Let me share with you how I live daily with Martin's cancer. As you may imagine, I lived through all kinds of emotions, amd I'll continue to do so: shock, anger, denial, sadness ...
These emotions are surfacing at any time without warning. A song, a look, a hug, a comment and BANG! But eventually I was able to accept them and say tell myself: they are only passing through. Then we return to our life, one child asks for a glass of milk and life continues.
Luckily life gave me a great mental and physical strength, perhaps in anticipation of what would happen later. That determination combined with Martin's made us break down doors to get answers. We really took over the illness and as you know so well "no" was never an option for us. The most amazing is that the days when the strenght dips in one of us, the other hastened to restore it. Martin and I are definitely an amazing team.
The disruption that followed the diagnosis in July 2008 quickly gave way to a new routine. One comes to accept the disease, it is part of the family dynamics and it revolves around it. I assure you that the days where he is top shape, we take full advantage of it. The other days we surround him with our love while he recovers. My sadness on thos difficult chemo days is now replaced by my appreciation of the fact that he is still with us and he leads the battle with such humility and courage. I consider myself so lucky to have him in my life.
The most difficult for me in this adventure is the uncertainty. The resulting insecurity of our children saddens me. Anecdote, during a recent business trip to Toronto, my daughter called me several times saying: "But Mom when are you coming back? What happens if Dad is sick without you, we're children and can not care for him. "I did my best to reassure her.
When people ask me the question but how do you do it? I'd say my salvation over the past 14 months was to keep busy, taking charge of the medical file, taking care of my loved ones, my career keeps me busy and of course running. The more I keep busy with projects, the better for me.
In conclusion, I would encourage you to break your silence and show your support by writing to us. I know many of you read the blog and send positive vibes. If only you would see the smile on Martin's face when one of his faithful readers leaves a word of encouragement. It feeds him for the day!
We continue the battle and we need you all. After all, strength is in unity ;-)
Yours truly,
Marie-Josee
The wife of a cancer survivor
Sunday, September 20, 2009
Friday, September 11, 2009
How much is life worth?
It's Friday 4:00 PM. François just disconnected my 5-FU bottle. I have not slept as much as I would of liked today, but now that my bottle is off I'll try to get an hour of sleep (after writing this of course).
I got feedback on my last blog. The consensus is that I should write more regularly, even if only to say that all is well. So I told myself that I would try to have some regularity, say once a week.
Yesterday, Barry Stein sent me an article published in the Globe and Mail, written by Andre Picard, which was attached to his reply as president of the Colorectal Cancer Association of Canada. My wife was furious after reading the article and has also written to the journalist. The latter replied almost immediately (it was midnight). For my part, the article kinda upset me a little. As my wife mentioned in her email to the journalist, to be able to write this kind of thing you can't possibly have lived the horrors of cancer, near or far.
The article is titled: We do have to put a price on life. You can read it by clicking the title or just keep reading because I reproduce the article and the response from Barry and Marie-Josée's e-mail.
Before let me give you my opinion which I have not sent to Mr. Picard. Every citizen is entitled to his opinion and as a journalist he has the right to try to raise a debate on a matter of public interest because our health system is financed by the government (so all of us). However I find unhealthy to oversimplify complex ethical questions. The basis of his text is an article published in the United States by two oncologists who supposedly analyzed the cost-benefit of the use of certain new drugs against cancer. Mr. Picard does not seem to have made a critical reading of the text in question because he has not made the effort to check prices in Canada which are lower than those cited. Then, what bugs me the most is that they look at the statistical median to question the effectiveness of drugs. As you know, I decided not to worry about statistics, especially the median, because when we speak of human life and death, the average is worth shit. I can not imagine they would refuse a potentially life-saving treatment based on the fact that the average survival is not long enough. If that person was one that was above the median. Worse, in statistics they take out outliers. So somebody could survive 15 years and it would not influence the average because it is not part of the calculation. In any case, I am very happy that, thanks to Barry, the Quebec government reimburses Avastin (bevacizumab), I could not have fought advanced cancer successfully without it. I have 14 months of survival that is already more than the median that of clinical studies show, and I know I'm going to extend this figure by far (like 35 years). Imagine if Mr. Picard refused to treat me with Avastin, he would have made a great mistake.
