One cancer patient’s dramatic response to immunotherapy. But …

Michael Joyce is a writer-producer with and tweets as @mlmjoyce

A 49-year-old Floridian named Judy Perkins with metastatic breast cancer, whose illness has progressed despite multiple trials of chemotherapy, goes into complete remission after being treated with immunotherapy by Steven Rosenberg, MD, PhD —  whom CBS dubs “a pioneer in harnessing the immune system to fight cancer.”

Rosenberg is no stranger to the spotlight. He became a media darling in 1985 when his research on interleukin-2 generated mega-coverage best described as long on hype but short on scrutiny. What was then heralded as a “watershed moment” and possible “cure” (yes, that word was dangled repeatedly) gradually faded to just a moment.

The media frenzy repeated itself again in 2006 — this time when Rosenberg reported using another form of immunotherapy to bring about remission in two people with advanced melanoma. Heart-warming anecdotes of the fortunate two prevailed over the 15 patients who died.

This week Rosenberg was in the spotlight again. And again, reporters were more smitten than skeptical.

Let’s start with the most egregious coverage: this video segment by Dr. Jonathan LaPook, a chief medical correspondent at CBS:

It’s an anecdote. But that doesn’t stop LaPook — a physician — from calling this one woman’s result a “game changer” and confide with the show’s host that it “blew me away.”

Only 90% of the way through the evidence-challenged segment do we get this:

This type of immunotherapy is still in its infancy … BUT … Judy’s success could open the door to use this kind of treatment for other solid tumors.

See that big, bold BUT? I highlight it because it seems to be going around.

The art of the quasi-cautious statement

Here are some big “but’s” from the BBC coverage: ‘Remarkable’ therapy beats terminal breast cancer :

  • “The team a the US National Cancer Institute says the therapy is still experimental, BUT could transform the treatment of all cancer.”
  • “Dr. Rosenberg added: ‘This is highly experimental and we’re just learning how to do this BUT potentially it is applicable to any cancer.'”
  • (Rosenberg again): “A lot of work needs to be done BUT the potential exists for a paradigm shift in cancer therapy.”

See the trend? Give an important caution BUT quickly trump it with a grandiose claim that is not supported by current evidence; a glowing, eye-catching, optimistic, and hopeful promise — as variously described in this single Guardian article :

Ground-breaking … remarkable … unprecedented … dramatic … miraculous … extremely promising … [and] the cusp of a major revolution

The art of legitimate caution

Some Twitter responses from earlier this week.

Legitimate caution — which by the way shows awareness of how science works and thoughtfulness towards those with cancer eager for new advances — looks more like this:

  • Perkins was just one of three breast cancer patients in this Phase II clinical trial. One subject died of an infection and the other did not respond. This experimental approach is not currently available.
  • NPR reported amongst 45 total patients in the trial with a variety of advanced cancers (ie. colon, liver, lung) there were 7 responders (15%).
  • There are many types of immunotherapy (Perkins’ was based on “Tumor-Infiltrating Lymphocytes,” or, TIL’s), many of which have significant side-effects and can cost well over $100,000/year.
  • There’s no way of knowing if Perkin’s remission can be attributed solely to the  TIL’s.
  • This approach, which relies upon identifying very specific targeted mutations in tumor cells, may only work on a limited number of tumor types.

It’s interesting that the aforementioned Guardian article, despite its parade of hyped language, did balance the story with some of these cautions. The BBC story barely did so. And the CBS report was appalling in this regard.

Also, there is another caution that rarely makes its way to the general public. Oncologists have long been aware of a lucky few — dubbed “Exceptional or Super Responders” —  who respond to a therapy that over 90% of other patients do not respond to. As mentioned in this 2015 research paper by oncologists Vinay Prasad and Andrae Vandross, it’s very hard to know if the exceptional response is because of the treatment given or because of some biological characteristic unique to the responder’s tumor. They add:

In addition, merely generating robust response rates may be no guarantee of an eventual improvement in overall survival … very few surrogate endpoints (such as response rate) have a strong correlation with overall survival in oncology.

The inevitable “but”

The prospect of harnessing our own immune system to attack cancer cells is a compelling and worthwhile avenue of research.

But as it stands now there’s insufficient evidence to make statements regarding efficacy, safety, costs, or how these treatments stack up against existing therapies.

So, at issue here is NOT whether this research is worthwhile, but how journalists handle the “buts” that are inevitable, important, and invaluable.

The case report of Judy Perkins — as published in Nature Medicine as a “letter” — can be found here.

The associated news release from the National Cancer Institute/NIH is here.

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Comments (4)

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Charles Carter

June 8, 2018 at 1:26 pm

It’s heartwarming to see even one patient get such a good response. But I agree any story that focuses on treatment needs to provide more information.
Dr Prasad is far more the expert than me. 30 years ago I was taught that complete response (no detectable tumor anywhere) frequently translates to survival benefit, while partial response (tumor shrinkage but still detectable) does not. And sadly, breast cancer is among a very few notorious for late recurrences, over 5 years.

Katherine OBrien

June 8, 2018 at 10:31 pm

Great minds think alike…

Holly Anderson

June 12, 2018 at 5:47 am

I agree that the story was hyped by the media BUT (couldn’t resist) it is a story worth telling. I first met Judy at the NBCC Leadership conference in 2017. I was struck by her determination to leave no stone unturned. It was remarkable to me that she, almost serendipitously, discovered the opportunity to participate in this trial through her participation in Project LEAD a year or two earlier. This is where she encountered one of the investigators. One thing led to another and, BAM, she qualified and was entered in to the trial. I think this (her story) is an important lesson about advocacy and, in particular, self-advocacy. After every other chemotherapy protocol failed, she was adrift. I don’t think this is a false hope story and I’d like to share it. Regardless of how or why, Judy responded to the therapy. Have you identified any news outlet that told the story responsibly?

Dan Keller

June 19, 2018 at 11:41 am

Two questions: 1 Quoting this potential therapy as “$100,00/year” implies that treatment would have to be ongoing. But one idea is that anti-tumor lymphocytes and their progeny would continue to exist and circulate, so why would the therapy need to be given on a continuing basis? 2. Would the actul mutations need to be identified, or would clinicians just need to identify a population of anti-tumor lymphocytes by their reactivity to tumor tissue, regardless of the specific mutations, ie, any lymphocytes showing cytotoxicity against the tumor would be the ones you want to harvest, expand, and infuse. In essence, they would be “self revealing.” As for the CBS piece, it is a misnomer to say that the lymphocytes react to the mutations, They react to the cell surface antigens coded for by the mutations.