NOMAN IS AN ISLAND: RACE TO END HPV & PREVENT 5% OF CANCERS

Entitled ‘Taking Care of You: Managing Side Effects From Treatment For Anal Cancer’ on June 23, 2015 the HPV and Anal Cancer Foundation held its first ever online educational event for the anal cancer community. We heard from a panel of thrivers (our word for survivors) and experts who work with thrivers.

The thrivers discussed their personal experiences managing side effects from treatment for anal cancer including diet, bowel movements, sexual functioning, anxiety and more and how they have personally learned to manage them. Their firsthand experiences brought invaluable information to viewers and provided insight for others in the community. We thank them for their huge contribution to the ongoing story of anal cancer thrivers!

Expert Panelists

Our three panelists consisted of a physical therapist specializing in pelvic floor function, a dietitian who works with anal cancer thrivers, and the lead in a dive clinic where thrivers receive hyperbaric oxygen therapy. These three panelists discussed the side effects often experienced as a result of anal cancer treatment and how to manage them using various interventions. Here are their titles and institutions: Allison Romero, PT, DPT (Pelvic Health and Rehabilitation Center), Eric Hexdall, RN, ACHRN, Clinical Director, Duke Dive Medicine (Duke Center for Hyperbaric Medicine and Environmental Physiology), Melanie Cardoso, RD, CSO, CDN, Outpatient Clinical Dietitian (Memorial Sloan Kettering Cancer Center). They also provided helpful links (see below) for thrivers to access the interventions they discussed.

After the panelists finished their discussions, we opened up the event to a live Q&A where thrivers were able to ask the panelists questions via our Google + page and e-mail and receive responses in real time. The video will remain on our YouTube channel indefinitely.

We will hold more online events in the future and would like to hear from YOU about what topics and experts you would like included. Please share your thoughts by emailing us at info@analcancerfoundation.org.

We look forward to hearing from you!

*****

Important links mentioned in this video are as follows:

HPV Action

NOMAN is an Island: Race to End HPV

HPV and Anal Cancer Foundation Peer-to-Peer Support Program

Eat Right

Pelvic Health and Rehabilitation Center

International Pelvic Pain Society

Undersea and Hyperbaric Medical Society

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This is the first of a three-part series regarding the benefits of physical therapy after treatment for anal cancer. The Anal Cancer Foundation is thrilled to have licensed physical therapist Dr. Allison Palandrani lend her expertise on this subject matter.

See our latest update to this series which was posted August 26, 2020 on the blog.

Featured Contributor: Allison Palandrani, PT, DPT

At the pelvic rehabilitation center where I work as a licensed physical therapist, we treat a wide variety of patient populations. One population that we’re beginning to see more often is individuals diagnosed with and treated for anal cancer.

This population remains highly underserved when it comes to physical therapy (PT). That’s because many physicians and patients simply are not aware of the help that physical therapists, specifically pelvic floor physical therapists, can offer to people that have been through treatment for anal cancer.

Thus, the Anal Cancer Foundation invited me to write this blog, which gives an overview of how pelvic floor PT can help people who have undergone treatment for anal cancer.

Anal cancer is a malignancy that starts in the anus, the opening at the end of the rectum. The American Cancer Society estimates that 7,210 cases will be diagnosed in the U.S. in 2014.

Anal cancer is typically treated with combined chemoradiation therapy, and even in early diagnoses, treatment can often have serious and difficult side effects.

Patients who receive local radiation to their pelvis and anus, for example, may suffer from long-term fatigue, gastrointestinal discomfort, anal and vaginal canal stenosis, and sexual dysfunction. Fortunately, pelvic floor PT can help with these, as well as with the following, side effects:

• hip pain and/or pelvic pain;
• loss of hip and pelvis range of motion;
• surgical pain if there is a surgery;
• fatigue, which can be short-term or long-term;
• lymphedema, which is localized fluid retention due to a compromised lymphatic system;
• general musculoskeletal impairments, such as overall weakness, neuropathy or deconditioning as a result of lack of use;
• pelvic floor dysfunction, which includes, in addition to the above-mentioned issues, gas and fecal incontinence, urinary symptoms, such as hesitancy or a weak urine stream; and
• scar tissue due to radiation burns.

