I almost died 19 years ago. After an uneasy year during which my weight plummeted, as I became more and more tired, anemic and short of breath, I became concerned that I might have TB and asked my doctor for a chest x-ray. Fortunately, he humored that request: the x-ray disclosed a tumor crushing one of my lungs and, in the fall of 1996, I was diagnosed with an aggressive form of non-Hodgkin lymphoma (NHL). One of the first things I did following my diagnosis was to get on the Internet to see what I could learn about my prognosis. I was in poor shape by then, with a tumor the size of a football, and the statistics I turned up were grim. It looked like my luck had pretty much run out.

What I didn’t know was that lymphoma therapy was about to undergo a sea change leading to dramatic improvements in patient survival. This transformation of lymphoma treatment involved the adoption of a new kind of therapy, the monoclonal antibody Rituxan. At the time of my diagnosis, clinical trials had already begun to show that Rituxan, which specifically recognizes and targets B cells — the cells that give rise to B-cell lymphomas &mdash; was effective against slowly progressing forms of lymphoma. When given as a solo agent, Rituxan did not appear to be very effective against aggressive lymphomas (like mine); however, I stumbled into a trial that combined Rituxan with standard chemotherapy to treat people with aggressive disease.

My luck had turned: the results of the clinical trials involving Rituxan were astonishing and, in 1997, Rituxan became the first monoclonal antibody approved by the FDA to treat cancer. Initially approved to treat certain types of B-cell lymphoma only after the disease had relapsed following standard chemotherapy, or failed to respond to it, Rituxan is now included in the therapy of most people with B-cell lymphomas (about 85% of NHL in the United States).

Like 1997, 2015 was an exciting year for people with lymphoma: the American Society of Clinical Oncology (ASCO) named the “transformation of treatment for chronic lymphocytic leukemia” as the “Cancer Advance of the Year.” Two of these transformative therapies involve the use of monoclonal antibodies (combined with chemotherapy). Like Rituxan, the monoclonal antibodies Gazyva and Arzerra can act as immunotherapies to recruit your own immune system to destroy the malignant cells (independent of any direct effects they may have on the targeted cells). Both Gazyva and Arzerra target CD20, the same B cell protein that Rituxan recognizes, but they have been tweaked to modify the ways in which they interact with the immune system and the malignant cells.

The other two transformative therapies, Imbruvica and Zydelig, are drugs. They differ from classical forms of chemotherapy in being more selectively targeted against the malignant cells. The development of Imbruvica and Zydelig as targeted therapies built upon years of research that provided detailed insight into the intracellular signals that enable B cells to survive and proliferate and the identification of specific proteins whose function could be inhibited to block those signals.

As our understanding of immunology — and lymphoma cell biology &mdash; continues to grow, we can look forward to the development of ever more selective, ever more effective lymphoma therapies in 2016 and the years to come.

Articles

Feature

Elizabeth M. Adler, author of "Living with Lymphoma: A Patient's Guide" talks about her diagnosis and exciting new developments in lymphoma therapies.

Book Corner: Author of "Living With Lymphoma" Shares Her Story

A cancer diagnosis and subsequent treatment can impact many areas of life —physically, emotionally, psychologically and cognitively. But one of the most commonly affected areas of life impacted by disease and treatment &mdash; sexual health and intimacy &mdash; is often underestimated, according to world-renowned sexual medicine gynecologist and survivorship medicine expert Michael Krychman. To gain further insight on sexual intimacy in cancer survivorship, CURE magazine spoke with Krychman, executive director, The Southern California Center for Sexual Health and Survivorship, about the impact of cancer on sexual health, discussing the issues during clinical visits and simple solutions for optimal quality of life.

Should issues with intimacy and sexual health be anticipated with a cancer diagnosis?

Krychman: The vast majority of people diagnosed with cancer have issues with sexual intimacy at some point. The extent to which they’re impacted really depends on a lot of variables — type of cancer, the patient’s age, the grade and the treatment.

