The HPV and Anal Cancer Foundation http://www.analcancerfoundation.org Eliminating Suffering from HPV and Anal Cancer Wed, 22 Oct 2014 15:54:33 +0000 en-US hourly 1 http://wordpress.org/?v=4.0 How do I find a Pelvic Floor PT? http://www.analcancerfoundation.org/2014/10/22/find-pelvic-floor-pt/ http://www.analcancerfoundation.org/2014/10/22/find-pelvic-floor-pt/#comments Wed, 22 Oct 2014 13:26:17 +0000 http://www.analcancerfoundation.org/?p=3454 This is the third of a three-part series regarding the benefits of physical therapy after treatment for anal cancer. The HPV and Anal Cancer Foundation is thrilled to have licensed physical therapist Dr. Allison Palandrani lend her expertise on this subject matter. Featured Contributor: Allison Palandrani, PT, DPT In the first two parts of our three part […]

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

Featured Contributor: Allison Palandrani, PT, DPT

In the first two parts of our three part series, we discussed how physical therapy (PT) can help people recovering from anal cancer treatment and what the therapy sessions look like. In our third part, we will discuss resources to find a pelvic floor physical therapist to help you.

One of the biggest challenges for people in need of pelvic floor rehab after anal cancer treatment is finding the right physical therapist. A variety of issues are behind this difficulty. First, the supply of physical therapists qualified to treat the pelvic floor does not meet the patient demand. A major reason for this is that pelvic floor therapy is not a part of the majority of current PT school curriculums. So, physical therapists that want to become educated in pelvic floor rehab have to fund their own post-graduate training. While post-graduate educational opportunities in pelvic floor PT do exist, they are limited.

Second, the interaction between doctors and pelvic floor PTs is still very much a work in progress. So it’s not a given that a patient’s physician is going to recommend a PT.

Considering these challenges, how does one find a knowledgeable and experienced pelvic floor PT?

Fortunately, there are extremely knowledgeable and experienced pelvic floor PTs out there, and in this blog I’m going to give you some advice on how to connect with them.

American Physical Therapy Association

The APTA is a professional association for physical therapists in the United States. On its website, the organization offers a searchable database of “women’s health” physical therapists. I qualify the phrase “women’s health” because pelvic floor issues do not discriminate between the sexes. However, the wording used by the APTA has yet to catch up with the evolving field of pelvic floor rehab. Thankfully, some of the PTs listed in APTAs “women’s health” locator treat both women and men with pelvic pain, so despite its name, this database can be used by both men and women to find a PT.

Pelvic Floor Physical Therapy Classes

One great way to find a pelvic floor PT is to get in touch with the folks who are teaching post-graduate courses in pelvic floor PT.

The Pelvic Health and Rehabilitation Center, where I work, is one clinic that teaches such a course. Feel free to contact us, and if we know of a PT in your area that we are comfortable recommending, we will be more than happy to do so.

The Herman & Wallace Pelvic Rehabilitation Institute is also an organization that teaches a variety of post-graduate pelvic floor PT courses. A patient could contact the faculty members of Herman & Wallace and ask for a PT recommendation.

The International Pelvic Pain Society

The International Pelvic Pain Society (IPPS) is a non-profit organization whose membership includes gynecologists, urologists, physical therapists, psychologists, and other health professionals. Since 1995, the IPPS has sponsored a variety of research and educational programs aimed at providing optimal diagnosis and treatment to pelvic pain sufferers. The IPPS has a “find a provider” option on its website here that includes providers in the United Kingdom as well as United States.

Happy Pelvis or other Pelvic Pain Social Media

Happy Pelvis is a Yahoo message group that was started to support pelvic pain sufferers who are seeking PT. Today, Happy Pelvis has hundreds of active members who are always willing to recommend PTs. In addition, there is a searchable list of pelvic pain PTs in the group’s archives.

The above are all great resources that you can use to find a pelvic pain PT in your area.

