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Tag: Cancer

Patients are Not “Consumers”: My Cancer Story 

By JEFF GOLDSMITH

On Christmas Eve 2014, I received a present of some profoundly unwelcome news: a 64 slice CT scan confirming not only the presence of a malignant tumor in my neck, but also a fluid filled mass the size of a man’s finger in my chest cavity outside the lungs. Two days earlier, my ENT surgeon in Charlottesville, Paige Powers, had performed a fine needle aspiration of a suspicious almond-shaped enlarged lymph node, and the lab returned a verdict of “metastatic squamous cell carcinoma of the head and neck with an occult primary tumor”. 

I had worked in healthcare for nearly forty years when cancer struck, and considered myself an “expert” in how the health system worked. My experience fundamentally changed my view of how health care is delivered, from the patient’s point of view. Many have compared their fight against cancer as a “battle”. Mine didn’t feel like a battle so much as a chess match where the deadly opponent had begun playing many months before I was aware that he was my adversary. The remarkable image from Ingmar Bergman’s Seventh Seal sums up how this felt to me.

The CT scan was the second step in determining how many moves he had made, and in narrowing the uncertainty about my possible counter moves. The scan’s results were the darkest moment: if the mysterious fluid filled mass was the primary tumor, my options had already dangerously narrowed. Owing to holiday imaging schedules, it was not until New Years’ Eve, seven interminable days later, that a PET/CT scan dismissed the chest mass as a benign fluid-filled cyst. I would require an endoscopy to locate the still hidden primary tumor somewhere in my throat.  

I decided to seek a second opinion at my alma mater, the University of Chicago, where I did my doctoral work and subsequently worked in medical center administration.

The University of Chicago had a superb head and neck cancer team headed by Dr. Everett Vokes, Chair of Medicine, whose aggressive chemotherapy saved the life and career of Chicago’s brilliant young chef, Grant Achatz of Alinea, in 2007.

If surgery was not possible, Chicago’s cancer team had a rich and powerful repertoire of non-surgical therapies. I was very impressed both with their young team, and how collaborative their approach was to my problem. Vokes’ initial instinct that mine was a surgical case proved accurate.

The young ENT surgeon I saw there in an initial consultation, Dr. Alex Langerman performed a quick endoscopy and thought he spotted a potential primary tumor nestled up against my larynx. Alex asked me to come back for a full-blown exploration under general anaesthesia, which I did a week later. The possible threat to my voice, which could have ended my career, convinced me to return to Chicago for therapy. Alex’s endoscopy found a tumor the size of a chickpea at the base of my tongue. Surgery was scheduled a week later in the U of Chicago’s beautiful new hospital, the Center for Care and Discovery.

This surgery was performed on Feb 2, 2015, by a team of clinicians none of whom was over the age of forty. It was not minor surgery, requiring nearly six hours:  resections of both sides of my neck, including the dark almond and a host of neighboring lymph nodes. And then, there was robotic surgery that removed a nearly golf ball-sized piece of the base of my tongue and throat. The closure of this wound remodeled my throat.

I arrived in my hospital room late that day with the remarkable ability to converse in my normal voice.

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Interview: Sarah MacDonald, Author, The Cancer Channel

by MATTHEW HOLT

I met Sarah MacDonald in the early 2000s. She is the ultimate extrovert who sings, cooks, maintains a huge circle of friends, and lives life to the fullest–all at a pace & level most of us can’t imagine. In the early 2010s Sarah was flying high. Newly married, trying to get pregnant, all while being a Silicon valley business exec who had increasingly senior roles at eBay. Then in 2012 she was diagnosed with two completely separate types of cancer. And in her head “The Cancer Channel” started playing nonstop.

That became the title of her book. I just read it and I literally couldn’t stop. It’s practical, it’s heart-wrenching, it’s warm, it’s funny (yes, funny!). And it’s an amazing look at the exact experience of someone going through cancer. Or in this case cancer x 2. I was lucky enough to interview Sarah (so there is a very happy ending). So please watch this and buy & read the book

About That Cancer Moonshot

BY KIM BELLARD

Joe Biden hates cancer.  He led the Cancer Moonshot in the Obama Administration, and, as President, he reignited it, vowing to cut death rates in half over the next 25 years.  Last month, on the 60th anniversary of President Kennedy’s historic call for an actual moonshot, he vowed “to end cancer as we know it. And even cure cancers once and for all.”

But, as several recent studies show, cancer is still surprising us.  