PT can Help

There is a role that physical therapy can play in the management of the above-mentioned side effects. While there is not much research literature yet regarding this issue, we’ve seen very good clinical evidence that indicates pelvic PT is worth the time and resources for patients. This is a good time to mention that while I am a licensed physical therapist, and treat a large number of people with these symptoms, it is necessary to speak with your physician before initiating any type of physical therapy treatment.

So exactly how can PT help?

Musculoskeletal pain.  For one thing, many patients experience musculoskeletal pain as a result of treatment, typically in the pelvic area. Even areas of the pelvis that haven’t been radiated can be affected due to radiation of nearby tissue; the pelvic floor can act as a veritable house of cards, where one problematic area can cause issues to adjacent areas. Thus, manual therapy techniques such as myofascial trigger point release, connective tissue manipulation, scar mobilization, and joint mobilization can treat the affected tissues.

Vaginal and anal stenosis. For pelvic floor dysfunction caused by stenosis of the anus and/or vagina, manual therapy can help to maintain the patency or openness of the canal. Patients with vaginal and/or anal canal stenosis may also need to be placed on a dilator program that ensures progress continues outside of treatment. A PT can help patients learn how to use dilators, and monitor their progress. This will be discussed in more detail in a future post.

Gas and/or fecal incontinence. Another pelvic floor-related issue that can occur as a result of cancer treatment, is gas and/or fecal incontinence. This is because radiation therapy can damage the integrity of pelvic floor tissues, which can in turn cause a functional weakness in the muscles that results in uncontrollable gas, or a loss of bowels. There may also be a situation where tissue such as the external anal sphincter, must be removed.

For its part, pelvic floor rehab can help to strengthen any affected muscles by using techniques such as biofeedback, patient education, and/or neuromuscular electrical stimulation. That said, although gas and fecal incontinence are dysfunctions that pelvic physical therapy can help to decrease, I should make it clear that we can’t always completely cure these issues.

Pelvic strength and mobility. When it comes to overall function, patients often feel that their body has significantly changed as a result of having endured incessant pain or fatigue. Many patients that I have treated feel as though they’ve lost mobility, strength, or their muscles have been deconditioned as a result of lack of use. As PTs, we can help to recondition patients by working to correct their posture, sitting position, gait and walking, and by treating any lower back or hip impairments with manual therapy, neuromuscular re-education, and patient-specific exercises.

1. Fatigue is a big issue for patients going through cancer treatment and there isevidence to support that PT in general is a great tool that can help combat chronic fatigue. A therapist can help patients pace out their daily activities, and whenever possible, help them to resume physical activity. When it comes to a body in motion, we want to place patients on a program that combines aerobic, strengthening, stretching, and balance activities.
2. A final point that I’d like to mention pertains to lymphedema caused by cancer treatment. If for instance, lymphedema occurs in the groin area, pelvic floor rehab can manually drain the lymphatic system, and decrease symptoms like pain and swelling.

For any patient who is considering pelvic floor rehab, it is recommended to speak to your doctor to receive clearance by your physician in order to start therapy. Additionally, like all other forms of therapy, it’s important to give PT a fair chance to make a difference. Meaning, this type of therapy requires at least a three to twelve month patient commitment.

Part 2 and Part 3 of the series are now available!

Allison received a bachelor’s degree in exercise science from Sonoma State University and a clinical doctorate in physical therapy from the University of Southern California. She is a physical therapist specializing in pelvic floor dysfunction and treatment at the Pelvic Health and Rehabilitation Center in San Francisco, CA.  Allison is an active member of the International Pelvic Pain Society and is involved with community outreach and education in the Bay Area. She has been specifically involved in treating issues related to treatment for anal cancer and was recently given the opportunity to speak at the Educational Forum for Anal Cancer Survivors at the University of California, San Francisco.