In addition to your own questions, be sure to ask your potential physical therapist: (1) do you treat pelvic floor issues related to recovery from anal cancer? (Note that many PTs only treat incontinence and anal cancer treatment side effects generally encompass more, so you are looking for a PT that has a broader expertise than incontinence); and (2) How do you treat pelvic pain? What you’re looking for is the treatment approach I’ve described in my previous two blog posts.

Working with a skilled pelvic floor PT who you are comfortable with is paramount to successful therapy. As discussed earlier, there are currently less pelvic floor PT resources for men. However, this trend is beginning to shift over time. With these 3 blogs, my goal is to help people feel empowered to advocate for themselves and seek the care that they need to maximize their pelvic rehabilitation following treatment for anal cancer.

 

 

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What to Expect from Pelvic Floor PT http://www.analcancerfoundation.org/2014/10/09/expect-pelvic-floor-pt/ http://www.analcancerfoundation.org/2014/10/09/expect-pelvic-floor-pt/#comments Thu, 09 Oct 2014 13:15:52 +0000 http://www.analcancerfoundation.org/?p=3456 This is the second of a three-part series regarding the benefits of physical therapy after treatment for anal cancer. The HPV and Anal Cancer Foundation is thrilled to have licensed physical therapist Dr. Allison Palandrani lend her expertise on this subject matter. Featured Contributor: Allison Palandrani, PT, DPT For many people, when they think of physical therapy […]

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

Featured Contributor: Allison Palandrani, PT, DPT

For many people, when they think of physical therapy their mind goes to ankle sprains and joint replacements. So when they’re prescribed physical therapy (PT) for a pelvic floor-related problem, such as pelvic pain or incontinence, after anal cancer treatment, they simply do not understand how physical therapy—something they may have done before in a gym-like setting—will help them.

In my previous blog post, I explained how pelvic floor PT can help those who have undergone treatment for anal cancer address pelvic pain, fatigue, incontinence, lymphedema, and loss of range of motion/stiffness. In this post I’m going to cover exactly what he or she can expect from a pelvic floor PT appointment.

Evaluation Appointment

The purpose of the evaluation appointment is to ascertain your needs and identify how physical therapy can help.

At the evaluation appointment, the first thing we do is have a detailed conversation in order to obtain a patient’s full medical history and any other relevant information. Among the questions we ask are:

When did your treatment start/end? Are you experiencing pelvic girdle/floor pain with physical activity or at rest? What does it feel like? Where is it located? What exacerbates your symptoms? What alleviates your symptoms? Are you feeling fatigued? How does it affect these three functions: Urination? Bowel movements? Sex? Are you experiencing urinary or fecal incontinence? What kind of work do you do? Which physicians are following you regularly? What medications are you taking?

After we’ve gathered all of the relevant info, we will ask the patient to disrobe from the waist down so that we can begin the hands on portion of the initial evaluation.  The physical therapist will typically leave the room for a moment to give the patient privacy and time to get situated and comfortable.

During the hands on part of the evaluation, the goal is to begin to develop an understanding of what is going on with the patient’s tissues, joints, and muscles and determine what the primary impairments are that we need to treat first in order to be both efficient and therapeutic with the treatment.

We choose where to begin this part of the evaluation based on what we’ve already learned from the patient. The evaluation appointment is only a one-hour appointment, so we’ll selectively tackle the areas that are causing the most significant symptoms first.

While every patient’s case is unique, we will always try to evaluate the pelvic floor muscle tone and function on evaluation day. During the internal exam, physical therapists are assessing muscle tone and integrity (muscles too tight or weak?), and a gauge of the patient’s pelvic floor motor control and function. They will also evaluate the connective tissue around the pelvis and lower extremities, because radiation is so often a component of anal cancer treatment the connective tissue surrounding the pelvic girdle tends to become very stiff and painful. The physical therapist will evaluate the internal pelvic floor muscles by inserting one finger into either the vagina or rectum with our female patients and into the rectum of our male patients.

