Exceptional Responders

Hester Hill Schnipper, LICSW, OSW-C Program Manager, Oncology Social Work, emeritus

JULY 17, 2018

Seeking the Science behind Seeming Miracles

Exceptional responders are people who live much longer than ever anticipated, whose cancers respond incredibly well to treatment, who astonish their doctors with their ongoing health.

It is really important to understand that being an exceptional responder has absolutely nothing to do with will power or determination or positive thinking or eating broccoli. It has to do with cellular responses deep in our bodies, things over which we have absolutely no control. Having said that, there is every reason to hope that we can all be included in this group. As in, Why not me?

Over the years, as a veteran oncology social worker, I have known a number of people who fit this description. One, Carol Martin, who was treated by Drs. Ben Schlecter and Tobias Chapman in the Pancreatic Cancer Program of the BIDMC Cancer Center, is photographed and described in a National Public Radio story. Others have been people who were given what seemed like a death sentence and are alive and well many, many years later.

It is easy for me to list a number of women who were diagnosed with seemingly terrible breast cancers: large primary tumors, aggressive cells and 17 or 20 positive lymph nodes. I think of other women who had documented metastatic breast cancer and have gone on for 10 years, 15 years, maybe longer, with absolutely no change in their cancer status. Whatever cells were seen on MRI or CT scan may still be there, but they have not budged. Yes, they generally have continued on regular chemotherapy, and no one wants that—but we would all agree it is well worth it to stay healthy and alive in the face of ominous predictions. One woman, Ruth, did so well for so long that her doctor stopped her chemo, and she has continued to be just fine a decade later.

I have known people with other kinds of cancer whose responses have been similarly astonishing; they include people with melanoma, ovarian cancer, leukemia and, per Carol, pancreatic cancer.

If scientists can crack this code and figure out why some people do so very well, it will be a gigantic leap forward in cancer care.

Below is an excerpt from the NPR story and here's a link to read more.

Based at Harvard Medical School (with which BIDMC is affiliated), the project aims to become the first national registry for exceedingly rare cancer patients who beat overwhelming odds and respond mysteriously — even uniquely — well to treatments that failed to help others.

Researchers will gather masses of data on just about everything about these patients in hopes of finding patterns that can explain what went right.

Their responses are "so different, so outlying from any other clinical experience," said Dr. Zak Kohane, co-founder of the new network and chair of Harvard Medical School's Department of Biomedical Informatics. "It's a dramatic signal. So we know there's something there — but what is it?"

Hypotheses abound ...

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