Clearly, if someone has early-stage cancer and is able to be treated in a less aggressive way, it may still have an impact on a variety of things, but not to the extent as it would for someone who is aggressively treated with chemotherapy, radiation or surgery. Cancer does change how you think about yourself, look at yourself and feel about yourself as a sexual person. 

What sexual health effects can be associated with cancer diagnosis and treatment?

There are certainly a lot of things that are quite similar between both men and women, and I would say that they’re broken down into different classes. There are direct and indirect effects. 

Direct effects from chemotherapy, radiation or surgery can include pain, fatigue, and issues with desire, arousal and achieving orgasms. Women can experience vaginal dryness and loss of sensation, which can easily lead to feeling a loss of femininity. Procedures resulting in scarring can also alter the patient’s view of themselves as a sexual person  

Indirect effects are results of treatment that negatively impact sexual health, including stress, financial concerns, difficulty finding comfort and losing strength. If you have radiation and can’t even put your arm around your partner, it may become a big issue. It affects a variety of different things, and it impacts the whole relationship.

For patients, is the psychological or physical aspect more impactful on sexual health?

I think that it’s a dual issue. It’s a dual process, and it really depends on the person — every person is different. In terms of perception, the disease changes the way that people view themselves as sexual beings, in particular, and this causes sexual self-esteem issues.

It’s estimated that for breast cancer, anywhere between 50 percent and 100 percent of people have issues and that’s really related to the fact that people can be diagnosed at a variety of different stages and grades.

For clinicians, it’s a balance. You can’t treat a problem if you don’t know that one exists, and I think that it’s important that you talk about the issue. Clinicians need to create a comfortable environment. They don’t need to be experts, but they need to make themselves available for partial assessments and be able to refer patients to specialized clinics. Silence is the biggest deterrence. 

Are patients typically apprehensive to talk with their providers about sexual health and intimacy?

I think that patients want to talk about it, but they don’t know how and they have their own hang-ups. Why do they have their own hang-ups? I think it’s because they feel like they have a laundry list of things to discuss and there’s only a certain amount of time to talk to their doctor. They also don’t want to embarrass their clinician.

Then there is this “conspiracy of silence.” Patients feel that if sexual health were important, their health care provider would raise the topic during the visit. At the same time, the health care provider feels that if it were important to the patient, the patient would bring it up. So, either side is waiting for the other to talk about it first and, ultimately, nobody brings it up.

Patients often think that they’re being selfish and should just be thankful they are alive, but it’s not about being selfish — it’s about quality of life.

Are there gender discrepancies in discussing sexual health in cancer survivorship?

Both men and women are very uncomfortable talking about this issue. And believe it or not, men speak up more often because it’s much more acceptable for men to be sexualized in our society. Every day on television, we see ads for Viagra, Cialis and Levitra; presidential candidates talking about erections, famous athletes talking about testosterone — for men, it is very common to have that discussion. Women, however, are not allowed to be sexual in our society, so this is an issue.

How can nurses and health care providers ease patients into conversations about sexual health issues?

I think that breaking the silence is the most important thing. Again, you can’t treat a problem if you don’t know that one exists. Talking with patients about sexual health and intimacy in survivorship decreases isolation, normalizes the problem, and lets them know that they’re not crazy. 

Sometimes, it’s a challenge for providers. Clinicians can feel inadequate about their knowledge of treatment, but it’s important to know that there are a lot of simple solutions. There are hormone therapies, non-hormonal moisturizers and lubricants, herbal supplements and vaginal dilators. It’s also important for providers to be aware of the many facilities and experts that focus on sexual health and reclaiming sexual intimacy in order to refer patients in need.

What is your overarching message to survivors who feel that they may never regain a normal sex life?

My message is one of hope. There are simple solutions, and the best predictor of how you will do after is how you did before. Not everyone is going to be forthcoming and able to help you, but it’s important to recognize that there are solutions: sexual health is important for survivorship, and you have to advocate for your own health.