In case you’ve never gotten an explanation for how connective tissue contributes to pelvic pain or you need a refresher, this is my spiel: Connective tissue (which is the tissue that lies between the skin and the muscle) becomes tight as a result of underlying dysfunction in muscles, nerves, organs, or joints. With radiation the connective tissue often becomes very dense and stiff. As a result, there is reduced blood flow and the tissue becomes hyper-sensitive. Therefore, it becomes difficult and painful to manipulate. If we don’t fix it, it’s going to continue to contribute to the underlying impairments in corresponding muscles, nerves, organs, or joints, and the pain cycle will continue.

Often because the pelvic floor muscles and tissues have become so stiff from the radiation the muscles are unable to function properly which can contribute to urinary, fecal, and gas incontinence. This is overwhelmingly common for people that have gone through treatment for anal cancer and although we cannot always cure this, it is often possible to make some improvement. We need to address the pelvic floor muscle tone and focus on neuromuscular control. Essentially, bringing the brain’s focus back to the pelvic floor muscles and re-educating these neural pathways.

In the evaluation appointment, we examine the patient’s connective tissue mobility and their pelvic floor muscle tone and function, plus other areas we are able to get to that we believe are contributing factors to their symptoms. Ultimately, between this first appointment and the next appointment or two, all areas on the patient will be evaluated from the ribs to the knees, back and front.

Typical Pelvic PT Sessions After Evaluation

At the beginning of a typical follow up PT session, the physical therapist will walk into the room with the patient dressed. The physical therapist will take a few minutes to discuss with the patient how they tolerated the previous session, how they are feeling overall, and to address any questions that may have come up so far.

After a brief chat, the physical therapist will leave the room so that the patient can disrobe from the waist down and get situated on the table.

The exact treatment plan will vary depending on each person’s symptoms and presentation. However, if pain is an issue, the first thing that we will typically do during therapy is treat any connective tissue restrictions in the area through connective tissue manipulation. The reason we do the connective tissue manipulation first is that it makes it easier to treat any underlying trigger points or excessive muscle tightness and it calms the nervous system down some; it increases blood flow to the area and it relaxes the pelvic floor a bit.

Typically we spend about half the appointment on connective tissue manipulation and external trigger point release (external work), and half the appointment on internal trigger point release and muscle lengthening (internal work). An appointment lasts for one hour and patients typically see us one to two times per week.

Your physical therapist will also often give you an individualized program to do at home, based on the areas that need improvement. In order to get the most out of your physical therapy treatment, it is important to be diligent about the given home program. Although physical therapy appointments are typically occurring 1-2 hours per week, it is imperative to continue to attend to the areas of involvement/impairment to elicit the desired changes .

It is important to understand that physical therapists don’t use a cookie cutter, one-size-fits-all approach to pelvic floor rehabilitation. Not only will every patient’s treatment be different, but also a specific patient’s treatment will change and evolve from appointment to appointment. It’s also important to know that we will not leave our patients alone in the room hooked up to a tens unit or to a biofeedback machine or performing exercises with an aide.

Before I wrap up, I’d like to stress the importance of PT/patient communication in pelvic floor rehab. As a pelvic floor PT, it’s vital to my treatment approach that my patient knows what I’m doing and why I’m doing it. That’s why throughout the treatment session, I clearly explain to him or her what we’re doing and why it’s being done. On the flip side, it’s equally as important for patients to communicate their questions/concerns to me. When it comes to successful pelvic floor rehab, PT/patient communication is a key to success.

My third installment in the series will focus on how to find the right pelvic floor physical therapist for you.