I initially said it was unhealthy as a discussion point because if we consider the cost in all our actions we would not have finished analyzing all kinds of expenses. Should we try to rehabilitate hardened criminals or simply reinstate the death penalty? Prisons cost a lot of money don't they? Should we keep a coast guard to go rescue people at sea at astronomical costs (helicopters are expensive). Why do ministers travel in limousine instead of a Honda Fit? It's a dumb question, right? That's what I think of his' as well.
Here is the article and Barry's response:
Original Article is copied below.
Dear Sirs,
As a colorectal cancer survivor and as president of the Colorectal Cancer Association of Canada, I read with great interest André Picard’s article of September 10, 2009, “We do have to put a price on Life”. I was in fact quite dismayed by the position of the author and by the absence of many important facts weighing heavily in favour of the new targeted therapies mentioned in the article.
First and foremost is the fact that many patients taking these medications have had the opportunity to extend their lives for periods much greater than as represented in the article. In fact, in combination with other chemotherapy drugs traditionally used in the treatment of colorectal cancer, patients have been able to extend their lives by almost two years. One might recall that in 1996 the mean survival was approximately one year.
Second, patients whose disease did not originally permit the surgical removal of their cancer may further benefit from these therapies. In some cases, patients are able to prolong their lives or even obtain a cure by having surgery to remove their cancer after having received treatments that include these new therapies.
In provinces that have not as yet covered the cost of some of these new drugs, patients are obliged to personally cover the costs or forgo treatment recommended by their physicians. In some cases, patients are even forced to leave the country to obtain access to the standard of care they should receive in Canada in accordance with treatment guidelines.
While the costs of these new cancer therapies are significant, they are in line with the costs of other medications for other diseases such as heart disease, and to my understanding they are not as high as quoted in the article.
These new targeted therapies are pointing the way to the future of cancer treatment. It is true no home run has as yet been hit, however steady progress is being made and we must ensure that Canadians have equal and timely access to the standard of care in the treatment of their disease. These are not drugs of desperation and they do provide a real and significant increase in survival and in the quality of life to cancer patients.
Barry D. Stein
President Colorectal Cancer Association of Canada
Andre Picard
Last updated on Thursday, Sep. 10, 2009 09:06AM EDT
How much is a life worth? What price can we put on extending a life for a few years, a few months or a few days?
Increasingly, those are questions that, however unsettling, need to be asked, particularly in the cancer field.
There are a growing number of cancer therapies. They are increasingly expensive.
And many produce only a short extension of survival. That combination can pose some serious dilemmas, clinical as well as ethical.
The issue is underscored by a recent article in the Journal of the National Cancer Institute.
Tito Fojo, a medical oncologist at the U.S. Center for Cancer Research at the National Cancer Institute, and Christine Grady of the department of bioethics at the U.S. National Institutes of Health.
The pair published some hard data on the costs and benefits of several high-profile cancer drugs that help provide some important perspective for this discussion.
Here are some examples to ponder:
Cetuximab (brand name Erbitux) is a drug used to treat lung and colorectal cancer. Treatment costs $80,352 (U.S.) and increases survival by 1.2 months.
Bevacizumab (Avastin) is used to treat lung, colorectal and breast cancer. A course of treatment costs $90,816 and it extends survival by 1.5 months.
Erlotinib (Tarceva) is used to treat lung and pancreatic cancer. Treatment costs $15,572 and the drug extends survival by 10 days.
Sorafenib (Nexavar) is used to treat kidney cancer and advanced skin cancer. A course of treatment costs $34,373 and it extends survival by 2.7 months.
These figures are, in themselves, thought provoking. But they tell only part of the story.
Every one of the cancer drugs cited is essentially a drug of desperation. They are used only after many other surgical interventions and drug treatments have failed.
As with all drugs, there are also side effects, in many cases debilitating ones. This reminds us that survival needs to be measured in more than days kept alive.
Let's take a more in-depth look at one of the drugs, cetuximab. It was a highly anticipated drug because it tackled cancer in a new way.
In May of this year, the medical journal The Lancet published the results of a study about the use of cetuximab to treat non-small-cell lung cancer.