My philosophy is that sexual health is general health. There is emerging data showing that regular sex, ejaculations and orgasms, may lead to lower grades of chronic disease and decrease chronic illness. It’s also known that sex can decrease the risk of cardiovascular disease and increase immunity, and other studies have linked regular sex to lower rates of prostate and breast cancer.

I think that the power of sexual intimacy — the ability to change your hormones, improve emotional closeness, boost your immunity &mdash; is existential. We need to make sure that we don’t underestimate what we’re doing in terms of sexual health in cancer survivorship.

A cancer diagnosis often takes a hit on patients' sexual health. Michael Krychman, executive director of The Southern California Center for Sexual Health and Survivorship, talks about the impact cancer has on one's sex life, as well as tips to help.

Sexual Health in Cancer Survivorship

Wendy Harpham and her son, Will PHOTO BY JARED REY

Wendy Harpham answers the door of her Dallas home with her "morning energy,” that time of day when she is at her best and not yet at the mercy of cognitive and fatigue issues, the result of nine separate courses of cancer treatment. These early hours find her at the computer where she writes about the latest cancer news, trying to put it in context and nourishing hope among the many followers of her columns, blogs and Facebook page where she communicates with other cancer survivors seeking her help.

Harpham is far from the first person to survive cancer, nor is she the first to write about it. But her medical background and 25-year experience with survival offer an unparalleled breadth and depth of knowledge and understanding to both the oncology and survivor community, the latter now 14 million strong and growing steadily. And she remains passionate and steadfast about sharing her message, despite limitations from late effects of her treatment. “I think and talk and write about survivorship all the time, but I don’t think of myself. I tell my personal story for legitimacy and to share insights, but I don’t want my readers or attendees to look at me — I want them to look to me.”

In 1990, Dr. Wendy Harpham, 36, and her husband Ted, a college professor, were parenting their three children: 1-year-old Will, 3-year-old Jessie and 5-year-old Becky. In November, she experienced severe pain in her groin that she learned was caused by a lymphoma tumor pressing on a nerve. More staging information for her disease determined it was stage 3, meaning the cancer had spread. Harpham says the textbooks described “inevitable recurrence” with successively shorter remissions leading to death; the median life expectancy was about seven years. 

“During my initial chemotherapy, I wrote a pamphlet for my reception room, which grew into my first book, Diagnosis Cancer,” she says. Harpham’s plan to return to her practice one month after completing chemotherapy was changed when bronchitis and colitis kept her home another three months, making her recovery 10 months. 

“I was blindsided by the psychologic stress of recovery and no one was talking about what happens after cancer then, so I felt compelled to write After Cancer while home recovering.”

The word compelled is heard frequently in conversation with Harpham. “The book was something I had to do. But I had intended for that to be it. I had to be a doctor, and the writing was until I could get back to being a doctor.” 

Her first recurrence was the next year. She and Ted had agreed that she would continue her medical practice unless she recurred. After closing her practice, she spent some time helping in another doctor’s office until she recurred again. She still recalls the date when she saw her last patient and began the transition from doctor to writer: May 31, 1993.

Her second recurrence dropped her life expectancy to two years. It also took her to a no man’s land where there were no longer protocols for treatment; she had moved beyond the existing research. Each time the cancer returned, she and Ted would meet at the kitchen table and take the research they had amassed to create a list of pros and cons, a family process that would eventually include the children as their ages allowed an understanding of their mother’s unique standing in the world of mothers.

While her physician self was used to researching for her patients, she now expanded her commitment to hundreds of thousands of cancer survivors. 

In these family meetings Wendy brought her physician’s discernment and Ted brought his academic training. It was a time when lymphoma was being researched and new drugs were finally appearing for what had been a deadly cancer.

Perhaps the best choice the couple made was the decision to take part in a phase 1 clinical trial at Stanford Comprehensive Cancer Center in California for what was then a new drug called IDEC C2B8. Years later the drug would be called Rituxan (rituximab). 

