Rebecca Bernaski

Receiving a cancer diagnosis is itself often overwhelming for patients. Then, throw nutrition into the mix and patients who may not understand what getting good nutrition requires will overlook an area that is critical to their treatment.

Being well-nourished before, during and after treatment is important because it helps with healing, immune function, keeps energy levels up and maintains muscle mass and weight.

According to Colleen Doyle, M.S., R.D., managing director of nutrition and physical activity at the American Cancer Society, many patients with cancer have access to a registered dietician at larger cancer centers, but patients who are seen in outpatient cancer centers do not. “Those nutrition services need to be a critical, important part of that care team for somebody that’s undergoing cancer treatment,” says Doyle.

Accessibility is not the only challenge for patients seeking proper nutrition, there are also hurdles to overcome when it comes to the side effects of cancer treatment. These can vary from nausea to fatigue, and both can impact a patient’s ability to eat. For example, a patient could develop mouth sores that may make eating difficult or another patient might not feel like eating at all.

When Chef Ryan Callahan’s mother was diagnosed with breast cancer and undergoing treatment, she quickly developed mouth sores, a loss of appetite and a strong metallic taste.

“The chemotherapy to fight her breast cancer was killing her sensory cells, diminishing her ability to smell and drastically reducing the sensory ability on her tongue,” recalled Callahan. He swore he would do whatever it took to make food taste good for her again and it wasn’t long before he developed two cooking techniques that helped his mother: roundness of flavor and palate cleansing. He put those techniques into recipes that are featured in his how-to cookbook, “Cooking for Chemo ...and After!”

Callahan’s experience isn’t an isolated one — many patients with cancer undergoing treatment will encounter changing taste buds and appetites, as well as food intolerances.

In a survey of 1,203 patients with cancer from seven different medical centers conducted by the Cancer Nutrition Consortium (CNC), results showed that eight out of ten patients avoided some types of foods, with approximately 57 percent avoiding foods that they used to eat due to intolerance and 47 percent due to medical advice.

According to the CNC survey, foods that patients with cancer found the most appealing fell into five main categories: sweets like ice cream, soft and creamy foods like applesauce, comfort foods like soups, carbohydrate-heavy foods like macaroni and cheese, and meats, fish, fruits and vegetables.

 Experts advise that patients take notes of any changing eating habits or challenges while eating. In addition, if a patient notices they look thinner or that clothes are fitting differently — they should tell their health care team because those are all signs of poor nutrition.

“The most important thing is to communicate with family members and the medical team to avoid risk of reducing the efficacy of treatment,” Amanda Bontempo, M.S. R.D. C.D.N., said in a statement.

Sometimes the solution to better nutrition with cancer treatment can be as simple as thinking out of the box. For instance, changing the temperature of the food, preparing it in a different area to prevent smells that could trigger nausea or switching up the time of day in which you eat it could make a big difference.

Patience is also key, and that goes for patients and their caregivers. One day a patient might feel great and a specific food sounds really good, but by the time it’s ready, the urge has passed and they are no longer hungry. “Be as responsive as you can,” advised Doyle. “Don’t take it personally and be as supportive as possible.”

If eating solid foods doesn’t work, drinking may be a viable option. Liquids tend to be absorbed more quickly by the body versus solid food. This is due to components of whole foods, like fiber, that require more time to digest. Liquid nutritional supplements such as Nestle’s Boost® nutritional shakes or Hormel’s Vital Cuisine™ protein shakes could help for those who are unable to eat or just don’t feel like eating food.

"Most patients with cancer are too tired to make a meal, or even shop for it. Yet the importance of good, consistent nutrition can't be overstated," said Bruce Moskowitz, M.D., chairman of the CNC.

Both supplements, which are available to the public, can be quick and easy meals without sacrificing nutrition.

“I’m happy that we have an opportunity with some of these supplements that are out there to be able to provide some examples to patients who are undergoing treatment,” said Doyle. “So, when they leave, they get home and find out that it was really helpful to have a liquid supplement when they didn’t feel like eating.”

Doyle added, “There are just so many different needs depending on the individual, but also different cancer types. That’s why it’s critical to have nutrition expertise so that an individual can be assessed and evaluated, then have a specific plan that meets their needs based on their type of cancer, treatment and their response to that treatment.”

If you or a loved one has been diagnosed with cancer, the Academy of Nutrition and Dietetics website features a 

 that can provide listings of registered dietitians based on area of expertise or location.

Additional resources for cooking and nutrition during and after cancer treatment, including tips for caregivers, can be found online at the 

Articles

Resources are available to help patients with cancer better manage nutrition. 

