A little more than 13 months ago, my wonderful wife Elaine was diagnosed with stage 3c primary peritoneal (ovarian) cancer. So the last year has been filled with the ravages of chemo-therapy and all the miseries that attend it.
A devastating diagnosis like this forces you to reassess everything. What we found was that attitude and perspective really do matter, and are the bedrock of happiness, in good times or bad.
During the process, I recorded our experiences moment to moment, sent them around to friends and colleagues, and posted them on a blog. Since its the weekend, I thought I’d post the latest one, which went out this week, for C&C.
One missing piece in the column below. In my activities focused on the RUC, I was introduced to John Goodson, MD, who has written extensively about the RUC’s negative impact on care and cost. After a discussion with Dr. Goodson, he perused some information about me and discovered Elaine’s condition. He called and urged me to talk with Jeffrey Gelfand, MD, a prominent immunologist, also at Harvard, whose wife had succumbed to the same disease that Elaine has. I did, and it was a sobering but profoundly important opportunity. Though he is no longer involved financially, Dr. Gelfand was one of the founders, with Jennifer Levin-Carter, of N-of-One, described below.
It’s odd, but this is the way things happen, and I am profoundly grateful that they do.
A little more than a month ago, Elaine was in the kitchen, cooking and I was sitting at the counter, writing. She suddenly whirled around and said, “It’s a year today. It’s April 26th. The big surgery was a year ago today.” It was worth noting. It had been a difficult year, but we are both still here and happy together.
We’re in the flow of cancer now. It is a regular routine, as though everything’s alright, but with the nagging awareness that you’re under the Sword of Damocles. After her first round of conventional chemotherapy, Elaine entered remission, which means that most of the signs and symptoms had disappeared. But in all likelihood the cancer remains, with fewer cells present. For now.
Most women with primary peritoneal cancer have a similar experience. Their cancer is knocked back for 12-36 months and then it recurs, strengthened and more ferocious than ever. The problem is that, after the wrenching experience of chemotherapy – the hair loss, the intestinal roller-coaster, the bruising – nobody much wants to press on, and there’s the sense that you’re in a lull and can relax just a little.
That’s an illusion. Cancer is a stealthy, sneaky, relentless adversary, and it’s at it day and night. Or as my friend Tom Barr noted the other day, “the Emperor NEVER takes a day off.” This means that the ONLY path is vigilance, and pursuing every possible rational lead, independent of whether we feel like it or not. We’re after long term benefits for short term sacrifices, however difficult those may be.
With cancer, patients’ realistic options have been extremely limited in the past. But there’s one in front of us now that appears to be promising, and the very leading edge, not just of cancer care, but of medicine. A colleague at Harvard learned about Elaine, and put us in touch with a small Boston personalized medicine start-up. N-of-One (great name!) doesn’t provide care directly, but is really a personalized cancer treatment ombudsman service. It is based on the understanding that cancer most often occurs from mistakes in the genetic code, and that individuals with the same kinds of cancer can have dramatically different error signatures.
Here’s an excerpt of the explanation under the heading “Discovering the Molecular Signature of Cancer” on the N-of-One site.
…most cancers are associated with mistakes in the genetic code. Such mutations have been found in more than 120 genes. These genes control the synthesis of proteins that carry out the biochemical reactions (referred to as molecular signaling pathways) that regulate cell division, growth, and death. Mutations to one or more of these genes may cause a cell to produce too much or too little of a key protein or produce a defective protein that does not respond appropriately to the molecular signals. Carcinogenesis is initiated when these mutations are sufficiently severe to disrupt the molecular pathways that control cell division and other related cellular properties, resulting in the formation of a tumor, invasion of surrounding tissues, and metastasis.
Each cancer has its own unique genetic and molecular signature. This explains why individuals with the same type and stage of cancer may experience dramatic differences in their responses to chemotherapy. Researchers now have the means to rapidly analyze the unique signature of a patient’s tumor based on the expression of the genes involved in its carcinogenesis. This capability has opened the door to more accurately predicting the outcome of a patient’s cancer and individualizing his or her treatment to match the molecular characteristics of the tumor.
Think for a moment what a breathtaking, sweeping advance this is! It is now possible to conduct assays on tissues to evaluate mechanisms at the level of the gene. Then we can try to match the particular configuration of problems with therapies that exist or, alternatively, build a new therapy that can target that individual’s issues. This approach, still very much in its infancy, of course, moves medicine to a much deeper, more individual level of biology than ever before, and has immense promise.
So, in this approach, the N-of-One team would coordinate assays at labs around the country, each of which provide high expertise in different tests. As the results come in, a genomic profile would be assembled that reflects the patient’s – in this case, Elaine’s – molecular characteristics.
Then a search would be conducted to match Elaine’s genomic signature to an available genomic therapy. At the moment, there are nearly a thousand of them, though most aren’t germane to Elaine’s condition. Still, it is probably safe to say that there are more than any busy practicing oncologist can keep track of on his or her own. (Actually, it’s worth noting that Elaine’s current treatment regimen, a one-year course of Avastin, falls into one of the four categories of currently established genomic treatments.)
This is important. This approach is credible, yet few physicians I’ve spoken with have more than a passing knowledge of what’s available. Which means that many patients with serious conditions who might benefit from it, don’t, because their doctor is too immersed in the day-to-day to really understand it.
We’re now seriously assessing going down this path. Steve Buckley, our wonderful gynecologic oncologist, sat in on our call with Jennifer Levin-Carter, MD, the Founder of N-of-One, and is thinking through this with us. If we proceed, Dr. Buckley would still manage Elaine’s case, but presumably he’d have access to a great deal of new, better information.
It’s important to keep this in perspective. When it’s all said and done, this approach, at this time, may provide no benefit for Elaine. But maybe it will.
And that what makes it seem worth it.
In the meantime, Elaine is as beautiful, happy and busy now as I can remember.
Our kitchen is doubling as a painting studio. There’s yoga and reading and some discussion of new ventures. Strange to say, but it’s a remarkable, productive time.
More as events unfold. Thanks again for going through this with us.
One thought on “Seeking What’s Possible”
Brian and Elaine, thanks for sharing your story. It is amazing. You both have great attitudes and strength. I will check out the resource and share with others as you say, this is how we learn.
Health and Happiness