Exceptional responders are patients who meet the following criteria:

Received a treatment in which fewer than 10 percent of patients had a complete response or a durable (lasting at least 6 months) partial response based on clinical trial data or extensive historical experience in the context of the patient’s tumor type.

Yup, that’s me! I’m an exceptional responder! In case you are one of the few people on the planet that did not hear my news—brain and pet scans last week showed I have no evidence of active disease or NEAD as we like to call it. I had an exceptional or rare response to the experimental immunotherapy drug I took last year that almost killed me. Pretty unbelievable! Last year when I was finally released home after two months in the hospital, someone asked me if I would do it again if I had the chance. At the time my answer was “hell no!” Now….. I guess I would say it was terrifying and traumatic at the time, but I have been living without chemo for 12 months and now get this remarkable response? Go figure. In cancer world, no rules apply ever.

What does this all actually mean? I still have a tumor under my left kidney and some spots in my liver but they have gone dark. They do not light up on a scan and show no sign currently of metabolic activity. Those pesky cancer cells are not dividing and mutating and growing at the moment. It doesn’t mean they won’t inexplicably wake up and start moving again, but for now they are asleep, the best news one can get with stage iv cancer. It is incurable but for now, it is on pause.

This brings me back to the major issue at hand–clinical research and the need for more funding to find a cure. We are a long way off. Cancer is tricky and sneaky and comes packaged and masked in a myriad of ways. There is no one type of breast cancer and no one type of triple negative breast cancer. The problem is to figure out who will respond to what–looking for that proverbial needle in the haystack. Modern science has only recently recognized that even though a trial medicine only works for a few patients, they should study those patients through genomic testing of their unique mutations to figure out what makes them respond when so few did. Before, they would throw the “failed” medicine out with the bath water. Now they know that following the genetic pathways can lead them to discovering astounding mutations that allow for more precision targeting.

They found my needle in the hay stack because I happen to have a kind of cancer that makes proteins that bind to PD-1 and shuts down my body’s ability to kill the cancer on its own. The drug I took blocked or inhibited PD-1 and allowed my immune system to recognize and attack the cancer. (It kinda went over board at first and attacked every organ in my body). Does this work for everybody? Clearly it does not–ya gotta have the mutation PD-1. The drug I took is experimental and still not approved by the FDA for widespread use. Most women do not have access to it unless they live near a major cancer center in the big city that runs clinical trials.

Why am I going on about this? Because this is a very scary time in cancer world. “We are on the cusp of major advances in immunotherapy and precision medicine, and if we pull back, it will cost many lives that could have been saved by faster progress.” Cancer research receives the majority of its funding from the government. Our new administration has proposed a $5.8 BILLION cut in support for the National Institutes of Health (NIH) which would be an unmitigated disaster for biomedical research. The so called “race” for a cure would slow to barely a crawl. Who hasn’t been touched by cancer? People will die without access to drugs that they need faster.

Even is you don’t care about cancer so much (what kind of soulless person are you and why are you reading my blog?), biomedical research helps the economy by creating jobs 7 times greater than without it.

Ironically, what cracks me up, is that every night Tim/Blanket and I watch the national evening news (who doesn’t love David Muir?) and we are blitzed with commercials about “break through” medications that actually benefit only a few people, like Keytruda. (Just watching the commercials you would think everyone could benefit from cialis and something for plaque psoriasis). We don’t, but a few people do, and these commercials give the false impression that it’s all about pharmaceutical companies making big bucks and lining their pockets. What we need is research! and the money to fund it!!!!!

Okay, back to me personally. Why do I care about any of this as long as I am doing well? I only just found the courage to read “When Breath Becomes Air”, very afraid of how a memoir by a young neurosurgeon who died of metastatic lung cancer would affect me. The book is profound–it makes me want to grab my yellow highlighter to mark and tab some of the incredibly insightful and touching things he writes about so I can go back and reread them over and over again. I can barely read them aloud to Tim without cracking. But at the end of the day, what he questions is what meaning does his life have? No one knows how much time they have left, but I want to use my time to bring attention and raise money to fund research for metastatic breast cancer and to say I made a difference in the lives of my kids and your kids. I think in that, my life has meaning.

I know my life can never be normal again. My NEAD status is bittersweet because death still stalks me.  I’m still afraid to hope on most days knowing that only 1 to 3% of any metastatic patients experience extended remission. I’m afraid I’ll disappoint you all when it inevitably comes back and I die. But, for now, I feel wrapped in a huge blanket of love and support that all of you have given me. For now, I am alright.

Love,

Barbara, NEAD

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Written by barbigelow

Wife, mother, school psychologist, cat lover

5 comments

  1. Thrilled beyond words for you , BJ… My prayers and love will continue… God has plans for you, Tim ,or /and your so beautiful little “coconuts”! Ride the wave , my friend… Blessings to you all. I know you will enjoy each moment as will your friends at your success and health! ❤ ❤ ❤ ❤

    Liked by 1 person

  2. Your life does have meaning Barbara. I’m a 43 year old woman who has recently been diagnosed with Metastatic oestogen positive, HER2- Breast Cancer. I have in total 13 Tumours in my spine and ribs, all devastating my nervous system, all derived from one tiny 15mm breast tumour. I had pain in my ribs and diaphragm, underwent investigations and the next minute I have stage IV incurable cancer. I spend my days with my beautiful family being positive, telling them every chance I get, ‘I will beat this thing’. Then I spend my nights reading everything I can to keep me positive, for my families sake. Your story gives hope to people like me. Thank you for giving me hope Barbara. Your news is incredible, bless you. x

    Liked by 1 person

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