I've been reading this morning, I'm sorry. Over at Breast Cancer, But Doctor I Hate Pink, Ann blogged about being healthy enough for more chemo as she deals with progression of her metastatic breast cancer (and she is giving away a fitness watch). I started thinking (which can be a very bad thing) about the general yuckiness of chemotherapy and cancer treatment. I hated it. I don't know anyone who doesn't hate it. Its not fun. It makes you feel like crap, unable to eat, while 'curing' you.
Then I read about a nurse with metastatic breast cancer who opted not for cancer treatment but for palliative care. The more I read, the more I like the idea. If there is no cure, why are you spending so much time on trying to cure yourself? This route really appeals to me. She found a doctor who did not push traditional cancer treatment but went for palliative care. After five years since her diagnosis, this nurse is still feeling pretty good. And its much less expensive.
So if you had an incurable ailment where the only options were pretty nasty - radiation, chemo, surgery - and would weaken your body, why opt for trying to cure instead of making yourself feel as good as possible? Why go bankrupt when there isn't a cure? The bankruptcy isn't just your finances but your emotions and body too.
Showing posts with label cancer treatment. Show all posts
Showing posts with label cancer treatment. Show all posts
Apr 23, 2018
Important but scary clinical trials
We always hear about these new lifesaving drugs that are discovered and going through clinical trials. The good part of clinical trials is that they help other patients who get their diagnosis later on. It is also supposed to help the current patient who has a late stage disease for which there is no cure.
There is a scary side to clinical trials for these late stage patients. Will the new drug kill them or cause horrible side effects?
As patients we hear about clinical trials and how new drugs are always coming out and if we go on clinical trials they will help future patients. 'You are doing something good as well as trying to save your life.' That is the Rah-Rah-Take-One-For-The-Team attitude that pushes forth on the wave of clinical trials. You can do it! You are helping others!
But no one ever talks about the fact that the clinical trial drugs are very unproven, which are why they are in clinical trials, and not much is know about them. The official definition of a stage I clinical trial is:
"Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects."
So not much is know about its safety. Will it kill the patient? Will the side effects be horrible and weaken your body so you cannot handle other future medications?
I never really thought about this until I read this article, 'Breakthrough drugs are saving lives but wrenching souls', the other day.
There is a scary side to clinical trials for these late stage patients. Will the new drug kill them or cause horrible side effects?
As patients we hear about clinical trials and how new drugs are always coming out and if we go on clinical trials they will help future patients. 'You are doing something good as well as trying to save your life.' That is the Rah-Rah-Take-One-For-The-Team attitude that pushes forth on the wave of clinical trials. You can do it! You are helping others!
But no one ever talks about the fact that the clinical trial drugs are very unproven, which are why they are in clinical trials, and not much is know about them. The official definition of a stage I clinical trial is:
"Phase I: Researchers test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range, and identify side effects."
So not much is know about its safety. Will it kill the patient? Will the side effects be horrible and weaken your body so you cannot handle other future medications?
I never really thought about this until I read this article, 'Breakthrough drugs are saving lives but wrenching souls', the other day.
Apr 9, 2018
Gene editing to cure cancer
Okay, I admit I know about the 'genome project' but have basically ignored it because I did not understand much about it. And I still don't understand much about it. But because of what was learned about genomes and genes, there have been advances in what can now be done to treat cancer and other diseases.
So there is a little girl in England who was diagnosed with ALL (Acute Lymphoblastic Leukemia) shortly after her birth that was very aggressive and recurred seven weeks after treatment ended. They ran out of treatment options and as a last ditch effort, they used a gene editing tool to save her life. Since the treatment four months ago, she is doing well and is at home with her parents.
I don't really understand it well enough to explain it all. But you can read about it here.
Its too soon to tell if this is actually the cure that was hoped for and what the long term effects will be. There is no way of telling if this could some day work for more children with cancer.
What I do find interesting is that this represents a big advancement in cancer treatment and represents the first steps in what the future could be.
So there is a little girl in England who was diagnosed with ALL (Acute Lymphoblastic Leukemia) shortly after her birth that was very aggressive and recurred seven weeks after treatment ended. They ran out of treatment options and as a last ditch effort, they used a gene editing tool to save her life. Since the treatment four months ago, she is doing well and is at home with her parents.
I don't really understand it well enough to explain it all. But you can read about it here.
Its too soon to tell if this is actually the cure that was hoped for and what the long term effects will be. There is no way of telling if this could some day work for more children with cancer.