Taking Control of Nutrition After a Cancer Diagnosis

Following the death of her husband in 2008 from stage 3 esophageal cancer, Mindy Mintz Mordecai was angry and frustrated. She believed her husband, and thousands more like him, might have never died had they been aware that reflux disease could cause cancer and understood the little-known symptoms of reflux disease. 

With the support of a board of directors made up of top physicians, business leaders and families that who been impacted by the disease, Mordecai founded the Esophageal Cancer Action Network (ECAN) in 2009.

ECAN’s mission is to save lives by making Americans aware that reflux disease can cause cancer, promoting early detection, supporting medical innovation to prevent, detect, treat and cure esophageal cancer and linking patients and families to compassionate support.

“Every 36 minutes, another American will die of esophageal cancer,” said Mordecai, whose daughters were just nine and twelve when their father died. “But this is a preventable disease, and by increasing awareness and promoting early intervention, we are saving lives.”

ECAN reports that the type of esophageal cancer caused by reflux disease has increased more than 600 percent since the mid-1970s. Among American men, esophageal cancer is the fastest increasing cancer diagnosis and the eighth cause of cancer death. Only one out of five diagnosed with this disease will survive five years. That’s because most cases of esophageal cancer are diagnosed at late stages when treatment is rarely effective.

About three million Americans currently have a condition known as Barrett’s Esophagus, the precursor to esophageal cancer, ECAN explains. But more than half of those patients are not aware they have the condition because Barrett’s Esophagus, like the early stages of esophageal cancer, causes no symptoms. That’s why the organization urges those with symptoms of reflux disease — like persistent heartburn, cough, sore throat, hoarse voice or choking upon lying down – to see their doctor so they can get checked. 

But most Americans don’t realize that reflux disease can cause cancer. A poll conducted in March 2017 for ECAN by Ipsos, one of the world's leading market research firms, found that 86 percent of Americans don’t know that reflux disease can cause esophageal cancer. It also found that less than half of Americans associate reflux with any symptoms besides heartburn.

“We believe it’s important for everyone to be able to recognize reflux symptoms because they are often the only timely warning patients will have that they are at risk for this deadly cancer,” said Mordecai.  Her husband frequently choked upon lying down at night but never realized he had reflux disease until a six-centimeter tumor in his esophagus kept him from swallowing.

ECAN hopes to put its message in the hands of many more Americans at risk for esophageal cancer when it files a Citizens Petition with the Food and Drug Administration in May. The petition will seek labels on over-the-counter reflux medications warning of the cancer risk posed by reflux and explaining that medication does not eliminate that risk.

The most common symptoms of esophageal cancer include trouble swallowing, weight loss and chest pain—like pressure. Other possible signs are hiccups, vomiting and bone pain. But by the time patients experience these symptoms, the cancer has usually progressed to a stage that is nearly impossible to cure. That’s why ECAN’s awareness message is so important. 

If patients catch their condition early, they have a dramatically improved chance of survival. In fact, patients diagnosed with Barrett’s Esophagus, the precursor to esophageal cancer, can usually be treated with new outpatient procedures and never go on to develop cancer. 

Esophageal cancer most often develops in men, and that risk increases with age, but women and younger people are at risk as well, especially if they have persistent reflux. Patients who once had heartburn that went away on its own or have a family history of esophageal cancer or Barrett’s Esophagus are also at increased risk.

 that helps patients understand their risks and prepares them to discuss the topic with their healthcare provider. The guide is free; download it online at 

Through ECAN’s efforts, April has been formally designated as Esophageal Cancer Awareness Month across the United States and is now recognized by groups, associations and companies around the world.

ECAN has even enlisted some star power to share its message. ECAN partnered with the estate of film icon Humphrey Bogart — whose life was cut short in 1957 by esophageal cancer &mdash; to launch Screenings for Screenings in 2013 at the First Annual Humphrey Bogart Film Festival in Key Largo, Florida. Every year at the Festival, before each film is screened, a movie trailer produced by ECAN featuring Bogart’s son, Stephen, encourages viewers who may be at risk to get checked for esophageal cancer. In 2015, Jeff Foxworthy starred in a short “you might be redneck if…” comical public service announcement for ECAN telling viewers that reflux disease is no laughing matter.

Over the last eight years, ECAN has sponsored and supported nearly 200 fundraising and awareness events from coast to coast, including comedy shows, galas, dance events, walks, runs, bike and motorcycle rides, golf tournaments, speaking events, even art shows.