The researchers concluded that adding the drug to the standard platinum-based chemotherapy drugs cisplatin and vinorelbine "sets a new standard" for the treatment of patients.
One month later, at the conference of the American Society of Clinical Oncology, which is considered the world's most important cancer meeting, it was stated that the findings "are likely to have a significant impact on the care of patients."
Neither the published paper nor the press briefing touting the wonders of the drug underscored that many patients treated with cetuximab suffered severe febrile neutropenia (a combination of fever and low white blood cell count that puts patients at risk of infection), along with diarrhea and rashes.
Nor do those singing the praises of the drug much like to talk about its cost. The $80,000 cost for an 18-week treatment is also misleading. That is the cost of the drug, and does not include the time of health professionals to perform the infusion and related tests nor the cost of treating side effects.
In their paper, Dr. Fojo and Dr. Grady offered this dispassionate analysis of the data: "The only reasonable conclusion is that a magic anti-cancer bullet aimed at an important target missed by a wide margin."
They describe cetuximab, bluntly but fairly, as a "treatment offering marginal benefit at very high cost."
Survival rates for most cancers have risen steadily for a number of years. But cancer is still a big killer.
Last year, an estimated 166,400 Canadians were diagnosed with cancer and about 73,800 died.
In cancer treatment, everyone hopes against hope but, at some point, the disease often gets the upper hand.
As treatments become more desperate, we need to ask ourselves some tough questions, many of which Dr. Fojo and Dr. Grady set out in their paper: What should count as a benefit in cancer treatment? What is the minimum amount of benefit required to adopt a new drug therapy? In the case of cetuximab, is 1.2 months of additional life a "good" in itself? Or does the quality of life during that time matter? And does cost matter?
There are those who will protest that cost should not be an issue when treating someone with a grave illness such as cancer. But, however callous it may seem, cost must be an issue and a cost-benefit analysis must be done.
In our health-care system, money is not unlimited. The $80,000 spent on cetuximab to potentially extend a person's life by a few weeks could be used in other ways and, undoubtedly, to more effect.
For example, is money best spent on a desperation drug with limited effect or on palliative care for dying cancer patients?
The all-too-common practice of administering new, marginally beneficial drugs to dying cancer patients is a losing proposition, for the patient, the health system and society at large.
Yes, every life is precious, some would say of infinite value.
But we have to stop deluding ourselves. People will die of cancer. Every reasonable effort should be made to ensure a good life and a good death.
But that does not mean mindlessly throwing huge sums of money at so-called miracle drugs.
Quality of life matters - for everyone.
Correspondance between Marie-Josée and André Picard (translated by myself since it was originally in french)
From André Picard
That is precisely the challenge: How to target treatments to maximise benefits to the individual and society.
It's another huge challenge created by cancer which as you said is already cruel and ungrateful.
-----Original Message-----
From: Marie-Josée Lafrance
Sent: 10 septembre 2009 23:59
To: Picard, Andre
Subject: Re: article cancer
Thank you! The question remains how do we know in advance if the patient will ahve marginal benefits or like my husband a very favorable response to therapy. Food for thought.
Picard, Andre wrote:
> Thank you for your comments but I beg to differ, the public needs to have those discussions and debate.
> It is remarkable that your husband benefited from Avastin (and other interventions) and that he is in remission. But a lot of patients do not benefit as much from these costly treatments. In those cases money would be better spent in palliative care.
> That is reality. We must be realistic, and not create false hope.
> Santé!
> André
> -----Original Message-----
> From: Marie-Josée Lafrance
> Sent: 10 septembre 2009 23:18
> To: Picard, Andre
> Subject: article cancer
> M. Picard
> I read your article on the astronomica costs of medications and became nauseous.
> My husband was diagnosed with colon cancer (inoperable) in July 2008. A 30 cm (12 in) tumour was reaching far up touching his liver stomach and kidneys in addition to his peritoneal wall. His life expectancy was a few months only
> Well, thanks to Avastin combined with other chemotherapy treatments, he is still alive 14 months after diagnosis and he bacame eligible for surgery in June 2009. He went through surgery combined with a state of the art technic called HIPEC, which is hot chemo directly into his abdomen. Cancer is 98% gone and he is in remission and doing pretty well today. He was able to see our daughter start in grade 1 in September.