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THCB Gang Episode 90, Thursday May 5 – Cancer Special

#THCBGang on May 5 was an extraordinary special on cancer & navigation. Everyone on this gang has been touched by cancer as a patient or caregiver.

Joining Matthew Holt (@boltyboy) will be fierce patient activist Casey Quinlan (@MightyCasey); Jennifer Benz (@Jenbenz); Suntra Modern Recovery CEO JL Neptune (@JeanLucNeptune); patient advocate Grace Cordovano (@GraceCordovano); policy consultant/author Rosemarie Day (@Rosemarie_Day1); Jeff Goldsmith; Jennifer Benz (@Jenbenz); PLUS Adam Pellegini (@adampellegrini) from cancer navigation company Jasper Health. It really was a great conversation about what to do (and what is being done) to make the experience better for people with cancer and those that love them.

You can see the video below & if you’d rather listen than watch, the audio is preserved as a weekly podcast available on our iTunes & Spotify channels.

New Cancer Care Navigator Thyme Care Starts Out with $22M Series A & Big Name Backing

By JESSICA DaMASSA, WTF HEALTH

Thyme Care is a cancer navigation platform that is looking to use technology to make the kind of high-touch care coordination usually only found at Centers of Excellence available to oncology practices across the country. The navigation we’re talking about is typically quarterbacked by experienced oncology nurse navigators, and is known to have a direct impact on a patient’s experience and their health outcomes. Thyme Care’s platform not only scale-ups this expertise, but also augments it with analysis of claims data and EMR data to help those navigators quickly detect which patients might be at higher risk for poor outcomes and which interventions might help mitigate those risks – whether that be addressing social determinants of health issues like transportation to appointments, or just more quickly spotting gaps in care.

Thyme Care’s President & Chief Medical Officer Bobby Green (an oncologist himself) introduces us to the tech platform and explains how, among a competitive field of tech-enabled care navigators, it’s managed to stand apart enough to win Medicare Advantage plan Clover Health as an early client and to gain a $22 million dollar Series A investment from platform-savvy investors like Andreessen Horowitz and AlleyCorp. (Frist Cressey Ventures, Casdin Capital and Bessemer also participated in the round, which was announced in October 2021.)

As the business looks to scale, what’s to make of all its connections to Flatiron Health, arguably health tech’s best-known cancer care platform? Lots of alumni on the cap table and in the biz, including Bobby himself! Find out more about expansion plans and points of differentiation in this quick get-to-know-you chat.

Our Cancer Support Group On Facebook Is Trapped

Our Experience on Facebook Offers Important Insight Into Mark Zuckerberg’s Future Vision For Meaningful Groups

By ANDREA DOWNING

Seven years ago, I was utterly alone and seeking support as I navigated a scary health experience. I had a secret: I was struggling with the prospect of making life-changing decisions after testing positive for a BRCA mutation. I am a Previvor. This was an isolating and difficult experience, but it turned out that I wasn’t alone. I searched online for others like me, and was incredibly thankful that I found a caring community of women who could help me through the painful decisions that I faced.

As I found these women through a Closed Facebook Group, I began to understand that we had a shared identity. I began to find a voice, and understand how my own story fit into a bigger picture in health care and research. Over time, this incredible support group became an important part of my own healing process.

This group was founded by my friends Karen and Teri, and has a truly incredible story. With support from my friends in this group of other cancer previvors and survivors I have found ways to face the decisions and fear that I needed to work through.

Facebook recently had a summit to share that groups are at the heart of their future. We had a summit of our own with some of the amazing leaders within the broader cancer community on social media.

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Financial Toxicity is Hurting my Cancer Patients

By LEILA ALI-AKBARIAN MD, MPH

As news of Tom Brokaw’s cancer diagnosis spreads, so does his revelation that his cancer treatments cost nearly $10,000 per day. In spite of this devastating diagnosis, Mr. Brokaw is not taking his financial privilege for granted.  He is using his voice to bring attention to the millions of Americans who are unable to afford their cancer treatments.

My patient Phil is among them. At a recent appointment, Phil mentioned that his wife has asked for divorce. When I inquired, he revealed a situation so common in oncology, we have a name for it: Financial Toxicity.  This occurs when the burden of medical costs becomes so high, it worsens health and increases distress.  