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The human papillomavirus (HPV) vaccine prevents cancer, but misunderstanding, stigma and confusion surrounding HPV and its related cancers continues to exist. This is leading to low immunization rates and the endangering of the next generation of boys and girls and the men and women they become. However, awareness is being raised through individuals like Speaker Melissa Mark-Viverito courageously announcing their battles with HPV and its related cancers.

“City Council speaker, Melissa Mark-Viverito, has shown great courage this week by sharing her HPV diagnosis. She confronted an outdated and harmful stigma surrounding this carcinogenic virus in the name of public health,” said Justine Almada, Co-Founder and Executive Director of The Anal Cancer Foundation. “HPV is a skin virus that nearly everyone is exposed to — and the number of men and women getting cancers from it increase every year. The tools we have today, particularly the HPV vaccine, are critical to ending for good the devastation caused by this virus. I only wish my mom — who died from an HPV-related cancer — had access to it when she was young. We all deserve the right to a healthier life, and the Speaker’s actions take a step towards that goal.”

HPV can be obsolete: HPV is the most common sexually transmitted infection (STI) in the US. According to the Centers for Disease and Control Prevention (CDC), 79 million people in the United States are infected with HPV at this time, and about 14 million people become newly infected each year. HPV is responsible for approximately 5% of all cancers globally including cervical, anal, vulvar, vaginal, penile and head and neck cancers. Although most people fight off HPV infections with the body’s natural defenses, over 31,500 people will be diagnosed with an HPV-related cancer this year in the US.

The U.S. President’s Cancer Panel has focused their annual report on Accelerating HPV Vaccine Uptake expressing that the “underuse of HPV vaccines a serious but correctable threat to progress against cancer.” At the same time, HPV-associated oral and anal cancers are increasing. Vaccines are available that protect against the most common cancer-causing strains of the virus, HPV-16 and HPV-18.

However, HPV vaccination rates are still staggeringly low. Looking specifically at New York, the New York State Comprehensive Cancer Control Plan notes that only 40% of girls 13-17 years old have completed the necessary three doses of the vaccine, and about 18% of boys 13-17 years old have received just the first dose in New York State.

In the US, both boys and girls are recommended to receive the vaccine at age 11-12, but uptake is dangerously low with only 37.6% of girls and 13.9% of boys age 13 to 17 receiving the full 3 doses of the vaccine in 2007-2013. The President’s Cancer Panel stated that “the Centers for Disease Control and Prevention (CDC) estimates that increasing HPV vaccination rates from current levels to 80 percent would prevent an additional 53,000 future cervical cancer cases in the United States among girls who now are 12 years old or younger over the course of their lifetimes. Thousands of cases of other HPV-associated cancers in the U.S. also likely would be prevented within the same timeframe. A growing proportion of these cancers—most notably, oropharyngeal cancers—will occur in males, who currently are vaccinated at very low rates.”

Michael Douglas and City Council speaker, Melissa Mark-Viverito, have bravely stood up and announced their personal battles with HPV. There is no medical treatment for HPV once it is contracted, but we can prevent it and end HPV. Standard screening protocols only exist for the prevention of cervical cancer.

Ms. Almada added, “We need to add HPV to the list of smallpox, polio and other prevented viruses, but this can only be done by immunizing our children – let’s hope the announcement makes a sustained change to the way we view HPV.”

Justine, Tristan and Camille Almada founded the Anal Cancer Foundation in July 2010, three months after their mother, Paulette Isabel Crowther, died of Stage IV HPV-related anal cancer.

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 Our second educational forum for anal cancer thrivers on May 13 in San Francisco was an unforgettable evening!  With the largest gathering of thrivers to date and individuals coming from as far as Texas and Oregon, the room was filled with anticipation and hope as the evening began.  Many came to learn from clinicians, while others attended to be in a room of peers and absorb the knowledge of their shared experiences.

