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

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!

Things are good

Just a quick note to say that I am beginning to see light at the end of the tunnel. Even if the situation (south of the navel) is not quite perfect, it is improving slowly. Chemo interferes a little in the restoration of optimal intestinal function but I know it's temporary. Speaking of chemo, I received my third treatment post-surgery. I will be disconnected in about an hour.
Dr. L had to hear me cry a little. I confessed that I sometimes fear the return of the cancer. He listened with empathy and comforted me on the fact that fear is normal and it was healthy to express it. Yes, there are those days where I am really scared. On these days I am even afraid to say that the cancer is gone in case it would hear and decides to return. This is silly.
That's the ups and downs of living with cancer. Even if I want to be strong there are days when it's harder. Don't worry though these moments never lasts long.
Dr. L told me when we talked about the surgery and my recovery and chemo treatments: you are strong. This is the first time he told me that. I was flattered. I know many of you tell me the same thing but for me it's like a pat on the back at work, you always want more.
I'm going to see Dr. Y in September. I look forward to that appointment. I look forward to when I can start doing real exercises. I look forward to his "thumbs up".

We went camping in August. A few days in a tent and the following week in an RV (Class C). The tent was hard. It was the week following chemo and it rained a lot. Two conditions that do not help enjoy the experience. The week in RV has been fantastic. A whole new camping experience. If you want to see the pictures you can click here http://www.facebook.com/album.php?aid=2027702&id=1057565304&l=3ad6134168 . This is MJ's facebook album for summer 2009 (158 photos).

Finally, I leave you by saying that Tristan started school. It is his second day today. Yesterday the bus dropped him home at 17:50. They had left school at 16:45. It seems that the traffic was terrible. We hoped that there will be adjustments to the route. Jordan and Elodie start Monday. Both are very excited.

Good day to all!

Who Am I?

Odd question, eh!

Let me explain my point. Since July 2008, I defined myself as as a man with stage 4 colon cancer stage 4. Even once in a conversation with the social worker, I made a freudian slip, I said I am a colon cancer. She replied by saying you have cancer, you are not a cancer. Of course that's what I meant but the slip made me think for a moment on how I perceived my illness.
So, I said that I saw myself for a year as a man with a diagnosis of colon cancer. Except that since June 3, there is no visible trace of cancer and my markers are in the normal range. Do I still define myself the same way. Instead, I want to see the positive side. I could define myself as a survivor. The survival period is not very long but still.
I talked to my mentor (Barry). He suggested that i say that I am NED, which he uses for himself. NED means No Evidence of Disease and in his case it's been about 7 years. Talking to Barry is always comforting, I think it's appropriate to say that I have been NED for 2 months. It's similar to Alcoholics Anonymous, they count the number of days of sobriety. Also there is something in the act of saying "no evidence of disease" which puts a smile on my face.
Some of you will say it's simple you're Martin Raymond. But you see this is not the same Martin as before the disease. Cancer changes you and like it or not it is part of me now (without evidence or present). So to define myself simply as Martin seems incomplete, not very precise. This is not a question of wanting to feel sorry or attract pity, I think it's just who I really am a cancer survivor NED since 2 months. Have you ever asked the question, Who are you? ... What is the answer? You are welcome to share your thoughts with me via email (more private) or via comments on the blog.

Santé!

Follow-up appointment in surgery

Met Dr. S. today to follow up on the surgery. The surgeon found I was top shape considering the time elapsed. Her comment was "you had to be a great athlete before the operation to recover at this speed." ;-)
Great athlete I don't know but she was nice. She said that normally after 6 weeks they expect to see patients who walk slowly, sit up slowly, speaks slowly. She felt I stood very straight (posture) with a near normal walk and a normal speaking rate. To all my questions on weight loss, the amount of faeces per day etc.. she replied "normal".
According to her, there will be another month like this and then it should start to return to normal. I told her that I did not think I was in good shape. When I mentioned my walks at 3Km / h, she said that's fast. When I told her that I played golf on the WII (Woods 2010) and that I regretted it cause I spend the afternoon aching. She forbided me to play for another month. No muscular effort before another month (walking is good). Such an appointment helps to put things in perspective. It serves as a milestone. She boosted my morale for sure.

Santé!

We'll get there!

Lately I think I just forget who I am and my core principles. In the last month I was waiting for my energy to come back to feel good. It's as if I told myself when I have the energy I will make plans, smile, get involved.
This morning I listened to a recording of Dr. Simonton provided by my wife's doctor. This recording reminded me that the healing process is opposite to the one I was living recently. That is to say that this is not the body that dictates the level of energy of your spirit, but the opposite. I temporarily forgot that what my thoughts defined how I feel. I had an awakening, a kind of "Ha Ha" moment. This is not instantaneous but I did set a new foundation for my healing, some new thoughts.
I have no excuses for this but I realize now that I dreaded my first appointment post surgery with my hematologist Dr. L. I realized that I had mixed emotions. I was happy to see him because he always gives me confidence but I did not want to disappoint him by admitting that I was not ready for a round of chemo. At the same time I was afraid he would tell me it had to be done now. But Dr. L is a great doctor. I did not feel any pressure. I felt great compassion and from the beginning I felt that we were a team.
He told me the level of my markers: 3. He said it was excellent the lowest level since the beginning. He was happy with the situation except that I lose a lot of weight. He suggested I meet with the nutritionist to establish a plan. I have an appointment next Monday. I will see DR L. in two weeks to reassess the possibility of starting chemotherapy.

A former classmate of MJ has a brother who was diagnosed with brain cancer. He is followed by the same hematologist than me (coincidence?). This classmate told him about me because she follows my situation through facebook and my blog. Her brother said that my story inspired him and gave him hope. As he is hospitalized, MJ and I went to visit him yesterday. Even though I was not a portrait of energy, I wanted to tell him in person not to quit and keep the faith.
Today he is going for brain surgery. I prayed for him all night without being able to stop it's as if we had a cosmic connection. My mind was constantly thinking about him and praying. At the point where I did not get to sleep. I made up for it this morning sleeping from 10am to noon. I tell you this story because yesterday's visit put things in perspective for me.

Thank you again for all your support on facebook on the blog or in my email.

Santé!

Patience is a virtue

I thought I was a patient guy, I am not so sure these days. The days are redundant, the same TV shows, the toilet routine, the medication. Always looking for a position: sitting on the sofa, lying on the bed, sitting on the bed with my legs crossed, yoga position (the child) with cushions under the belly. When my mind feels combative I get on the treadmill, 10 minutes @ 3 km / h, then I lie down on the bed again.
Although I eat my three meals a day, the quantities are small so I am now at 153 lbs. The lowest weight since my teen years. The good thing about it is that I can rebuild my body and I am sure that I will never return to what I looked like before cancer. It's been a month of convalescence, I was told it would take about three. I believe another month I'll be back to my normal energy level. Time will tell me.

See Ya!