About one month ago, he traveled there from Canada, his residence during 20 years, and was under the wonderful, loving care of his sisters and his brother in law. He spent this last month eating well, talking, remembering with her sister; he had old friends visiting... to quote him, from some weeks ago: “eating like a horse and being pampered by my sister”. : )
We emailed until 10 days ago. His mind was brilliant and sharp as always, his heart in the right place, as always. He went peacefully, in no pain; died naturally, just a few hours after getting to see his son one more time (he arrived from Canada). On his own terms, with integrity and honesty, as he lived. Like the gentleman and the brave man he was.
In August, he was able to take his dear son for his first driving lesson, and he got his provisional license after that. Marc was happy and very proud. He was also proud of his daughter, who just started the university. : )
I’m sure his sister will come to the board and post, eventually. Months ago, I asked Marc for permission to update about him here, when he felt his condition was deteriorating; being the generous soul he was, he said “So much bad news, I don't want to add to it. Leave it for now”. I feel it would be good for his sisters, and maybe for Marc’s children, in the future, if we can say some words about our friend in this thread.
For those who didn’t know him, because he was more active in the board in previous years but not lately: when he got diagnosed with lung mets and two retroperitoneal tumours in June 2012 (he was NED three months before that), Marc, who was a physician, refused chemo and opted for his own path with an 'old' and 'experimental' (effective) immunotherapy –Coley’s fluid/toxin or vaccine. You can read the reasons of his election in this entry in his blog:
Who’d Be A Mouse?
September 17, 2012
It is not an easy thing to refuse the offer of an another six or twelve months of life. When faced with imminent or fairly imminent death life becomes, well, very precious indeed. There is an advantage. Not everyone is granted the opportunity to know, more or less, in advance that death is near. It allows us time, precious, priceless time. Time to spend with family and children. Time to squeeze into those few months all the love of a life time. Time to pass on our wisdom and lessons learned. Time to make amends, to tie up the ends of a disordered, neglectful life. Time that we imagine will be intense and profound. Time that must somehow, surely, make up for the years lost. Time to say goodbye.
But it does not seem that way. Life, my life, other people’s lives, it all goes on. The day to day routines continue their grip. I still need to work, to have some kind of income. I need to buy groceries, cook my meals, prepare for the long winter that is around the corner, although I don’t know if I will be there to see the end of it. My children still go to school, they have their activities and their time with friends. So really, life when you are dying is not all that different than when you are not. But every day, as the clock winds down, I am aware of my circumstances. It does not leave me. There will come a day, not so very long from now, which will be my last. I draw comfort from the fact that after that day nothing will matter anymore, not to me at any rate. And, strangely and unexpectedly, I am getting used to this. We humans are adaptable, we can survive in concentration camps, we can survive, even be content at times, on death row. And it is these daily tasks, the routine, the bloody ordinariness of it all that helps us through. I am not quite sure what to make of it all. I do not know how life goes on, not changing, while I am looking at the clock.
Nor am I quite sure why I am so adamant in refusing further life extending chemotherapy. My attitude is not fully rational. I could argue, and do, that the chemo will make me sick, and I do not wish to spend the time that remains feeling miserable. Quality, not quantity of life as they say. But that is not quite true. I am going to get sick anyway, and I suspect, given my past experience, that I would tolerate the chemo fairly well. Another reason is that I have not yet fully, totally accepted that I will die of this disease. If I choose chemo I know that I will have resigned myself to my death. There is no hope that it will cure me, if I start I know I will be on it till close to the end, I know that in many ways it will compromise my health and the chance, however small, of a possible cure by other means. That is a big part of my decision, but it is not, I think, entirely rational. Perhaps I am in denial, looking for straws to cling to. The drive to live, even under the most adverse circumstances, is strong and irrepressible. I am not yet prepared to contemplate that final intake of breath.
I also rebel, again irrationally, at the expectation that I will follow, sheeplike, the path that modern medicine has laid out for me, a path that will inevitably lead to misery and death. You might say that I have lost my faith in a system that I have served most of my life. I now see, clearer than ever before, its deficiencies, its impotence, its arrogance and its ultimate indifference to my fate.
There is another reason too, also irrational perhaps. I feeI betrayed, I am angry. Angry at the way the cancer industry is run. Angry that after all these years they have not done better. Angry that we have been lied to, and continue to be lied to. I want no part of it anymore.
I will digress at this point. The cancer industry is huge. After all, few of us will remain untouched by this disease in one way or another. Every reasonably sized hospital has a cancer centre. These are staffed by oncologists, radiotherapists and surgeons. Staffed by nurses, pharmacists, social workers, dieticians, counsellors, administrative personnel, the list goes on. There are academic centres, research institutes, prestigious hospitals. There are professors, scientists, there are reputations to be made, accolades to be earned, research funds to be competed for. There is the pharmaceutical industry, making huge profits. And all this is world wide. All these institutions, all these individuals have a stake in this industry, to maintain it. And if you look carefully, at the bottom of it all there are the cancer patients. Some of them will live, many will die. But that is not the point of this industry. The point is the cancer industry itself.