Dr. Joel Palefsky, a co-organizer of the event, opened the forum with a welcome to attendees and a discussion of the upcoming AnCHOR study which seeks to establish treatment options for people with anal pre-cancer.  He introduced Foundation Executive Director, Justine Almada, who shared her family’s experience with anal cancer and spoke of the isolation that often comes with an anal cancer diagnosis.  To end this for the people in the room, Almada asked attendees to introduce themselves to the individuals sitting next to them.

For many, it was the first time they had met another anal cancer thriver.

Next the audience heard from four clinicians: Dr. Albert Chang – Radiation Oncologist, Dr. Katherine Van Loon – Medical Oncologist, Dr. Allison Palandrani – Pelvic Health Provider, and Dr. Michael Berry – Provider at the Anal Neoplasia Clinic.  The clinician presentations can be viewed on film here. (If you are looking for more educational information, please also see the presentations from our event at Memorial Sloan Kettering.)

Three thriver panelists shared their personal experiences with anal cancer.  Their words echoed true for many in the room.   After all panelists spoke, the formal discussion ended with questions from the audience. T

Our community is filled with strong, passionate and determined individuals who continue to amaze us.  We thank them for sharing their personal journeys and allowing us the opportunity to learn from them.

At the end of the evening, there was an opportunity for individuals to meet and mingle.  This was an emotional time for many.  Friendships were forged and experiences shared.

Thank you to everyone who helped to make this evening memorable!

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It is with great pleasure that we share with you a new exciting joint venture that we hope lays the groundwork for a cure for HPV-positive cancers.

The Anal Cancer Foundation  joined with Stand Up To Cancer (SU2C), the Farrah Fawcett Foundation (FFF), and the American Association for Cancer Research (AACR), to announce the formation of a research team dedicated to HPV-related cancers at the AACR Annual Meeting 2014, held April 5-9 in San Diego, California.

The $1.2 million SU2C-FFF Human Papillomavirus (HPV) Translational Research Team Grant will support researchers at Dana-Farber Cancer Institute in Boston, Massachusetts for three years. Ellis L. Reinherz, M.D., chief of the Laboratory of Immunobiology and co-director of the Cancer Vaccine Center at Dana-Farber and Robert I. Haddad, M.D., disease center leader for head and neck oncology at Dana-Farber, will lead the research project titled “Therapeutic CD8 vaccines against conserved E7 HPV epitopes identified by MS.”

The study will focus on developing immunotherapy treatments for patients with recurrent HPV-related cancers, including anal, cervical, and head and neck cancers. The goal of immunotherapy treatment is to use the bodies defenses to find and destroy cancerous cells without damaging healthy cells. HPV, which is a virus, causes at least six different cancers. Each year in the US, over 30,000 people are diagnosed with an HPV-related cancer. HPV-positive oral and anal cancers are on the rise.

Project Details

“Our project involves the development of vaccines that stimulate specific immune cells to attack HPV-driven cancer cells,” said Reinherz. “While current vaccines effectively prevent HPV infection from taking place in unexposed individuals, they are unable to offer protection to those already exposed subjects either at risk of developing a tumor or with an existing cancer. Our vaccine is uniquely designed to attack the cancers even after tumor formation and, importantly, without causing collateral damage to normal tissues. The strategy is to 1) identify the tumor target, 2) activate specific immune cells, and 3) deploy these effectors at the tumor site for selective destruction of the cancer.”

The researchers have developed a highly sensitive ion physics method to find “tags,” called epitopes, on cancer cells that are entirely specific for the cancer and hence not found on the normal cells in the body. These tags can signal to receptors on a specific type of immune cell, called a cytolytic T lymphocyte (CTL), to attack and kill the cancer once CTLs are programmed by vaccination to do so in the patient’s body. One CTL target that the team has already identified has been incorporated into a new therapeutic vaccine that will be tested on patients in a clinical trial as part of this research grant. The team will also use their epitope-identification technology to find other epitopes for the development of additional immunotherapeutic agents.