What I do find interesting is that this represents a big advancement in cancer treatment and represents the first steps in what the future could be.
Nov 27, 2017
Inaccurate Medical Tests
With new medical research, medical 'tests' are springing up all over to test for genetic defects in unborn babies, best treatments for medical conditions, and risks of certain diseases, among other issues. The problem is not all these tests are accurate and are leading to unnecessary surgeries, putting patients on unneeded medications, and raising medical costs.
The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.
"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.
Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.
But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."
The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:
One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”
According to the American Cancer Society:
"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."
There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.
My doctors have never mentioned either of these two tests for me. I do not think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.
The problem is when tests are run at a single facility so the FDA is relying on manufacturer reported problems including deaths or injuries to patients.
"Diagnostic tests are now regulated differently depending on where they were developed and manufactured. Products that will be sold to multiple labs — “commercial test kits” — are typically subject to FDA review before they go on the market.
Manufacturers are supposed to inform the government if they learn that their products may have contributed to a death or a serious injury, and they may have to notify the government if they recall defective products.
But for tests manufactured and used within a single laboratory, the agency has not actively enforced regulatory requirements, even though doctors around the country may submit samples to that lab for testing."
The tests included here are the OncotypeDX for breast cancer recurrence risk and the CA-125 test for ovarian cancer. Using the CA-125 test as an example:
One blood test to help detect ovarian cancer was never shown to be effective, the report said, but was used anyway. False-positive tests may have led to “unnecessary surgery to remove healthy ovaries.”
According to the American Cancer Society:
"In studies of women at average risk of ovarian cancer, using TVUS and CA-125 for screening led to more testing and sometimes more surgeries, but did not lower the number of deaths caused by ovarian cancer. For that reason, no major medical or professional organization recommends the routine use of TVUS or the CA-125 blood test to screen for ovarian cancer."
There are also studies out looking at the validity of these two tests and others. The current administration as well as much of Congress is looking at ways to close loopholes and require additional testing and validation of the tests to ensure patients are not harmed or subject to unneeded treatments.
My doctors have never mentioned either of these two tests for me. I do not think they are used at the hospital where I am treated either. Sometimes I have wondered why these tests were not offered. But now I am happy I didn't make any decisions based on their results.
Nov 6, 2017
Perceptions of cancer
After living with cancer for so long, I think I have a slightly different perception of cancer than many others.
On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of 'if you have your health, you have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.
My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.
When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.
I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.
I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?
So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.
It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.
And we need to remember that.
On Saturday I had a table with a craft show. I started chatting with the couple at the next table. The husband said something along the lines of 'if you have your health, you have everything'. To which I replied, well I don't have my health. He said he didn't either because he had had cancer three times. I asked him what kinds (because if you are a cancer person, you can ask other cancer people these questions). He said he had had prostate cancer and then basal skin cancer in two places.
My first thought was basal cell skin cancer? Is that very bad? Is it life threatening? Could it become life threatening? I don't know how bad it really is. I do not mean to dis his medical history but basal cell cancer doesn't strike me as being that bad. I think he was just more scared of the word 'cancer' than me at this point.
When I was first diagnosed with breast cancer, a group of us used to joke about what the worst thing a doctor could say to us. That we had cancer. But since we had all previously heard this, there was nothing worse they could tell us.
I have since learned that being told you have chronic, incurable, progressive diseases, cancer still is the worst thing you can be told but other things can come a close second. And I am not sure how I would react to another cancer diagnosis.
I am watching GMA as they talk about how former president Carter just announced that his melanoma which had spread to his liver in brain this summer, is no longer detectable after treatment. How does that sound? Cancer which had previously metastasized is no longer detectable? So is this a cure? Or has it become a chronic disease and not a terminal one?
So why does the word cancer continue to be so scary to some people? I used to work with a woman who would say that once she heard the word cancer, she would write people off and consider them done for as cancer was such a killer. I felt I should speak up to her and ask if she would write me off since I had cancer twice.
It is time our perceptions of cancer changed. Yes it is a killer still and will still continue to kill until a full cure is discovered. But now many people live for years and decades after a diagnosis. Before there were treatments such as chemotherapy and radiation, it was a death sentence. But now there is hope.
And we need to remember that.
Apr 3, 2017
The 'joys' and solitude of a second cancer
When diagnosed with a first cancer, we are all gobsmacked, appalled, overwhelmed, stunned, depressed, shocked, awed, overrun, and more as a result. You struggle through treatment and the ensuing body changes and emotions and slowly return to that so called 'new' normal and life resumes.
Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.
When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.
However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.
With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.
This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:
"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.
Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."
So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.
Then when cancer, the 'gift that keeps on giving', shows up again, you start all over again. It can be a dreaded recurrence or metastases or you can start all over again with a new cancer. Second cancers are not recurrences but new primaries. Such a joy. Not really.
When my second cancer showed up, in some ways it put me back to where I was emotionally but I was better prepared for it emotionally. And I was more proactive in coping with it. I joined support groups, on and off line, got therapy and worked hard at accepting this new health disaster.
However, I was basically the only one I knew who had had two cancers as me. Actually I know one other person in the world who had both breast cancer and thyroid cancer. (I know there are other people who have had these two cancers because it is not that uncommon that they show up in the same person but the only person I could connect to was in Europe.) We were both in the same online support group. She posted a message asking if anyone had had both and I responded.
With one cancer, you can find a ribbon to support you, a group of people like you with the cancer, and you can all bond with each other. Or you find a group of people have had a single cancer and you all can talk about the joys of treatment. But with a second cancer, you become an outlier. Most people only get one cancer. The multiple diagnoses are much fewer.
This is starting to change. New research (because we always need more research) shows that one in five cancer diagnoses are second cancers. In the 1970s only 9% of cancer diaganoses were second cancers. There are many reasons for this:
"About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.
Strange as it may sound, this is partly a success story: More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age."
So since I was young to get my first cancer, before age 20, and young to get my second cancer, before age 50, am I doomed to get more cancers? But at least it won't be as lonely as this second cancer rate continues to rise.
Aug 23, 2016
Who is with me on this?
I was totally disgusted but also happy when I read this article about this moron oncologist, Farid Fata, who told over 500 patients they had cancer and treated them unnecessarily. Or even if they had cancer, they continued to receive chemo long after they were in remission. The result? Hundreds of people with lasting health issues and even some deaths. Then I found this article with more background.
He also over billed Medicare and insurance companies for millions of dollars as patients received over 9,000 injections or infusions. Some received unnecessary chemo for over five years.
The only thing more despicable than people who claim they have cancer and don't to raise money for themselves, are doctors who mistreat patients like this.
I just want to get in line with all these other patients and smack him in the face for his lack of morals and crimes.Who is with me on this?
He also over billed Medicare and insurance companies for millions of dollars as patients received over 9,000 injections or infusions. Some received unnecessary chemo for over five years.
The only thing more despicable than people who claim they have cancer and don't to raise money for themselves, are doctors who mistreat patients like this.
I just want to get in line with all these other patients and smack him in the face for his lack of morals and crimes.Who is with me on this?
Sep 11, 2015
Low risk 'cancers'
So is it cancer or not? Sometimes they can't tell. For example which cases of DCIS will go on to turn into a potentially fatal breast cancer. Or which cases of thyroid lesions will actually grow into thyroid cancer? There is a growing epidemic of new cases of thyroid cancer and the question is which cases that are discovered will actually turn into cancer that could be fatal and which will not.
So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....
So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment? "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."
I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.
Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.
An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.
I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.
So what do you do? A lot of people fear the word cancer so much they just want it out of their body. One school of thought for the thyroid lesions that should not become a problem is to rename them "papillary lesions of indolent course". That just sounds so 'benign'.....
So if the word 'cancer' is taken out of the discussion, active surveillance might be better. I mean why go through surgery, etc for something that doesn't require treatment? "In many cases, active surveillance may be preferred over surgery by patients with small, relatively benign cancers that could take decades to grow to any appreciable size or cause life-threatening problems."
I have so many body parts currently under 'active surveillance' for multiple issues that I have lost count. I would be happy with that for additional body parts instead of surgery, chemo or radiation. This is much easier with thyroid cancer where the area can be easily ultrasounded and palpated to monitor growth. But not so much with DCIS where breast cancer can be much quicker to grow and harder to find.
Language can have a big impact on people's opinions of their diagnosis. The word cancer strikes fear into most people's brain. It paralyzes them, they are instantly going to die! But as more and more is learned about cancer, its detection, and treatment, maybe the best bet is to retrain our brains as to what will kill us and what won't.
An example is when AIDS was discovered it was instantly a terminal disease. Now people are living for decades with it and it is now chronic and not fatal. But the term AIDS still strikes fear into many but that is slowly calming.
I hope that the word 'cancer' also does not always strike fear into all as more and more of us are still around to talk about our diagnoses decades later.