“We are doing all we can to make awareness that reflux disease can cause cancer as well-known as the need to wear sunscreen when going outside,” said Mordecai, a former television journalist and lawyer.

ECAN is also dedicated to advocacy in support of medical research funding. ECAN successfully advocated with the National Cancer Institute to include esophageal cancer in its groundbreaking genome mapping project. The journal 

 published the important results of The Cancer Genome Atlas project in esophageal cancer in January 2017.

Currently based in Baltimore, ECAN is the only national non-profit advocacy organization dedicated to increasing awareness of the link between reflux and cancer.

Esophageal Cancer Action Network: Turning Tragedy Into a Life-Saving Mission

The physical and emotional side effects of a cancer diagnosis can sometimes be the most challenging to overcome. But integrative therapies such as yoga have proven to be beneficial for patients.

“Yoga has a dramatic effect on improvement in reducing insomnia, nausea, aches and pains, as well as increasing the tolerability of chemotherapy,” Andrew Pecora, M.D., chief innovations officer at the John Theurer Cancer Center in Hackensack, New Jersey, said in an interview. “This is all proven.”

Although many misconstrue yoga to be a form of religion, it is a 5,000-year-old system of postures and breathing techniques that originated in India. The practice aims to increase the quality and 

 of life by uniting the physical, mental and emotional.

A pilot study conducted by researchers from Wayne State University and Barnes-Jewish College examined the outcomes of yoga for survivors of lung cancer in varying stages of the disease. They found that yoga significantly improved mood, sleep efficiency and quality of life.

And those benefits extend to patients with other cancer diagnoses, too. Linda Bailey, who has triple-negative breast cancer, signed up for a Kula for Karma yoga class when it was offered at the Triple Negative Breast Cancer Foundation.

“As a patient with triple-negative breast cancer, I felt like I was dealt an additional burden and there was no one who quite understood my situation,” said Bailey. “The class provides a support group. I don’t mean that we all sit and talk about our situations, it’s just that we are all there, in a quiet, peaceful fight to adjust to our bodies and lives."

That inner peace was something Geri Topfer, founder and president of Kula for Karma, had to learn herself. “I dealt with a lot of social anxiety at the time,” she said. Then, a friend of hers suggested she take a yoga class. “I ended up doing every training imaginable,” said Topfer.

It wasn’t long before she was teaching yoga in a traditional studio setting, but there was still something missing.

“It wasn’t resonating with me, but I didn’t quite know what I was meant to do,” she recalled. Topfer realized her true calling was to bring yoga and its benefits to children and family services. Using her business background, she forged ahead and established the nonprofit organization.

Nearly 10 years later, Kula for Karma offers therapeutic yoga and meditation for patients with cancer, caregivers, veterans, senior citizens and many more groups. The organization works specifically with the medical community to create yoga and meditation programs that complement traditional treatment approaches.

“Yoga therapy is being recognized more and more,” said Topfer. “Our doctors, from the very beginning, are writing prescriptions for patients to take [one of our] classes.”

Based in the New York metropolitan area, the organization is leading the way in the integration of therapeutic yoga, meditation and stress management into mainstream medicine and health care. Classes are taught by specially trained volunteer instructors and thanks to corporate sponsors, partners and private contributions, classes are free to all participants. In addition, Kula for Karma’s classes are modified for all body types, conditions and levels.

“We have executive, medical and business advisory boards,” explained Topfer. “We consult with everyone for the best approach for different populations.” One of her goals is to make Kula for Karma the specialists in hospital-based programs for cardiac and oncology patients.

Participants of Kula for Karma’s classes also learn portable tools for managing stress, anxiety and post-traumatic stress. “We give you the tools that you need when you aren’t with your doctor, not with your therapist, not with your nurse, not with your hospice nurse,” said Topfer.

With a focus on growth and expansion, the organization recently launched a class for firefighters dealing with post-traumatic stress disorder and are looking to create similar programs for medical professionals within hospital settings.

Topfer acknowledged that while yoga may not be the cure, Kula for Karma is there to help patients manage their journey every step of the way.

“The disease is the disease,” Topfer said. “The only power that you have is what we can do in the day-to-day to really know what it looks like to take care of ourselves.”

For those interested in programming or funding, more information can be found here, 

Kula for Karma, a nonprofit organization, offers yoga programs designed to aid patients with cancer as well as medical professionals, first responders and others, manage stress and improve quality of life.