Finally, they will identify the T cell receptors on CTL that provide the best immune response in order to re-engineer the patients’ own immune cells in the laboratory for use as a cancer treatment. “We are focusing in particular on patients with an HPV-driven cancer who have relapsed after their initial therapy,” said Haddad. “These patients have few therapeutic options today, and we aim to provide a new and targeted approach to improving outcomes for them. Our expectation is that a therapeutic vaccine would also be less toxic than conventional chemotherapy currently being used in clinical practice.”

The project is expected to begin July 2014.

Research Team Selection Information

The proposals for the SU2C-Farrah Fawcett Foundation Human Papillomavirus (HPV) Translational Research Team Grant were reviewed by a panel of renowned scientists. The committee was co-chaired by Waun Ki Hong, M.D., FACP, D.M.Sc. (hon.), and Lawrence D. Piro, M.D. Dr. Hong is division head and professor at The University of Texas MD Anderson Cancer Center, an American Cancer Society professor, and a Samsung distinguished university chair in cancer medicine. Dr. Piro is the president and chief executive officer of The Angeles Clinic and Research Institute and professor of clinical medicine at the Keck School of Medicine, University of Southern California. The process began with a call for ideas by the AACR in September 2013, and eight finalists were invited to submit full proposals. Of the finalists, the committee recommended funding of the Reinherz and Haddad team. The AACR is responsible for administering the grant and provides ongoing scientific oversight to ensure that progress is being made.

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The NOMAN Campaign

NOMAN is an Island: Race to End HPV and Prevent 5% of Cancers raises awareness about HPV and vaccination through extreme sporting events. This year we have two new exciting NOMAN endurance events that will help eradicate the HPV carcinogen: one is a 30-40 day rowing race in the Pacific Ocean and the second is a bicycle race through the Italian mountains. 

The NOMEN need your support! Please donate to this year’s NOMEN now!

The Great Pacific Race

Our latest adventurers are training to compete against 14 other teams in the Great Pacific Race. This is the first ocean rowing competition between Monterey Bay, California and Honolulu, Hawaii.

Chris Blacketer, Jack Carter, Mark Gleeson, and Nick Kempster, 23-year-old alumni from Exeter University are our brave NOMEN taking on this feat.

These NOMEN will row the Pacific on the boat Isabel, named after our mother’s middle name. The journey is expected to take 30-40 days and they will face extreme weather, sharks, and 30-foot swells.

They will attempt to set a world record for first four-man crew to row across the Pacific. The teams take off on June 7, 2014.

Catch their training video here.

Cosaveli Giro

NOMEN will compete in the Cosaveli Giro bike race through the Italian Dolomites between June 6 and 9, 2014.

Team Members already include:

Tristan Almada, NOMAN Campaign co-founder and second-year NOMAN

Laurant Baud

Ian Field, National Cyclocross Champion

James Hamm

Matthew Hill

Mark Hunter, a UK Olympian Gold Medalist and second-year NOMAN

We are currently seeking additional members to join our team!

The 2015 Mediterranean Challenge 

Last year 10 NOMEN including Tristan Almada and Mark Hunter rowed for 3 days across the Mediterranean from Barcelona to Ibiza. In 2015 we will repeat the Mediterranean challenge and are seeking NOMEN! Please sign up here.

NOMEN Athletes Save Lives

Last year we surpassed our fundraising goal of $1 million. This year we have set a goal of $600,000.

These efforts funded our joint $1.2 million HPV research grant with Stand Up to Cancer and the Farrah Fawcett Foundation.

The NOMAN campaign also aims to raise awareness about male vaccination in the UK. Sign our HPVAction petition to ask the government to include males in the vaccination program here.

To follow our NOMEN, to become a NOMAN or to donate visit the NOMAN Campaign site!

Please follow the campaign on facebook and twitter.

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Today, April 5th, we honor our mother on the four-year anniversary of her death. We lost Paulette Isabel Crowther because there was limited advancement in preventing and treating anal cancer and HPV-related diseases.

Our mother’s strength, passion and perseverance continue to be a driving force behind all that we do. Since her passing, we have made it our mission to develop the infrastructure for the disease and improve outcomes.