 

 

 

 

 

 

 

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How Can Physical Therapy Help with Anal Cancer Recovery? http://www.analcancerfoundation.org/2014/09/24/can-pt-help-anal-cancer-recovery/ http://www.analcancerfoundation.org/2014/09/24/can-pt-help-anal-cancer-recovery/#comments Wed, 24 Sep 2014 17:16:06 +0000 http://www.analcancerfoundation.org/?p=3426 This is the first of a three-part series regarding the benefits of physical therapy after treatment for anal cancer. The HPV and Anal Cancer Foundation is thrilled to have licensed physical therapist Dr. Allison Palandrani lend her expertise on this subject matter. Featured Contributor: Allison Palandrani, PT, DPT At the pelvic rehabilitation center where I work as […]

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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 HPV and Anal Cancer Foundation is thrilled to have licensed physical therapist Dr. Allison Palandrani lend her expertise on this subject matter.

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 HPV and 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.

Parts two and three are now available!


Allison head shotAllison 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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HPV: A very real, but entirely preventable threat http://www.analcancerfoundation.org/2014/08/22/hpv-real-entirely-preventable-threat/ http://www.analcancerfoundation.org/2014/08/22/hpv-real-entirely-preventable-threat/#comments Fri, 22 Aug 2014 19:31:25 +0000 http://www.analcancerfoundation.org/?p=3401 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 […]

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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 HPV and 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 26,000 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 HPV and 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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Team NOMAN break world record after rowing 3,100KMs from California to Hawaii http://www.analcancerfoundation.org/2014/07/30/team-noman-break-world-record-rowing-3100kms-california-hawaii/ http://www.analcancerfoundation.org/2014/07/30/team-noman-break-world-record-rowing-3100kms-california-hawaii/#comments Wed, 30 Jul 2014 10:27:49 +0000 http://www.analcancerfoundation.org/?p=3391 Four university friends have completed their epic 3,100km row from California to Hawaii as part of The Great Pacific Race, breaking a world record* in the process as the youngest crew to ever cross the distance and achieve this incredible feat. Jack Carter, from Blackheath, Nick Kempster, from Bath, Chris Blacketer, from Ewell and Mark […]

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Four university friends have completed their epic 3,100km row from California to Hawaii as part of The Great Pacific Race, breaking a world record* in the process as the youngest crew to ever cross the distance and achieve this incredible feat.

Jack Carter, from Blackheath, Nick Kempster, from Bath, Chris Blacketer, from Ewell and Mark Gleeson from Orpington have individually rowed more than 1,500km across the Pacific Ocean since setting off from Monterey on 9th June, and reached their final destination of Honolulu after over 50 days at sea.

The foursome met while studying at the University of Exeter and have spent a year preparing and almost two months living aboard their 24 foot ocean rowing boat, Isabel, crossing the great expanse of the Pacific Ocean using no motor or sails, just sheer physical and mental determination. The boys took turns to man the oars with pairs rowing in 2 hour shifts over the course of 50 days.

The 24-year-olds, known as Team NOMAN, set out to raise awareness of HPV and funds for the HPV and Anal Cancer Foundation by competing as a classic four. They have so far attracted over £40,000 via the charity’s NOMAN Campaign (www.nomancampaign.org) arm, which challenges participants to complete extreme endurance events to raise awareness of HPV, the carcinogenic virus which causes 5% of cancer worldwide and infects one third of the UK population.

Despite emerging unscathed from the shark-infested waters of the Eastern Pacific – and even encountering dolphins one pleasant evening – the boys endured howling winds, whose noise was such that it prevented all conversation, as well as nights so dark they couldn’t see the 20 foot waves or prepare for their impact as they rowed on.

Chris Blacketer said of their journey, “each day our hands got a little more blistered and our stomachs decreased in size, which was definitely a good thing looking at some of the pre departure photos. But the worst aspect by far was the pain in our backsides. Spending pretty much 24 hours a day either sitting or lying on them, meant we were all on a constant stream of painkillers just to get through the days and be able to sit down as we were just so blistered and raw.”