> How can clinical studies show differences inlongevity with or without medication when age, cancer spread, type of cancer, personal predisposition, medical history are all factor that influence outcome
> My husband is 42 and still alive to see his children grow thanks to Avastin. Without this medication he would not be here anymore. Life does not have a price. ¨
>It is apparent to me, sir, that severe illness never touched you.
> Cancer is already cruel and ungrateful enough as it is. The public does not need articles like yours to take away their hope.
> Santé!!
> The Spouse of a cancer survivor
I got feedback on my last blog. The consensus is that I should write more regularly, even if only to say that all is well. So I told myself that I would try to have some regularity, say once a week.
Yesterday, Barry Stein sent me an article published in the Globe and Mail, written by Andre Picard, which was attached to his reply as president of the Colorectal Cancer Association of Canada. My wife was furious after reading the article and has also written to the journalist. The latter replied almost immediately (it was midnight). For my part, the article kinda upset me a little. As my wife mentioned in her email to the journalist, to be able to write this kind of thing you can't possibly have lived the horrors of cancer, near or far.
The article is titled: We do have to put a price on life. You can read it by clicking the title or just keep reading because I reproduce the article and the response from Barry and Marie-Josée's e-mail.
Before let me give you my opinion which I have not sent to Mr. Picard. Every citizen is entitled to his opinion and as a journalist he has the right to try to raise a debate on a matter of public interest because our health system is financed by the government (so all of us). However I find unhealthy to oversimplify complex ethical questions. The basis of his text is an article published in the United States by two oncologists who supposedly analyzed the cost-benefit of the use of certain new drugs against cancer. Mr. Picard does not seem to have made a critical reading of the text in question because he has not made the effort to check prices in Canada which are lower than those cited. Then, what bugs me the most is that they look at the statistical median to question the effectiveness of drugs. As you know, I decided not to worry about statistics, especially the median, because when we speak of human life and death, the average is worth shit. I can not imagine they would refuse a potentially life-saving treatment based on the fact that the average survival is not long enough. If that person was one that was above the median. Worse, in statistics they take out outliers. So somebody could survive 15 years and it would not influence the average because it is not part of the calculation. In any case, I am very happy that, thanks to Barry, the Quebec government reimburses Avastin (bevacizumab), I could not have fought advanced cancer successfully without it. I have 14 months of survival that is already more than the median that of clinical studies show, and I know I'm going to extend this figure by far (like 35 years). Imagine if Mr. Picard refused to treat me with Avastin, he would have made a great mistake.
I initially said it was unhealthy as a discussion point because if we consider the cost in all our actions we would not have finished analyzing all kinds of expenses. Should we try to rehabilitate hardened criminals or simply reinstate the death penalty? Prisons cost a lot of money don't they? Should we keep a coast guard to go rescue people at sea at astronomical costs (helicopters are expensive). Why do ministers travel in limousine instead of a Honda Fit? It's a dumb question, right? That's what I think of his' as well.
Here is the article and Barry's response:
Original Article is copied below.
Dear Sirs,
As a colorectal cancer survivor and as president of the Colorectal Cancer Association of Canada, I read with great interest André Picard’s article of September 10, 2009, “We do have to put a price on Life”. I was in fact quite dismayed by the position of the author and by the absence of many important facts weighing heavily in favour of the new targeted therapies mentioned in the article.
First and foremost is the fact that many patients taking these medications have had the opportunity to extend their lives for periods much greater than as represented in the article. In fact, in combination with other chemotherapy drugs traditionally used in the treatment of colorectal cancer, patients have been able to extend their lives by almost two years. One might recall that in 1996 the mean survival was approximately one year.
Second, patients whose disease did not originally permit the surgical removal of their cancer may further benefit from these therapies. In some cases, patients are able to prolong their lives or even obtain a cure by having surgery to remove their cancer after having received treatments that include these new therapies.
In provinces that have not as yet covered the cost of some of these new drugs, patients are obliged to personally cover the costs or forgo treatment recommended by their physicians. In some cases, patients are even forced to leave the country to obtain access to the standard of care they should receive in Canada in accordance with treatment guidelines.
While the costs of these new cancer therapies are significant, they are in line with the costs of other medications for other diseases such as heart disease, and to my understanding they are not as high as quoted in the article.
