No, this post is not about fashion. Or the latest smart phone technology. Despite the many guides to BlogHer popping up around the internet, like flowerpots in my neighbor’s yard, this post is not about who will be wearing what to what parties, how best to multitask with other conference participants online while sitting in the same room, or how to leverage your writing into a fulltime job. (Although now that you mention it, yes, I will be reading those during my downtime later today.)
This post is about being on a different cutting edge — the cutting edge of research.
Since I was very young, I wanted to work at the cutting edge. To be a scientist. To explore space. To travel to laboratories and conferences across the world and talk with colleagues. To think deeply and to put concepts together that no one had ever done before in quite. that. way. To push the edge of research just a little farther, in just a little different direction, and to make a small (like isotope small) but new contribution to understanding the universe in which we live.
In my plans, though, it was about devising experiments using my brains, not experimenting with medical treatments with my body.
Since my recurrence in April, I’ve been obsessed with the latest research, the latest hopes, the latest drugs and hopes for a cure for my inflammatory breast cancer. I’ve read the articles. I’ve parsed the studies. I’ve talked to oncologists here and specialists in New York at one of the premier cancer centers in the world – Memorial Sloan Kettering. At Sloan Kettering, I met an oncologist I respected deeply (from his work on IBC), a junior doctor doing fascinating research (on mothers diagnosed with cancer during or shortly after pregnancy), and we went over the latest studies that showed new hope from a drug combo still in development.
On the cutting edge.
Avastin was hailed in 2008 as an amazing new drug, the first shown to postpone the recurrence of cancer when combined with more traditional chemotherapy. Avastin took a different approach, and so it could be combined with the chemos that kill cells as they divide. (Chemos kill all cells, remember. Since cancer (and hair) cells divide fastest, they are killed fastest. Chemo works by trying to kill you. Since the cancer cells divide faster than cells in your lungs (for example), cancer cells are killed just a wee bit faster than you are. This is why chemo is so hard to tolerate. It kills the cancer cells fastest, but it also kills cells trying to grow hair (hence the baldness), repair your stomach lining (hence the nausea and vomiting), and repair your body from everyday wear and tear.)
Avastin was hailed as a near miracle drug, as it starved the cancer cells, aggregated into tumors, of the blood that they needed to grow. In early studies, it nearly doubled the progression-free-survival time — the time that the cancer survivor could live her “new normal” life without returning to active treatment, and the specialist I met with was cautiously optomistic about its potential. A number of studies were due to report out soon, he said, and he had just returned from ASCO, where he heard about encouraging news about progression-free-survival time from the researchers involved. He would recommend that my oncologist add Avastin to my treatment in hopes of pushing progression-free-survival — giving me more time to be “strong mommy” to my little boys.
I pushed back. I wanted hope, I said. I wanted progression-free-survival, I did, but didn’t the latest studies also show no difference in lifetime expectancy? Didn’t they show that, quality of life aside, there was no difference in quantity of life?
Yes. This was true, he said. But this was a step. A step in treatment, and it held promise for people with metastatic cancer, he said, and locally metastatic disease like mine by extention. We went back and forth over that table discussing pros and cons, and came away satisfied that this oncologist really knew his stuff — and he does, he does — and he recommended Avastin.
We came away from that appointment jubilent, celebrating with a fancy Italian dinner at the restauraunt next door, wondering how many patients had celebrated good news there before us, lifting our glasses ($5 for a diet soda? New York is crazy!) to the new hope that it held.
I meant to blog about it. I did. But it was too personal. Too raw. Too critical to my treatment to open up to the internets for examination. So I didn’t “get around to it.” I told myself that I was just too busy to write the post, that there were too many pictures (Susan happily pointing to the building sign; C lounging on the comfy rest in the elevator; the chandelier and ’50s decor in the lobby) to integrate, that it would be a great post to write later … but I just didn’t do it.
And then, yesterday, an advisory committee to the FDA reviewed the reports from the new trials, held an open hearing, and stated unanimously “the risks and side effects of Avastin outweighed its benefits when used alongside a chemotherapy drug.”
At the end of the day, the results were in. The panel urged the FDA to revoke approval of Avastin for breast cancer treatment. The promising benefits of the early studies were not borne out in later studies, and the drug that yesterday was thought to be so promising for the future is no longer being hailed as such. In these larger studies, of thousands of patients, the progression-free-survival time had not the 5 month increase shown by the first studies, but only one to three months, depending on the study. And one to three months, said the panel, was not worth the side effects. Side effects demonstrated in the new studies include significant neurological problems including strokes, bleeding, hypertension, and the like. These “side effects” are damaging to one’s quality of life overall, making it not worth the extra one to three months that this $88,000 drug (unsubsidized cost) may offer.
The FDA will likely follow the panel’s recommendation. Doctors will only be able to prescribe it “off label” for breast cancer, which means insurance companies will not reimburse for its use. The promise that the cancer communities had hoped for has been dashed.
But this is the way that research works, I must remember. There are breakthroughs, and then there are follow up studies. Science is not based on hope or miracles, but testing and proof. Studies must be repeatable with consistent results. That’s what we learn in science, and why the scientific method that your children are learning is so very, very important. Science is not magical thinking. Science is irrefutable. And if one result is not repeatable, it’s not science. It’s just luck.
We need more than luck. Since the studies now show that this drug will not help patients significantly more than it harms them, the panel is making the right decision. The oncologists are being given good, science-based guidance. My oncologist will not recommend the Avastin when I meet with her the week before BlogHer. And when I come home, I will take a single chemotherapy pill each morning and evening, and not supplement it with this drug, Avastin, for which we held out such hope.