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In 2019, at 48-years-old, Rochelle was diagnosed with metastatic breast cancer. When she started unintentionally losing weight, going from about 120 pounds to 94 pounds over the course of several months, her doctor became concerned something more was underlying the disease. He diagnosed Rochelle with cachexia — a complex metabolic condition that can lead to unintentional weight loss and muscle wasting — ten months later. 

Cachexia can impact patients with chronic illnesses like cancer and congestive heart failure, among others, but it isn’t widely known, even by many medical professionals. 

Rochelle

“Until my doctor mentioned the cancer cachexia, I thought most of the symptoms were just related to the side effects of the medicine, or the [cancer] itself,” Rochelle says. “I didn’t know.”

Those symptoms include weakness, fatigue, and loss of appetite. “There’s a part of me that knows I need to eat, but it just doesn’t taste the same,” Rochelle says. Food also often hurts to swallow and is difficult to hold down. “Eating is going to have to be, unfortunately, like a job,” she says. “Whatever the feelings are, I’ve got to get it down.”

Even more than the physical challenges, the mental and emotional impact has been painful for Rochelle. “The physical heals, eventually, but that other piece is more difficult,” she says. “It’s just taken every ounce of energy to just get up some days. Like just to do the things that I know make a normal life.”

But Rochelle does get up — for her faith, her husband, her family, her friends, and the people who tell her that her strength is an inspiration to get through their own difficult days. “I feel deep down that this is bigger than me,” Rochelle says. “It’s not so much to impact me, but it’s to help somebody else…I just feel like there’s more for me to do.”

A new approach to cachexia 

Though the term cachexia has long been used to describe a state of weight loss and muscle wasting due to poor nutrition, it wasn’t until the mid 2000s that cachexia was formally defined as a syndrome with complex metabolic abnormalities. Since then, the definition has continued to be refined.

When Pfizer’s cachexia team formed six years ago, most people in the pharmaceutical industry and medical community “didn’t even know what cachexia meant,” says Danna Breen, Ph.D., associate research fellow at Pfizer. Breen and her team were able to leverage their prior research on obesity to grow their understanding of cachexia, investigating how the pathways responsible for appetite suppression could be put to work to increase appetite instead.

Danna Breen, Ph.D., associate research fellow at Pfizer.

This was a novel approach to cachexia treatment. Previously, “it was all very muscle-centric approaches, trying to restore the muscle mass,” Breen says. But she and her team spoke with patients, caregivers, and medical oncologists to make sure they were targeting the symptoms that patients most want to be addressed. 

“In lots of patient interactions we’ve heard loss of appetite, actually, is their number one concern because they don’t want to go out to eat with their loved ones, they’re just not having the energy to pick up the fork or interested in participating in that part of daily living,” Breen says. Once appetite is restored, the hope is a cascading effect: Eating more would increase body weight and muscle mass, which would reduce fatigue, which would allow patients to feel and function better.

In addition to improving quality of life, reducing the effects of cancer cachexia could save lives by increasing tolerance for treatment. “If a patient isn’t doing well on the ECOG scoring system [which is a measure of a patient’s functioning in terms of their ability to care for themself] in oncology, they can’t continue on to the next round or they have to dial back the dose,” Breen explains. “Part of that can be related to the muscle wasting piece, and just an overall tolerance in how the patient feels. It’s physiological and psychological. Additional studies will be needed to further understand the overall impact of alleviating cachexia on patient outcome.”  

There are no current treatments for cancer cachexia approved in the United States or Europe, and cachexia is still not widely acknowledged among health care providers, despite often occurring alongside certain cancers. But Pfizer clinicians working with Breen are currently studying safety and early signs of efficacy in clinical trials for a potential appetite-restoring drug, with the hope of developing a treatment for this life-threatening condition.

A powerful reminder

On September 29, 2021, Rochelle and Breen had the opportunity to meet virtually — with Rochelle in Columbia, Md. and Breen in Cambridge, Mass. — to discuss Rochelle’s experience with cachexia and treatments being developed. 

Rochelle shared a letter she’d written for Breen, explaining how cachexia “made life as I knew it unrecognizable” and expressing her gratitude for scientists who continue to develop potential medicines for the physical and mental changes she has experienced because of the condition.

From there, the two began a thoughtful conversation about which symptoms have been most difficult for Rochelle over the months since her cachexia diagnosis and why.

Rochelle and Breen met virtually on September 29, 2021

“I realized how much of my social life centered around food,” says Rochelle, smiling through the difficult topic. “Now the things that I used to do socially, I don’t feel comfortable doing them anymore because a lot of them center around food, and I just don’t want to smell it, I don’t want to be around it.” 

She goes on to explain how much it would mean to her if a treatment could be developed that would address loss of appetite specifically. “It would … change the game in terms of the impact that patients may have in dealing with their cancer.”

Breen shares excitedly that that’s just what she and her team are striving for as well. “We are hopeful that improving appetite and reversing some of these effects tied to fatigue and whatnot would then have these downstream benefits to improving participation in your cancer treatment.” 

The pair also agree that there is still a clear lack of awareness about cachexia — both in the general population and in the medical community — and that this is something they’d like to see change.

As the conversation comes to a close, Breen says that she looks forward to sharing Rochelle’s story with her team. For her and for them, it will be “a constant reminder to keep working hard, even on those days when things are not going right or it just seems so far away,” she says. “And that what we’re doing really matters, and people are waiting.”

We regret to inform our readers that since the publication of this article, Rochelle has passed away. While Rochelle is no longer with us, the impact she made by raising awareness of cachexia remains significant. Pfizer and Studio/B offer our condolences to her family, friends, and all those who were touched by her life and work. This update is a tribute to her memory and the legacy she leaves behind.