and books published by academic publishers took so much time that their information could be years old by the time they were issued. When I want the latest information or opinion, I consult directly with the experts."
Very true.
Source: Three year NASA research fellowship.
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1 ReactionI am truly sorry if my comment causes you distress, I have found much good information in this support group from others who've dealt with symptoms ET and side effects of my current treatment hydroxyurea (Hydrea). The view that ET is not cancer not "unsubstantiated info." It is shared by many hematologists who don't agree with the current classification. Sharing what we are hearing from our doctors is part of what I appreciate and expect from a support group.
The classification of ET is a very small point in the over all scheme of things. I hope you have healthy days, successful treatment, and peace of mind in the new year.
-
Like -
Helpful -
Hug
5 Reactions