Both Harphams understood that phase 1 trials are designed not for a cure, but to test a new drug or treatment in a small group of people for the first time to evaluate its safety, determine a safe dosage range and identify side effects.

It would require that she travel to Stanford on a regular basis as one of only 15 in the trial. What no one expected was that the phase 1 trial would put her into a partial remission. It didn’t last, but the drug provided hope that there would be other options. She responded so well that she would take part in continuing trials for the drug, which was approved in 1997. Her last recurrence and treatment with a Rituxan cocktail was in November 2007 — she has been in remission since.

To understand the reach of Harpham’s journey is to look at the topics she has explored for her audiences, medical and survivor, in columns and speeches: recurrence, late effects, joy, pain, grief, parenting and a four-part series on uncertainty and hope. She once described it as “Dr. Harpham learning from patient Wendy” and then relaying insights and advice to those who need it — new patients who are dealing with cancer. It was about uncovering the realities of survivorship by peeling back the layers of an onion, each one hiding the next, and when the insight came, dealing with the urgency to get it out to her public.

“As soon as I understood something, I wanted to share it as quickly as possible,” she says. “I didn’t want to wait for a book. I would send a manuscript to someone who needed it. As soon as there was an insight, I would say, ‘That’s something that could help.’ I wanted to give it to everyone right away.”

The result has been seven books in addition to her columns for Oncology Times. After writing the first two books during diagnosis, Diagnosis Cancer and After Cancer, Harpham wrote When a Parent Has Cancer, which came with a small book she co-wrote with her daughter Becky called Becky and the Worry Cup. The Hope Tree came next and then Happiness in a Storm with her roadmap on how to find joy and happiness in the midst of the pain and uncertainty of cancer. Her last book, Only Ten Seconds to Care was to help clinicians find compassion and joy in patient care.

For Harpham, the key to survivorship is living the best life she can every day by prioritizing how she will spend her energy. Her books and columns reinforce this, as does her daily life as she has accepted that her ability to function has changed — an understanding that will resonate for many in the cancer community as survivors have continued to live longer. For Harpham, the fatigue and cognitive issues began after her third recurrence. Today, she lovingly refers to herself as a “Lexus with a two-gallon tank.”

“I am really good when I am ‘on’ — I am great. And it is hard when I don’t function well, but I have been fairly good at drawing boundaries. When I push myself, I pay the price.”

 The challenges of late effects and a compelling mission have caused Harpham to plan her day down to her last bit of energy, and to know the result if she doesn’t listen to her body.

“I feel an obligation to my survivorship,” she says. “And I love writing. I push myself as hard as I can every single day. I would feel better physically if I didn’t.”

For example, with her doctor’s approval, she stopped the pain medication that kept the nerve pain from her original diagnosis under control because it affected her ability to think. “These are tradeoffs I am willing to make, and I know I won’t feel well in the afternoon because I pushed myself.”

Harpham says her discussions with her oncologist revolve around her desire to keep writing until she can’t.

Harpham has written extensively on family issues and cancer as she and Ted have raised their children in the midst of cancer survivorship. The result, she says, is family that doesn’t play games and one that has the capability to discuss very difficult issues.

“We have developed ways of communicating that allow us to talk about anything, and it’s not just about the rough times. It’s about sharing the joy and everything that is family.”

Today, the Harpham children are grown and on their own paths but securely connected to the thread that Harpham says connects them. Becky, a marketing director, and her husband are expecting the first Harpham family grandchild. They bought a house four blocks from her parents, and Harpham has the joy of seeing them regularly. Jessie is in the final stages of her medical residency out of state and will follow her mother’s footsteps into internal medicine with a focus on geriatrics.

Living with their mother’s illness and a continued understanding that she could be taken from them has given each a compassion and depth seldom seen in young adults.

