A Real Cure? Really?
I think I’ve joined all of the metastatic breast cancer communities I can find. They are wonderful, so helpful and full of support and information. The sisters help so much -- we share wisdom and tears every day. But we are a jaded lot! We see people posting baking soda cures and miracle clinics in Germany, and we hop on them pretty fast. We guard our vulnerability to false hope. There are many evil folks making money on false hope. Last week's news was different; yet events still provided a serious challenge to my well-trained sense of journalistic ethics.
Ages ago, I graduated from Michigan State University with a bachelor's degree in journalism, and the skills I learned never failed me. Among the great classes I took: how to spot a fake research story, also known as Advanced Reporting. “Be skeptical,” they taught me; “ask if the sample is large enough, if the study is controlled by an untreated group, and most importantly: follow the money. Who paid for the study, and who profits by it? If it looks too good to be true, the money will tell you.” That tutelage really kicked in last week.
The Miracle Cure
| T-cell Therapy Process
By Simon Caulton - Own work, CC BY-SA 3.0,
Here are several versions of her story; note how different each are:
The National Institute of Health press release:
One of the better blogposts:
Ok, now here’s a quiz for you:
- What is the current success rate for this treatment?
- What is the sample size of the study?
- How does it work?
- What are the risks?
- Who benefits from this story going public? Where’s the money?
- Knowing me, which is my favorite story, journalistically speaking?
First, Some Observations
Judy Perkins is a pioneer and we are proud of her contribution to saving our lives. We are so happy for her. But, with my finger on the pulse of our mood, I noted how this affected everyone. The old warhorses like myself pumped out a few cautions, but this news story changed us. It gave us hope. I am struck at how much and how quickly it affected some of us. This is one of our forum sisters:
I really need to vent. I’ve been telling people about the exciting and hopeful results of Judy Perkins’s trial, and so often the listener tries to burst my bubble. “Yeah, but we’re so many years away from that being a reliable treatment...blah blah blah.” People can be a great comfort, but I’m so disgusted with people lately. It’s the FIRST time I’ve had HOPE in YEARS. It’s a great feeling, and I don’t want anyone to take that away!!
I have to admit this: I’m one of the skeptics. I reminded the sisters that we’ve seen this before, with the vaccines that didn’t work, and the targeted therapies with big side effects and low response rates. This is just a case study and a small sample. I explained that this is the therapy everyone is struggling with: solid tumors are hard to address with T cells in the body systems. I reminded my sisters that we can’t call anything cured until about a decade out. Cancer is a sneaky thief that knows how to hide out for so very long, that two or three years is a very short time to trumpet success. To her credit, Judy herself says the same; she did not call herself cured. It was the director of the NIH who used the term before Congress.
We are very sensitive about the word “cure.” There are no known cures yet. Time tells us cancer is cured. However, they do use the term for other cancers with this therapy.
In the letter published in Nature Medicine, we learn that Judy is the only one of three patients to survive. One of our sisters died from the disease, without adequate response, and one developed a staph infection. Judy tells us the path wasn’t simple either, from her posts over the years. Her situation was dire, but the response was quick. She reports being on no therapy right now, which is very much Mets Nirvana: being normal again, even for a time.
Right now, T-cell therapy is FDA approved only for certain leukemias and soft tumor cancers like lymphoma. The price tag is staggering: about $300,000 to $500,000 if it works. (This is considered a fair price, given the expense of continued treatment. They are probably right.) The process involves removing a sizable tumor, looking for successful white blood cells (Tumor Infiltrating Lymphocytes or TILs) that attacked the tumor, sequencing their genes (much like my genomic study) and growing billions of the successful cells, returning them to the body to use its normal systems to fight back.
You can see where this would work for soft cancers; they are already in the blood and lymph systems, so they are easy to find. But is there really hope for the more difficult cancers?
My favorite article is the Guardian, as well as Katherine O’Brien’s blog post on LinkedIn, because they offer us a realistic viewpoint; one with greater integrity from an ethical standpoint. There are many who do not respond across all cancers right now; the response rate over all cancers is around 15%, but the sample is so small there are no conclusions to draw yet. There may be a risk of a life-threatening immune response from the body called Cytokine Release Syndrome (CRS). My CRS-like response to Kadcyla was the impetus for obtaining a second opinion from MD Anderson. My second opinion oncologist said CRS is much, much worse -- and I thought I was dying, so I can only imagine how much worse CRS is. One of my sisters reports that her cerebellum was affected by an earlier study, and she is permanently disabled. This is an advance but it’s fairly tricky, no matter how much hope we gather from this story.
So, why did they publish this story now? Judy does truly represent a breakthrough, for one. She is a first. For another, the National Cancer Institute and the National Institute of Health need better funding from Congress. Having a direction for treatment and real hope for advancement, gives Congress impetus to fund more. I truly hope they do. Please be sure to encourage your congress member to fund metastatic research.
|Historical funding for NCI. Source, American Society for Clinical Oncology, CCA Report 2018 https://www.asco.org/sites/new-www.asco.org/files/content-files/research-and-progress/documents/CCA-2018-Report.pdf|
What about Hope?
Despite my misgivings, I, too, have been changed by Judy’s story. Maybe there is hope. Maybe I’m not dying quite so quickly as my deepest fear suggests. Most importantly, maybe there is hope that I’m not going to be in misery for the rest of my days, trying to survive instead of live.
I’m almost surprised that I feel that way, given my realistic point of view on life lately. I may even explore joining the next phase trial. Meanwhile, I’m no longer posting cautions about this study. We deserve some hope.