These new targeted therapies are pointing the way to the future of cancer treatment. It is true no home run has as yet been hit, however steady progress is being made and we must ensure that Canadians have equal and timely access to the standard of care in the treatment of their disease. These are not drugs of desperation and they do provide a real and significant increase in survival and in the quality of life to cancer patients.
Barry D. Stein
President Colorectal Cancer Association of Canada
Andre Picard
Last updated on Thursday, Sep. 10, 2009 09:06AM EDT
How much is a life worth? What price can we put on extending a life for a few years, a few months or a few days?
Increasingly, those are questions that, however unsettling, need to be asked, particularly in the cancer field.
There are a growing number of cancer therapies. They are increasingly expensive.
And many produce only a short extension of survival. That combination can pose some serious dilemmas, clinical as well as ethical.
The issue is underscored by a recent article in the Journal of the National Cancer Institute.
Tito Fojo, a medical oncologist at the U.S. Center for Cancer Research at the National Cancer Institute, and Christine Grady of the department of bioethics at the U.S. National Institutes of Health.
The pair published some hard data on the costs and benefits of several high-profile cancer drugs that help provide some important perspective for this discussion.
Here are some examples to ponder:
Cetuximab (brand name Erbitux) is a drug used to treat lung and colorectal cancer. Treatment costs $80,352 (U.S.) and increases survival by 1.2 months.
Bevacizumab (Avastin) is used to treat lung, colorectal and breast cancer. A course of treatment costs $90,816 and it extends survival by 1.5 months.
Erlotinib (Tarceva) is used to treat lung and pancreatic cancer. Treatment costs $15,572 and the drug extends survival by 10 days.
Sorafenib (Nexavar) is used to treat kidney cancer and advanced skin cancer. A course of treatment costs $34,373 and it extends survival by 2.7 months.
These figures are, in themselves, thought provoking. But they tell only part of the story.
Every one of the cancer drugs cited is essentially a drug of desperation. They are used only after many other surgical interventions and drug treatments have failed.
As with all drugs, there are also side effects, in many cases debilitating ones. This reminds us that survival needs to be measured in more than days kept alive.
Let's take a more in-depth look at one of the drugs, cetuximab. It was a highly anticipated drug because it tackled cancer in a new way.
In May of this year, the medical journal The Lancet published the results of a study about the use of cetuximab to treat non-small-cell lung cancer.
The researchers concluded that adding the drug to the standard platinum-based chemotherapy drugs cisplatin and vinorelbine "sets a new standard" for the treatment of patients.
One month later, at the conference of the American Society of Clinical Oncology, which is considered the world's most important cancer meeting, it was stated that the findings "are likely to have a significant impact on the care of patients."
Neither the published paper nor the press briefing touting the wonders of the drug underscored that many patients treated with cetuximab suffered severe febrile neutropenia (a combination of fever and low white blood cell count that puts patients at risk of infection), along with diarrhea and rashes.
Nor do those singing the praises of the drug much like to talk about its cost. The $80,000 cost for an 18-week treatment is also misleading. That is the cost of the drug, and does not include the time of health professionals to perform the infusion and related tests nor the cost of treating side effects.
In their paper, Dr. Fojo and Dr. Grady offered this dispassionate analysis of the data: "The only reasonable conclusion is that a magic anti-cancer bullet aimed at an important target missed by a wide margin."
They describe cetuximab, bluntly but fairly, as a "treatment offering marginal benefit at very high cost."
Survival rates for most cancers have risen steadily for a number of years. But cancer is still a big killer.
Last year, an estimated 166,400 Canadians were diagnosed with cancer and about 73,800 died.
In cancer treatment, everyone hopes against hope but, at some point, the disease often gets the upper hand.
As treatments become more desperate, we need to ask ourselves some tough questions, many of which Dr. Fojo and Dr. Grady set out in their paper: What should count as a benefit in cancer treatment? What is the minimum amount of benefit required to adopt a new drug therapy? In the case of cetuximab, is 1.2 months of additional life a "good" in itself? Or does the quality of life during that time matter? And does cost matter?
There are those who will protest that cost should not be an issue when treating someone with a grave illness such as cancer. But, however callous it may seem, cost must be an issue and a cost-benefit analysis must be done.