Being Present: Organization Offers Yoga for Patients With Cancer 

For patients with hematologic malignancies, promise lies in the immunotherapy technique of adoptive cell transfer (ACT). The building blocks of this therapy are T cells which are collected and then altered to produce chimeric antigen receptors or CARs. These CAR T cells are then infused into the patient to multiply, recognize cancer cells and kill those cancer cells that harbor the antigen.

Can you tell us about anti-CD19 CAR T cells?

, Jim Kochenderfer, M.D. and investigator from the National Cancer Institute in Bethesda, discussed anti-CD19 CAR-T cell gene therapy, results from recent trials and the potential for this therapy, including fully human anti-CD19 CAR T cells and the possibility of its effect in multiple myeloma or solid tumors.

Anti-CD19 CAR-T cells are a gene therapy approach to treating lymphoma and leukemia that started several years ago now. At the National Cancer Institute (NCI) we opened our first trial in 2009. Since that time we and other groups have continued to develop anti-CD19 CAR T cells as therapy for a variety of B-cell malignancies.

The main thrust of our research is using the patient’s own T cells as a treatment for lymphoma. Since 2009, we’ve treated at the NCI, on our first protocol, 43 patients with lymphoma and chronic lymphocytic leukemia. The general process we use is to have the patient come in and get an apheresis which gives us the peripheral blood mononuclear cells to take to the lab and then genetically engineer those cells to express an anti-CD19 chimeric antigen receptor (CAR). After the cells are collected, the patient comes in and gets some chemotherapy. The chemotherapy is given to enhance the activity of the CAR T cells.

What are some of the toxicities seen from this treatment?

Many investigators have found in mouse models and fairly strong evidence in humans that giving chemotherapy before these CAR T cells enhances the activity of the CAR T cells and increases the chances of remissions. Shortly after that they get their infusion of CAR T cells. After the infusion we require the patients to stay in the hospital for several days at the National Institutes of Health (NIH). It can be anywhere from eight days to 10 days in the hospital. It could be even longer if the patients have toxicity.

There’s a syndrome called cytokine release syndrome which is caused by cytokines being released from the T cells when they contact the lymphoma or leukemia and this causes most prominently fever, tachycardia and hypotension. It can also cause things like abnormalities of blood coagulation, abnormalities in liver tests and renal insufficiency, among other things. There are many other rarer toxicities that we see but those are the main cytokine release toxicities that we see.

What are some developments and advancements that researchers have enacted?

Another prominent toxicity that we’ve had to deal with is neurologic toxicity. We have patients who develop things like aphasia, ataxia, confusion; some patients even have gone into comas. So all this toxicity is certainly a major effort with our future researchers to try and reduce that. But it is certainly something we have to let everybody know about - that it is a high risk treatment. It’s not completely safe, it is very experimental and all of our results are very early.

 One of the things that we’ve done with our research over time is reduced the chemotherapy dose. We did this in an effort to reduce toxicity and to make the treatment easier to administer. We have reduced our chemotherapy conditioned regimen down to a very standard dose of cyclophosphamide, 300 mg/m

, for three days plus fludarabine, 30 mg/m

We treated 22 patients, all had advanced lymphoma. Nineteen patients had defuse large B-cell lymphoma. Two patients had follicular lymphoma and one patient had mantle cell lymphoma. The overall response rate was 73 percent with 55 percent complete remissions. Of the complete remissions we had 12 complete remissions. Eleven of those complete remissions are still ongoing at this time. The longest complete remission we have ongoing from that trial is 24 months. So we can see sustained remissions with this treatment.

Can you talk about the expansion of this CAR treatment?

Are there different concerns you have with a patient who get an autologous and an allogeneic transplant?

Also from this trial of low-dose chemotherapy followed by CAR T cells we saw some very interesting immunologic correlates. We found that interleukin-15 (IL-15) levels in the blood were very closely associated with response. Patients who had ended up with higher IL-15 levels in their blood had a much better chance of having a response to the therapy. CAR T cell levels in the blood also were higher in patients who had higher levels of IL-15 which is not too surprising because we know that IL-15 is an important cytokine for promoting the growth and survival of T cells. We were very happy with those results, in particular the fact that the responses were durable.

This CAR which is designated at the NCI FMC63-28Z has been commercially taken over and developed by Kite Pharma. Kite has a large multicenter trial that they’re working on that they’ve recruited over 100 patients. So we are very happy to see that our work is being expanded out to a much larger number of patients in multicenter trials at this time.

It’s a very different patient setting. Patients who have had allogeneic transplants have basically gone through every possible treatment that they could get. They’ve had all the standard therapies. Those have failed. So the patient had to undergo an allogeneic stem cell transplant. Then after that even the patients had progressive malignancy. These patients really have very, very few options.

