A good question is: What symptoms might I have that I should call the office to report. I have had ET for 17 years, and I am still trying to get a straight answer for this!
Also ask if you need to coordinate ET care with hemo if you needed surgery or treatment for something like a heart condition or diabetes. Never know what's around the corner.
If you have really great insurance and are HU averse (saw yr post on another thread), ask about Besremi (interferon injections). They are not without side effects, but some here are doing very well.
@nohrt4me I’ve Had ET two yrs Now On HU But Started Besremi two Wks Ago 50mg Have Drs Appointment March 27th See What My Blood Counts Are So Far No Side Affects Assuming She Will Up the Dose tapering Off the Hu
@nohrt4me I’ve Had ET two yrs Now On HU But Started Besremi two Wks Ago 50mg Have Drs Appointment March 27th See What My Blood Counts Are So Far No Side Affects Assuming She Will Up the Dose tapering Off the Hu
@hudson2019 Just a nosy question, so feel free to ignore: If you are in the States, how are you paying for Besremi? It is off-label for ET, and most insurance companies balk at paying for it unless a) you are of childbearing years, b) your doc documents unbearable side effects from HU (leg ulcers, for ex), c) the manufacturer provides a hardship coupon of some sort, or d) you are wealthy enough to pay out of pocket.
Are there tricks? I have had ET for 17 years, and I do wonder what happens if HU (which still works fine for me) stops working or turns on me.
Hi @chimo
I don’t see that anyone ever answered your question so let me try. I’ve heard of ET being called cancer because of its over production quality. I’ve heard it described as chronic cancer because it is treated like an ongoing disease which is managed with medication and not necessarily deadly. Disease is a rather broad term that refers to an illness of any sort (e.g. anything that causes dis-ease or not well) So I think you could call it cancer, chronic cancer and a disease.
Without success, I've been looking for a great recent comment from nohrt4me. As I recall, Jean pointed out that while some doctors say ET has no symptoms, others admit that it does.
And that some doctors call ET a "disorder" and some call it a "cancer."
Because of the proto-oncogene MPL, my body is producing abnormal cells. I must take a chemo drug as long as I live. So to me there's no ambiguity: I have cancer.
If calling ET a disorder rather than a cancer makes anyone feel more positive about their lives, wonderful!
Unfortunately, though, this is not just a word game. That ET and other MPNs were long classified as disorders, not cancers, is why so few research dollars have been devoted to them.
And if MPNs are just disorders, then hey! Insurance companies can refuse to pay for treatment. This is a tragic problem in some countries.
@hudson2019 Just a nosy question, so feel free to ignore: If you are in the States, how are you paying for Besremi? It is off-label for ET, and most insurance companies balk at paying for it unless a) you are of childbearing years, b) your doc documents unbearable side effects from HU (leg ulcers, for ex), c) the manufacturer provides a hardship coupon of some sort, or d) you are wealthy enough to pay out of pocket.
Are there tricks? I have had ET for 17 years, and I do wonder what happens if HU (which still works fine for me) stops working or turns on me.
@nohrt4me I am on Besrimi and I definitely cannot afford it. I got a grant through the specialty pharmacy at the hospital. One Rx will meet my catastrophic deductible for the year then my insurance covers it
Without success, I've been looking for a great recent comment from nohrt4me. As I recall, Jean pointed out that while some doctors say ET has no symptoms, others admit that it does.
And that some doctors call ET a "disorder" and some call it a "cancer."
Because of the proto-oncogene MPL, my body is producing abnormal cells. I must take a chemo drug as long as I live. So to me there's no ambiguity: I have cancer.
If calling ET a disorder rather than a cancer makes anyone feel more positive about their lives, wonderful!
Unfortunately, though, this is not just a word game. That ET and other MPNs were long classified as disorders, not cancers, is why so few research dollars have been devoted to them.
And if MPNs are just disorders, then hey! Insurance companies can refuse to pay for treatment. This is a tragic problem in some countries.
@janemc I recently went to apply for more life insurance. They wanted to know if I'd had cancer in the last 5 years. No idea how the insurance company classifies ET, but if it gives them leverage to deny coverage, I'm guessing they call it cancer.
@janemc I recently went to apply for more life insurance. They wanted to know if I'd had cancer in the last 5 years. No idea how the insurance company classifies ET, but if it gives them leverage to deny coverage, I'm guessing they call it cancer.
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@nohrt4me I’ve Had ET two yrs Now On HU But Started Besremi two Wks Ago 50mg Have Drs Appointment March 27th See What My Blood Counts Are So Far No Side Affects Assuming She Will Up the Dose tapering Off the Hu
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2 Reactions@hudson2019 Just a nosy question, so feel free to ignore: If you are in the States, how are you paying for Besremi? It is off-label for ET, and most insurance companies balk at paying for it unless a) you are of childbearing years, b) your doc documents unbearable side effects from HU (leg ulcers, for ex), c) the manufacturer provides a hardship coupon of some sort, or d) you are wealthy enough to pay out of pocket.
Are there tricks? I have had ET for 17 years, and I do wonder what happens if HU (which still works fine for me) stops working or turns on me.
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2 ReactionsIt's both. It is a rare blood cancer, but also a blood disorder.
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1 ReactionHi @chimo
I don’t see that anyone ever answered your question so let me try. I’ve heard of ET being called cancer because of its over production quality. I’ve heard it described as chronic cancer because it is treated like an ongoing disease which is managed with medication and not necessarily deadly. Disease is a rather broad term that refers to an illness of any sort (e.g. anything that causes dis-ease or not well) So I think you could call it cancer, chronic cancer and a disease.
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Like -
Helpful -
Hug
1 ReactionWithout success, I've been looking for a great recent comment from nohrt4me. As I recall, Jean pointed out that while some doctors say ET has no symptoms, others admit that it does.
And that some doctors call ET a "disorder" and some call it a "cancer."
Because of the proto-oncogene MPL, my body is producing abnormal cells. I must take a chemo drug as long as I live. So to me there's no ambiguity: I have cancer.
If calling ET a disorder rather than a cancer makes anyone feel more positive about their lives, wonderful!
Unfortunately, though, this is not just a word game. That ET and other MPNs were long classified as disorders, not cancers, is why so few research dollars have been devoted to them.
And if MPNs are just disorders, then hey! Insurance companies can refuse to pay for treatment. This is a tragic problem in some countries.
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Like -
Helpful -
Hug
3 Reactions@nohrt4me I am on Besrimi and I definitely cannot afford it. I got a grant through the specialty pharmacy at the hospital. One Rx will meet my catastrophic deductible for the year then my insurance covers it
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3 Reactions@janemc I recently went to apply for more life insurance. They wanted to know if I'd had cancer in the last 5 years. No idea how the insurance company classifies ET, but if it gives them leverage to deny coverage, I'm guessing they call it cancer.
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4 Reactions@nohrt4me
Yes, somehow with insurance companies, the house always wins.
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1 ReactionIt's both. It's not as horrible to live with as it sounds like.
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5 Reactions