In our health-care system, money is not unlimited. The $80,000 spent on cetuximab to potentially extend a person's life by a few weeks could be used in other ways and, undoubtedly, to more effect.
For example, is money best spent on a desperation drug with limited effect or on palliative care for dying cancer patients?
The all-too-common practice of administering new, marginally beneficial drugs to dying cancer patients is a losing proposition, for the patient, the health system and society at large.
Yes, every life is precious, some would say of infinite value.
But we have to stop deluding ourselves. People will die of cancer. Every reasonable effort should be made to ensure a good life and a good death.
But that does not mean mindlessly throwing huge sums of money at so-called miracle drugs.
Quality of life matters - for everyone.
Correspondance between Marie-Josée and André Picard (translated by myself since it was originally in french)
From André Picard
That is precisely the challenge: How to target treatments to maximise benefits to the individual and society.
It's another huge challenge created by cancer which as you said is already cruel and ungrateful.
-----Original Message-----
From: Marie-Josée Lafrance
Sent: 10 septembre 2009 23:59
To: Picard, Andre
Subject: Re: article cancer
Thank you! The question remains how do we know in advance if the patient will ahve marginal benefits or like my husband a very favorable response to therapy. Food for thought.
Picard, Andre wrote:
> Thank you for your comments but I beg to differ, the public needs to have those discussions and debate.
> It is remarkable that your husband benefited from Avastin (and other interventions) and that he is in remission. But a lot of patients do not benefit as much from these costly treatments. In those cases money would be better spent in palliative care.
> That is reality. We must be realistic, and not create false hope.
> Santé!
> André
> -----Original Message-----
> From: Marie-Josée Lafrance
> Sent: 10 septembre 2009 23:18
> To: Picard, Andre
> Subject: article cancer
> M. Picard
> I read your article on the astronomica costs of medications and became nauseous.
> My husband was diagnosed with colon cancer (inoperable) in July 2008. A 30 cm (12 in) tumour was reaching far up touching his liver stomach and kidneys in addition to his peritoneal wall. His life expectancy was a few months only
> Well, thanks to Avastin combined with other chemotherapy treatments, he is still alive 14 months after diagnosis and he bacame eligible for surgery in June 2009. He went through surgery combined with a state of the art technic called HIPEC, which is hot chemo directly into his abdomen. Cancer is 98% gone and he is in remission and doing pretty well today. He was able to see our daughter start in grade 1 in September.
> How can clinical studies show differences inlongevity with or without medication when age, cancer spread, type of cancer, personal predisposition, medical history are all factor that influence outcome
> My husband is 42 and still alive to see his children grow thanks to Avastin. Without this medication he would not be here anymore. Life does not have a price. ¨
>It is apparent to me, sir, that severe illness never touched you.
> Cancer is already cruel and ungrateful enough as it is. The public does not need articles like yours to take away their hope.
> Santé!!
> The Spouse of a cancer survivor
Sunday, September 6, 2009
3 months
September 3 marked the third month of convalescence. When I am not affected by the chemo (between day 7 and 13) I'm pretty good. I think I could be better but still not bad. I can not complain. In fact, there is one thing I complain about, my bowel function is really not optimal yet. I am told that it could take up to one year but deep down inside I hope that it will be quicker. I manage the situation still better than the first two months of convalescence.
My appointment with Dr. Y was delayed to September 29 . This will be almost 4 months since I last saw him. I look forward to hear what he has to say.
MJ commented that I was not writing as often on the blog ... Maybe a little. I really do not know what might interest you. In the last year I told you everything and now I am a little afraid of boring you. If you have specific questions to ask me, go ahead it will feed the blog.
Apart from that we continue to pray and make the every effort to keep cancer at bay.
Santé!
My appointment with Dr. Y was delayed to September 29 . This will be almost 4 months since I last saw him. I look forward to hear what he has to say.
MJ commented that I was not writing as often on the blog ... Maybe a little. I really do not know what might interest you. In the last year I told you everything and now I am a little afraid of boring you. If you have specific questions to ask me, go ahead it will feed the blog.
Apart from that we continue to pray and make the every effort to keep cancer at bay.
Santé!
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