Will, a fine artist and high school art teacher, has spent what he calls his whole life with cancer, and, on reflection, he says that while cancer is never a good thing, it has brought many good things into his life, including a closeness that most families don’t have, and how he cares for people, both those who are family and those who aren’t.

He also feels his parents did it right by including them in the discussions and never trying to deny the reality of their mother’s condition. He recalls how he and his sisters played with his mother’s scarves when he was 5 and knowing she had all the scarves because her hair fell out.

“I knew about white blood cells before I could spell the months,” he says. As he got older, Will says he remembers a few times of sadness when he accepted that his mother could die. “I remember being at camp, and we had to bring something relevant to our life that helped tell our story. I brought my mom’s book because at that age, 10 or 12, it was really important that my mom was around.”

It wasn’t the content of the book, Will says, it was a symbol that she was still here. Growing up with cancer was made easier, Will says, by sisters who were and are available for support. And, he adds, he had a father who was in it for the long haul.

“Once, we took mom to the emergency room at 5 a.m. when her pain got really bad. It wasn’t a question about what we needed to do, and we weren’t freaking out, it was just natural. Then we went to Whataburger because nothing else was open. It was a real bonding moment with my dad.”

Will says he doesn’t remember the gifts his parents gave him, but he remembers that moment with his dad. Today he lives with the same philosophy as his mother.

Harpham says healthy survivorship is to find how to make life the best it can be, physically, emotionally, spiritually, and knowing what choices you have so you can prioritize where you will spend your time and energy. Happiness is not automatic, she adds, saying you have to create the environment for happiness to occur.

For Will, it’s simple: “Who knows what the future holds,” he says. “But I have her today.”

Living Well on Borrowed Time: A Voice for Long-Term Cancer Survivors

I CONTINUE TO BE IMPRESSED and heartened by the grace and resilience of individuals who have survived cancer, and perhaps no one exemplifies this better than Wendy Harpham, the subject of our 

 cover profile this month. Harpham, a doctor herself, was a young mother of three when she was first diagnosed with stage 3 lymphoma. In the 25 years since, she has had multiple recurrences, but thankfully has been in remission since 2007.

When she began her initial cancer treatments in 1990, Harpham was troubled by the then dearth of good, practical information for patients and survivors. She resolved to change that and began to share her insights on joy, pain, grief and parenting — to name only a few &mdash; through speeches, books, blogs and her website. This outreach touches not only survivors, but also her physician peers to help them better understand their oncology patients’ needs and worries. It’s a role she has aptly described as, “Dr. Harpham learning from patient Wendy.”

 magazine advisory board, Harpham draws strength from this work, as she lives the best life she can every day by prioritizing how she will spend her energy. She reassures survivors that it’s okay to acknowledge that, due to the late effects of treatment, some ability to function may change, but healthy survivorship means finding how to make life the best it can be, physically, emotionally and spiritually.

I’m sure that Harpham would wholeheartedly agree that survivors should not feel that they have to sacrifice their sexual health to a diagnosis of cancer. In 

, we also talk with Michael Krychman, a world-renowned sexual medicine gynecologist and expert in survivorship medicine, who stresses that although the majority of people diagnosed with cancer have issues with sexual intimacy at some point, they should not hesitate to break the “conspiracy of silence” and share their concerns with their health care providers. There are solutions.

We hope you will find inspiration in the first-person stories and expert insights featured in 

, and please do not hesitate to reach out with your ideas and suggestions. You can contact us at 

 and also learn more about how you can share your cancer story through words or artwork.

From the Chairman

I CONTINUE TO BE IMPRESSED and heartened by the grace and resilience of individuals who have survived cancer, and perhaps no one exemplifies this better than Wendy Harpham, the subject of our Heal cover profile this month.

Winter 2016 | Heal

Book Corner: Author of "Living With Lymphoma" Shares Her Story

Sexual Health in Cancer Survivorship

Living Well on Borrowed Time: A Voice for Long-Term Cancer Survivors

Paying It Forward: Inspiring Others Along the Survivor Journey

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