Mike Hennessy Sr., Chairman

IF THERE’S ONE THING we learned throughout the COVID-19 pandemic, it is the importance of the human connection, whether from a distance or even online. Now that things are slowly getting back to normal as more people become vaccinated, we welcome back the idea with open arms of in-person connections. But there’s still one population that needs more human connection: those with a rare cancer.

For patients in these smaller populations, it can be difficult to find and connect with fellow patients who have received a similar diagnosis and know the hard- ships that come with treatment. Many connect with others online, whether it be through social media or a blog, and some gravitate toward research, absorbing as much knowledge as possible to better understand the diagnosis.

Throughout this special issue of CURE®, the theme of connection is recurrent. Steve Kelley, who received a diagnosis of central nervous system lymphoma at
63 years old, had trouble finding anyone with the same diagnosis. His solution? He wrote a book, “Cancer R.I.P.: The Ultimate Fight,” and through it, he’s hoping to connect with others who might feel the same way. In our interview with Kelley, we take a deeper dive into his book as well as his positive outlook on life. 

We also spoke with Nicole Body, who was diagnosed with stage 3 undifferentiated pleomorphic sarcoma after doctors found a tumor during a surgery to remove her gallbladder. Today, she is living cancer free and spreading her story of faith and hope as a women’s pastor in Florida. Both Kelley and Body offer inspiration and examples of finding connection after receiving a rare cancer diagnosis.

Because all the cancers you’ll read about in this special issue of CURE® are rare, another theme within is information, or rather the lack thereof. We spoke with Arianne Missimer, who received a diagnosis of 

at 34 years old and explained how difficult it was to find information about this type of cancer.


Of the 1.9 million people who received a cancer diagnosis in 2020, less than 1% received a diagnosis of sarcoma. Although research is ongoing in this area,
clinical trials for rare cancers occur more slowly than for other cancer types because there simply aren’t as many patients to enroll. Another patient we spoke with, who received a lobular breast cancer diagnosis at age 32 and then also tested positive for a mutation in the CDH1 gene, enrolled herself in a clinical trial that focused on the best ways to screen for and treat the disease risks that come with this mutation. Through the trial, she was able to help increase the knowledge base around this rare subgroup of patients with the rare disease — proving how important participation is to advance treatments for rare cancers.

Also in this issue, we look into the development of 

treatments for patients with rare cancers

. Among these developments is a new tool that can more accurately predict overall survival to guide health care specialists in planning the most appropriate treatment regimen for a patient with cancer of unknown primary (an umbrella term used to classify a diverse group of metastatic cancers based on the absence of an identifiable primary tumor). For patients, this tool provides a wealth of knowledge and helps them better prepare as they plan their course of treatment with their doctors.

For more news on cancer updates, research and education, don’t forget to 

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Now that things are slowly getting back to normal as more people become vaccinated, we welcome back the idea with open arms of in-person connections. But there’s still one population that needs more human connection: those with a rare cancer.

The Power of Human Connection in Cancer

Spring is upon us. During this season of renewal, rebirth and reawakening, be sure you’re listening to your body and asking your doctor about any side effects or symptoms that you might be experiencing after cancer, no matter how off-limits you might feel they are.

A study from the Sidney Kimmel Cancer Center at Thomas Jefferson University in Philadelphia found that 87% of survivors of breast, pelvic, endometrial, prostate, bladder and rectal cancers experience challenges in their sexual desire and function after treatment.

So if sexual side effects are so common, then why aren’t they being talked about more? Many survivors who have sexual side effects after treatment feel too uncomfortable to share this information with their doctor, and some doctors may not know how to address it with their patients.

In this issue of Heal®, we explore this topic. We hear from two survivors — one man, one woman — about how cancer and treatment affected their sex lives. We also hear from doctors about why survivors might experience these side effects and how to treat them.

In addition, we hear from a survivor who decided to document her journey with stage 4 lymphoma on the social media platform TikTok, which gained her nearly 200,000 supporters and helped her find purpose.

Also in this issue: A penile cancer survivor discusses “scanxiety” — the fear that occurs in the weeks and days leading up to your next scan because you’re worried about cancer coming back. This very real fear can make you irritable and “irrational” (as he puts it) and make it very easy to lash out at loved ones.

Finally, celebrate the spring season with some new recipes, including a kale salad and a chickpea curry. No need to wonder, “What should I eat for dinner?” or “What can I make that’s healthy?” because these recipes are perfect options. And remember to save room for dessert! (Hint: It involves chocolate.)

As always, we hope you find this issue both informative and helpful. And who knows, it just might inspire you to share your story with us.

Many survivors who have sexual side effects after treatment feel too uncomfortable to share this information with their doctor, and some doctors may not know how to address it with their patients.

Talking About the Sexual Side Effects of Cancer

Recent headway in the study of targeted therapies has transformed how some cancer types are treated. For instance, the past several years, we have seen an influx of targeted therapies that have been shown to successfully treat patients with breast cancer, lung cancer and melanoma.