As most people are aware, one of the standard therapies for progressive B-cell malignancies after allogeneic stem cell transplant is to do a donor lymphocyte infusion. In this treatment lymphocytes are collected from the original transplant donor and then infused into the patient with lymphoma to try to control the lymphoma.

Unfortunately, the donor lymphocyte infusions have inconsistent efficacy and have a lot of side effects. Most importantly graft-versus-host disease (GVHD). About one third of patients after donor lymphocyte infusions get acute GVHD. We decided to enhance donor lymphocyte infusions by genetically engineering the donor lymphocytes to express an anti-CD19 CAR. With the anti-CD19 CAR in the T cells, we felt we could more specifically target the T cells to the malignancy. We found that we had nine out of 20 patients who had an overall response: either partial remission or a complete remission.

 We had responses in acute lymphoid leukemia, diffuse large B-cell lymphoma, mantle cell lymphoma and follicular lymphoma. Out of the 20 patients, as I mentioned the overall response was nine out of 20, we have five patients out of that 20 who are in ongoing complete remissions or very good partial remissions that have been ongoing for at least 31 months.

We have patients anywhere from 48 to 31 months in progression-free survival despite the fact that they had a horrible prognosis from having progressive disease after allogeneic stem cell transplant. So we’re very happy with that result but obviously there’s room for improvement where we have 25 percent of the patients having the long-term progression-free survival but the other 75 percent not getting that result.

We have a new version of our allogeneic anti-CD19 CAR trial at the NCI that will be opening up for enrollment in April and we also have ongoing autologous anti-CD19 CAR-T cell studies. Our primary autologous anti-CD19 CAR study is a study of a fully human anti-CD19 CAR. Most anti-CD19 CAR studies to date have used CARs that have a significant amount of mouse protein in them. So our current trial at the NCI is a fully human anti-CD19 CAR.

We treated 12 patients in that study, nine patients have had a response so again it’s another successful study of CAR T cells, confirming our previous results with a different CAR that we can get responses in these patients. Out of the nine responses, four of those have been complete remissions. These results are very early obviously, but we’re just happy to see that our other CAR also works and we’re continuing that and continuing to enroll patients.

Is there a space for multiple myeloma in CAR T-cell therapies?

Another thing we have in the lymphoma field is a brand new trial of anti CD30 CAR T cells which is another fully human CAR. This trial just opened up so for patients that have CD19 negative lymphoma that is expressing CD30 which is often Hodgkin’s lymphoma or T-cell lymphomas we have a trial for them now too.

At the NCI, we have two CAR-T cell trials for multiple myeloma. This is a newer area that we’re getting into. We have CAR-T cells that target a protein called BCMA which is, “B-cell maturation antigen.” There is a trial that is a dose escalation. When we’ve reached the highest dose level of the trial we’ve had very good success with this trial as far as getting responses. We have six out of seven patients on the highest dose level who had a response. These responses are much earlier than our CD19 works that’s much less well developed.

Is there a possibility of this therapy expanding to the realm of solid tumors?

So far patients have had good responses. Many have been sustained but some of them are not sustained. Our longest sustained progression-free survival so far has been 66 weeks. We have right now three out of the seven patients who have ongoing progression-free survivals right now. Toxicities are similar to our anti CD19 work with fever, tachycardia, low blood pressure and patients going to the ICU at times. Again it’s a very experimental treatment. It’s very early and it is a dangerous treatment but it certainly has evidence of its efficacy and we’re very excited about improving this treatment also.

It’s possible. I don’t really work in solid tumors and I think solid tumors are going to be a lot harder to treat than hematologic malignancies just because finding good antigens to target is difficult for everything but I think it’s harder for solid tumors and hematologic malignancies. For CAR T cells the antigen that is targeted has to be expressed only on the malignant cells and not on the normal essential organs of the body because the CAR T cells will destroy whatever the antigen has expressed on so I think the key for solid tumors will be finding antigens that are not expressed on essential normal tissues.

Jim Kochenderfer, M.D., lends insight to the future of CAR T-cell therapy for hematologic malignancies.

Rebecca Bernaski

Taking Control of Nutrition After a Cancer Diagnosis

Esophageal Cancer Action Network: Turning Tragedy Into a Life-Saving Mission

Being Present: Organization Offers Yoga for Patients With Cancer

Looking Ahead: What's New In CAR T-Cell Therapy for Hematologic Malignancies

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