Let us look at what has been achieved by this industry. Modern cancer treatment can be said to have started in the 1950’s, with the advent of chemotherapy, more sophisticated radiotherapy and improved surgical techniques. Mustard gas was developed by Germany in the first world war, and used in chemical warfare. It is from these inauspicious beginnings that chemotherapy evolved, after it was discovered that nitrogen mustard suppressed bone marrow activity. It was in the 1950’s that chemotherapy began to be used in the treatment of leukaemia and Hodgkin’s lymphoma. And with success – the prognosis for childhood leukaemia improved dramatically. This led to a sense of extraordinary optimism. We could make drugs that kill cancer cells. In the 1970’s Nixon declared “the war on cancer” (he also made war on Cambodia). Since then most of the research in cancer has focused on finding drugs, molecules, that will kill cancer. There have been successes. Leukemias and other cancers of the blood respond well to chemotherapy. Testicular cancer can be cured almost 100% with chemotherapy. But the results for other, solid cancers have been disappointing.
Let us look at where we stand now. After fifty odd years of research and billions of dollars there has been little improvement in cancer survival. The statistical improvement in survival is almost entirely due to prevention, screening and early diagnosis. Advanced cancer, recurrent metastatic cancer has a similar prognosis as it did fifty years ago, no better than ten percent survival. Chemotherapy can prolong life in these circumstances but it will not cure your cancer. And look at the chemotherapy that is being used. The first line chemotherapy for breast cancer consists of adriamycine and cyclophosphamide, 45 and 60 year old drugs. The first line treatment for colorectal cancer is 5-fluouracil (50 years old) and oxiplatin (30 years old). This may seem surprising. After all, barely a week goes by without some much trumpeted new advance in cancer treatment. Monoclonal antibodies that specifically target cancer cells. Nano particles, viruses, vaccines, analyzing a cancer’s genetic structure so that treatment can be tailored, it all sounds wonderful and exciting and leaves us with the illusion that major progress is being made, that a breakthrough is just around the corner. But very little has made its way into actual treatment. The greatest achievement seems to be that we can cure cancer in genetically engineered mice. And who’d be a mouse?
Let me give two examples. Avastin was developed by Genentech, a company that was started by a venture capitalist. Avastin was granted FDA approval in 2004 based on a 2003 study involving 829 patients with advanced colorectal cancer. It compared survival between patients receiving the standard Folfox regimen and those receiving Folfox with Avastin. The mean improvement in survival in the Avastin group was 2.1 months. Based on these results FDA approval was rushed through (with the help of Roche, which soon afterwards acquired Genetech). Avastin is now the second highest grossing pharmaceutical world wide. In Canada Avastin costs $40,000 a year. Side effects are severe, including hypertension, haemorrhage, impaired wound healing and bowel perforation.
Herceptin (also made by Genentech) was hailed as a major breakthrough in the treatment of advanced breast cancer. In a 2007 study it improved overall survival by 4.8 months, at a cost of $100,000 per year. Genentech made $1.3 billion from this in the US alone in 2007.
The pharmaceutical industry justifies their huge profits by claiming it is necessary to fund research and development. In fact, and they would rather you did not know this, they spend twice as much on marketing and administration as they do on research and development. Academic centres used to initiate research. That is no longer the general case. A drug company will develop a promising molecule and they pay for the trials (and who pays the piper gets to call the tune). The academic centres provide the human subjects, the drug company will own the data and write up the paper, a consulting academic (“opinion maker”) will have his name attached to it, and the FDA approves the whole enterprise. Bingo! These same professors and opinion makers are the ones who sit on the advisory committees of the FDA and have lucrative ties to the drug companies. In this incestuous world everyone eats from the same table. What could possibly be wrong with this?
I do not argue that there is a deliberate attempt to “block the cure for cancer”. I do not believe there was ever a time a group of pharmacrats, bureaucrats and academics gathered in a smoke filled back room to block the cure. But I do believe there is an element of corruption in all of this. I believe cancer is being mined for profit. And I do not necessarily believe that a research scientist, earning $40,000 a year, or an oncologist (earning rather more) are partner to this cynical enterprise. But I do think there is an extraordinary degree of tunnel vision. For many generations the focus has been on chemotherapy drugs. Generations of professors, academics and scientists have ploughed this barren furrow. That is where the money is, that is where reputations are made, that is where the funding goes. And money, ultimately is what it is all about.
I will have no part of this. I am not a statistic, not a pawn in someone else’s profit scheme, not a piece of grist in this mill. I will deal with my disease on my own terms. I am not a mouse.
Our Marc was a writer… a poet, I would dare to say. Each entry of his blog is a masterpiece:
Alter Ego; Life and Death; all of them.
His favourite song was “Quiet”, of Paul Simon. We hear it together these past days; I invite you to play it, in his honour: http://grooveshark.com/#!/s/Quiet/38SNHk?src=5
He wrote:
I took solace in the words of Paul Simon, a poet and artist who has written a song for everything that has happened in my life. It is called:
“Quiet”
“I am headed for a place of quiet
where my restlessness is past
where I can lie down on my blanket
and release my fists at last
I am headed for a time of solitude
of peace without illusions
where the perfect circle marries
all beginnings and conclusions
And when they say that you’re not good enough
well the answer is you’re not
but who are they and what is it
that eats at what you’ve got
With the hunger and ambition
for the change inside your purse
they are handcuffs on the soul my friend
handcuffs on the soul
and worse
I am headed for a place of quiet
where the sage and sweet grass grow
by a lake of sacred waters
from the mountain’s melted snow”
I've loved him, I love him. Godspeed, Marc, my beloved immunotherapy buddy, admired friend, brother. I miss you terribly.