However, as one expert noted in a feature article in this special issue of CURE®, targeted therapies have not been as successful when used to treat colorectal cancer. But this expert also noted how researchers have learned from the past and are on the cusp of revolutionizing treatment for this patient population.

“Compared (with) other forms of cancer, results of targeted therapy agents have not been as impressive in colorectal cancer, but we have learned from many negative trials,” says Dr. Afsaneh Barzi, a gastrointestinal medical oncologist at City of Hope in Duarte, California. “With the new clinical trials, we are right on the cusp of seeing significant changes in outcomes for this population of patients.”

Also in this special issue, we explore a Food and Drug Administration priority review of Opdivo (nivolumab) plus chemotherapy in the treatment of patients with certain advanced gastrointestinal cancers and, if approved, what the combination therapy would offer this patient population.

“This was the first trial that showed that if you add the immunotherapy — Opdivo in this case — it actually improved survival,” says Dr. Michael Pishvaian, director of Gastrointestinal, Developmental Therapeutics and Clinical Research Programs at Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in the Washington, D.C., area. “Our goals when trying to treat patients who (have) incurable cancers — which unfortunately, these patients fall into that category — is to help them live longer ... and to do so in a way that maintains (as high a) quality of life as possible. This trial definitely showed that the addition of Opdivo (helped patients live longer).”

And in an article, CURE® contributor and pancreatic cancer survivor William Ramshaw recalls how pushing through treatment reminded him of his eight- week stint gutting it out in Navy boot camp. Using his experience, he offers guidance to others on how to get through those grueling treatments.

One such piece of advice that stood out was how going through cancer treatment is “harder than hard,” as Ramshaw puts it, but still doable. Ramshaw’s recommendation: Take it one day at a time, surround yourself with allies, don’t be afraid to ask questions and always seek out help when it is needed.

New clinical trials open doors for positive changes in treatment of colorectal cancer.

Advances in Targeted Therapies Promise Significant Change in Treatment of Colorectal Cancer

In March 2020, the United States was in the early stages of the COVID-19 pandemic. We shut down the entire country and ground the economy to a halt to slow the spread of the virus. Think back to March and how much uncertainty we were living under.

Nine months later, the FDA approved two COVID-19 vaccines under emergency authorization. Before New Year’s Day, millions of Americans had received the vaccine, including frontline physicians and health care providers and nursing home patients, our most vulnerable citizens.

Nine months. Take a moment to let that sink in.

There is another way — a more accurate and underappreciated way — to tell the story of the past nine months.It is a story of heroism, innovation and precise science, performed under unbelievable pressure.

Let’s not mince words: The U.S. and the world must appreciate the role of the pharmaceutical industry — the researchers and physicians — who are rescuing the world from COVID-19. It’s the medical breakthrough of our lifetime.

Since the discovery of COVID-19, here is what scientists have accomplished: They identified a novel virus, unlocked and sequenced its genetic code, created new therapies to save lives, and developed multiple safe and effective vaccines using messenger RNA technology, a technology hopefully applicable to future vaccine development.

The United States has two vaccines approved for emergency use, one from Pfizer/BioNTech and another from Moderna, and the AstraZeneca/Oxford vaccine has been approved for emergency use in the UK. In addition, there are 64 vaccines undergoing clinical trial at the moment, including 20 in phase 3 trials.

This was the fastest vaccine development program in history, and it’s not even close. Dr. David Pride, a microbiologist at the University of California, San Diego, estimates that vaccines typically take 10 to 15 years to develop. Until the COVID-19 pandemic, the fastest development timeline was four years, for the mumps vaccine.

The next step of the process — distribution of the vaccine — will be as challenging as the development phase, if not more so. worldwide are working overdrive to produce hundreds of millions of vaccine doses.

Less than a month after the Pfizer vaccine was approved, more than 15.4 million doses of vaccine have been distributed across the country, and more than 4.6 million people have received their first dose, according to CDC data. Many patients are already receiving their second dose.

Although 15.4 million doses are impressive, some expected 20 million doses. But that is moving the goal line, as six months ago many observers didn’t think a vaccine would be available until 2021.

Every day, more people will be vaccinated. After health care workers and our most vulnerable citizens, other frontline workers will be next. Teachers will be vaccinated so our children can return to school. And soon, all Americans will be able to receive the vaccine at their doctor’s office or at a CVS or Walgreens.

Remember, we accomplished this in nine months.

Let’s not mince words: The U.S. and the world must appreciate the role of the pharmaceutical industry — the researchers and physicians — who are rescuing the world from COVID-19.

Mike Hennessy Sr., Chairman

The Power of Human Connection in Cancer

Talking About the Sexual Side Effects of Cancer

Advances in Targeted Therapies Promise Significant Change in Treatment of Colorectal Cancer

How Pharmaceutical Innovation is Saving the World From a Pandemic

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