Phil, at the age of 53, suffers with the same type of bone cancer as Mr. Brokaw.  Phil had to stop working because of treatments and increasing pain. His wife’s full time job was barely enough to support them. Even with health insurance, the medical bills were mounting. Many plans require co-pays of 20 percent or more of total costs, leading to insurmountable patient debt.  Phil’s wife began to panic about their future and her debt inheritance. In spite of loving her husband, divorce has felt like the only solution to avoiding financial devastation. 

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Last Month in Oncology with Dr. Bishal Gyawali

By BISHAL GYAWALI MD

Me-too deja vu

I read the report of a phase 3 RCT of a “new” breast cancer drug but I had the feeling that I had already read this before. Later I realized that this was indeed a new trial of a new drug, but that I had read a very similar report of a very similar drug with very similar results and conclusions. This new drug is a PARP inhibitor called talazoparib and the deja vu was related to another PARP inhibitor drug called olaparib tested in the same patient population of advanced breast cancer patients with a BRCA mutation. The control arms were the same: physician choice of drug, except that physicians couldn’t choose the one drug that is probably most effective in this patient population (carboplatin). The results were nearly the same: these drugs improved progression-free survival, but didn’t improve overall survival. In another commentary, I had raised some questions on the choice of control arm, endpoint and quality of data about the olaparib trial when it was published last year. This current talazoparib trial is so similar to the olaparib trial that you can literally replace the word “olaparib” with “talazoparib” in that commentary and all statements will stay valid.

The oncology version of half-full, half-empty glass

The PARP inhibitors olaparib and niraparib are also approved in ovarian cancer based on improvement in progression-free survival (PFS), without improving overall survival (OS). If a drug doesn’t improve OS but improves only PFS, it should also improve quality of life to justify its use. According to two new reports, these drugs do not appear to improve quality of life. The niraparibtrial reported that the patients were able to “maintain” their quality of life during treatment while the olaparib trial reported that olaparib did not have a “significant detrimental effect” on quality of life. I find it remarkable that a drug that isn’t proven to improve survival is lauded for not significantly worsening quality of life … at $10,000 a month!

It is also important to recognize that these drugs were tested as maintenance therapy against placebos. For “maintenance therapies,” as explained in this paper, improving PFS alone is not an important endpoint. That’s why I am also not excited about this new trial of sorafenib maintenance in ovarian cancer. A drug has to be very ineffective to fail to improve even PFS as a maintenance therapy against placebo.
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A Rosa Parks Moment is Coming in Phase 1 Cancer Trials

By DAVID C. NORRIS, MD

I want to tell you about the most exciting discovery I’ve made in 2+ years of research on dose individualization methods for phase 1 cancer trials. This discovery has nothing to do with any of the technical problems I’ve confronted and solved along the way. It involves no gigantic equation, no table of simulations results, and no colorful plot. Rather, it’s a discovery about sources of power to innovate in drug development.

In general, how would you describe the balance of power between Big Pharma and the individual patient? The question seems ludicrous—maybe even offensive—in light of ongoing scandals with price-hikes and shortages for critical drugs. But in the special area of trial methodology, I’ve got a real surprise for you…

One result from my DTAT research has been a clear demonstration that 1-size-fits-all dose finding in phase 1 cancer trials can cut the value of a drug in half, or even drop it to zero by setting the drug up for failure in phase 2 or 3. Although this economic argument has never been made quite so explicit and rigorous, I am certain the underlying principle comes as no surprise to anyone. (I note hardly anyone bats an eye when I detail the math.) Continue reading…

Will Cancer Drugs Ever Be As Affordable As Retrovirals in Low and Middle Income Countries?

In 2014, the majority of international health aid was dedicated to HIV. So, one might reasonably assume that this is the largest health problem facing the world. Yet, HIV only constitutes 4% of the global burden of disease. In 2014, noncommunicable diseases (NCDs) made up 50% of the entire disease burden, but only received 2% of all global health funds.

The disease burden of NCDs is fast outpacing that of infectious diseases. Despite this, the proportion of global health financing dedicated to combatting NCDs has remained constant over the past 15 years at 1 to 2%.

Currently, 32.6 million individuals are living with cancer (diagnosed in the last five years). In 1970, 15% of new cases were in low- and middle-income countries. In 2008, 56% were in low- and middle-income countries. By 2030, this proportion is expected to be 70%. So, not only is the burden of NCDs rising globally, but it is also beginning to disproportionately affect countries with the least resources to deal with them.

But, if NCDs have been steadily increasing in low- and middle-income countries, why has global action not followed suit? Continue reading…

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