This week, we will be celebrating her legacy and life in two exciting events. First we are announcing a grant to lay the groundwork for future HPV-related cancer therapy. We are also holding a NOMAN event to promote HPV vaccination.

Supporting Research

Today we are traveling to the American Association for Cancer Research (AACR) conference in San Diego, California. On Monday, April 7th we will announce the recipient of our $1.2 million HPV-translational research grant, which we co-funded with Stand Up to Cancer and the Farrah Fawcett Foundation. We will be announcing details of the grant on our website and social media this week.

Raising Awareness and Promoting Vaccination

This weekend we will also work to educate people about HPV and vaccination through a NOMAN event. The NOMAN Campaign: Race to End HPV and Prevent 5% of Cancers raises awareness about HPV and vaccination through extreme sporting events.

Our latest adventurers, Jack, Nick, Chris and Mark, 24-year-old alumni from Exeter University, are training to compete against 14 other teams in the Great Pacific Race, the first ocean rowing competition between California and Hawaii.

To get ready for their Pacific journey, the 2014 NOMEN will be at the 160th legendary boat race between Oxford and Cambridge in London on the River Thames tomorrow, Sunday, April 6th.

HPV causes at least 6 types of cancers and incidence is growing. Come join us at the boat race to spread the word about how you can protect yourself with the HPV vaccine. Please visit the NOMEN at the race’s start in Putney at the HSBC rowing club starting at 1:30.

These NOMEN will row the Pacific on the boat Isabel, named after our mother’s middle name. The journey is expected to take 30-40 days and they will face sharks, extreme weather, and 30-foot swells. They will attempt to set a world record for first four-man crew to row across the Pacific.

The NOMEN will also embark on a new type of expedition this summer.  Tristan and a team of 7 others will compete in the Cosaveli Giro bike race through the Italian Dolmites.

Last year 10 NOMEN (including co-Founder Tristan Almada and UK Olympian Mark Hunter) rowed for 3 days across the Mediterranean from Barcelona to Ibiza. In 2015 we will repeat the Mediterranean challenge and are seeking NOMEN!

Last year we surpassed our fundraising goal of $1 million. This year we have set a goal of $600,000.

To learn more, to become a NOMAN and to donate to our cause, please visit the NOMAN campaign site.

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Thrivers, caregivers, volunteers and staff gather for a day of thriver events!

Last Saturday, March 22, the Foundation attended M.D. Anderson’s S.C.O.P.E. 5K and hosted a thriver meet and greet in Houston, TX following the run.  The day was filled with camaraderie, support, and a feeling of togetherness.

The run was a morning event that featured a survivor fair where the Foundation had a table that served as a beacon for anal cancer thrivers to come together to meet with each other.  For some thrivers, this was their first time connecting with a peer who has had a similar journey.  A post-race celebration with music, food, and an awards ceremony topped off the morning’s event.

After the run, Foundation Executive Director, Justine Almada, and Director of Patient Services and External Relations, Kassandra Samman, hosted anal cancer thrivers and their loved ones at an informal meet and greet.  Stories and experiences were shared among the group.  It was a wonderful opportunity for thrivers to connect and build the community.  Often thrivers go through their anal cancer experience never connecting with fellow thrivers let alone meeting a group of them in person!  To ensure thrivers don’t have to experience anal cancer alone, we have created a Peer Support Program for anal cancer thrivers and their caregivers. It was a wonderful experience and we look forward to sharing days like this with many more thrivers in the future!

The S.C.O.P.E. run was co-founded by one of our scientific advisory board members and oncologist at M.D. Anderson’s cancer center Dr. Cathy Eng.  Of the 5K, Dr. Eng says, “The Sprint for Colorectal Oncology Prevention and Education event (S.C.O.P.E.) was created to bring recognition and awareness to the significance of colorectal and anal cancers. We also celebrate colorectal and anal survivorship and focus not only on our cancer free patients but also our courageous patients that continue to face cancer every day.”

Our next thriver event will be an educational forum in San Francisco, CA on May 13, 2014 that is focused on life after treatment for anal cancer.

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