May 21, 2017: Other Patients

As it turns out, Duke and Hackensack had spoken and we learned the outcome of their conversation on May 21, 2017.

Hackensack was a firm “no” on giving Matt the infusion of Avastin. Not only were they strongly opposed to our plan, but they also encouraged Matt to go to Duke and push them for more information to make an informed decision.

My memory, as it relates to Hackensack’s exact questions, is a little fuzzy here. I wrote in a text to a friend that the Hackensack doctor emailed us to let us know he would not be administering the Avastin and urged us to ask more questions, but I cannot find that email. (Possibly the only email Matt or I ever deleted, apparently.) So I have only my memory to aide with this part of the story.

Here’s what I remember. Hackensack wanted us to ask Duke about the next step. What would happen if Avastin failed? What would happen if polio failed? How long would Matt need to stay on Avastin? How have other patients fared on/after Avastin? Ultimately, all of Hackensack’s questions boiled down to this: what was the plan for Matt if the polio virus vaccine did not cure him?

We did ask the Duke doctors and nurses these questions. And we heard words in the form of a response, but not an answer, which is a subtle but important distinction. Because what I remember most clearly is leaving the exam room or hanging up after the phone call and being just as in the dark as I was before. A lot of comforting words were said, but the responses were blurry versions of “we don’t know.”

Matt and I accepted “we don’t know” as an answer. Though it was immeasurably frustrating, we understood we were in a clinical trial with less than 100 other patients and sometimes even the doctors were taking shots in the dark. But the question I keep coming back to now is about the other patients. (Nothing specific, I do have a vague understanding of HIPAA.) We never got an answer to this question and I chalked that up to some rules about revealing results in clinical trials.

I don’t know, still, what the rules are about disclosing results or outcomes to patients. A few weeks before this date last year I’d found a website where cancer patients and caregivers could exchange information and stories. I found a woman whose story seemed identical to Matt’s: GBM, polio, recurrence, Avastin, and in her most recent post she was doing well, cancer free even. I sent her a message through that website. She never responded. She hasn’t posted again either.

There are a million reasons I’m writing our story, and this is one of them. For those patients who will come after Matt, who don’t get a response to the question about how other patients have done. Here is one story. But it is only one story. And there may be other stories that end differently. I hope there are.

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