They had originally hoped to complete the challenge within 40 days, but were affected by bad weather and un-favourable winds which pushed them south rather than west, and saw Great Pacific Race entrants struggling to break away from the Californian coast.

Mark Gleeson said: “after spending nearly 8 weeks in a world less than 24ft in length, Hawaii seems impossibly large. We’re in a lot of pain, and have been for a few weeks now. We are barely able to sit, let alone stand, but everyone is so proud of one another.”

Nick Kempster added: “this challenge has been immense and at times it felt like we might not be able to complete it, but everyone’s support and messages (ranging from the outright funny, to those who merely thought they were funny) as well as our ultimate aim of raising awareness of HPV, have kept us going even when we didn’t think we could give anymore. Somehow we always found the strength to keep rowing.”

“We’ve put ourselves through this for a worthy cause, and if we can make a difference in the pain in our backsides will be worth it!”

Justine Almada, co-founder of The HPV and Anal Cancer Foundation, reinforced the importance of this by stating: “the goal is to see universal vaccination for girls and boys so that we can eliminate 5% of cancer. Such a target might seem massive, but it is eminently obtainable. Just as the team’s incredible voyage has proved.”  

To find out more about the NOMAN Campaign visit www.nomancampaign.org

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NOMAN rowers pass the halfway point in the Great Pacific Race http://www.analcancerfoundation.org/2014/07/14/noman/ http://www.analcancerfoundation.org/2014/07/14/noman/#comments Mon, 14 Jul 2014 08:40:45 +0000 http://www.analcancerfoundation.org/?p=2984 After 30 days at sea, Team NOMAN have passed the halfway point of the Great Pacific Race, which is living up to its billing as the biggest, baddest endurance challenge on the planet.

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After 30 days at sea, Team NOMAN have passed the halfway point of the Great Pacific Race, which is living up to its billing as the biggest, baddest endurance challenge on the planet.The harsh conditions have caused major problems for most teams in the Great Pacific Race; five have retired so far, two of which required the assistance of the US coastguardThis is not a challenge for the faint of heart.

Each day the NOMEN’s hands get more blistered, and their stomachs decrease in size, but as Chris has said: “The worse thing by far is the pain in our backsides. Spending pretty much 24 hours a day either sitting or lying on them, they are now not in the best of conditions. Nick and I are on a constant stream of painkillers just to get through the days.”

Despite the extremity of the race, there have been moments of fun for the boys. The NOMEN enjoy bossing around the Port of Los Angeles-bound oil tankers on the VHF who seem to be rather confused by the sighting of 24 foot ocean rowing vessels. They have also communicated with the US NavyLCDR Travis Gill of the Navy had this message for the NOMEN:

“It was the VX-30 Bloodhounds who were trying to locate you that morning. With the moderate sea state and the multitude of white caps it was very difficult to find you visually from 1,000 feet. We were able to see you once you helped talk us onto your position. Thank you for your cooperation … Best of luck to you all, your journey to Hawaii, and your fight to end HPV.” 

It is the night-shifts battling the cold, the spray and the darkness that are the toughest. But from their berth aboard Isabel, Mark had this message for NOMAN supporters: “Please don’t let our sacrifice be in vain! The reason we are putting ourselves through this hell is to raise awareness about HPV related cancers. HPV is the cause of 5% of cancers worldwide. Which is huge! Currently there is a vaccine to prevent the spread of this virus, but the issue is only women getting the vaccine in the UK.  We want to see universal vaccination for girls and boys so that finally we can end 5% of cancer, something so massive yet so obtainable.”

Here’s hoping the conditions ease for the NOMEN in the second half of the race as they close in on Hawaii, and the prospect of a Domino’s pizza!

Please do carry on sending your messages of support through to the NOMEN, they are greatly appreciated and serve to keep the boys motivated during their record attempt! Email nomangpr@gmail.com

Where are the NOMEN now? Track the rowers here!

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Living and Thriving: an Educational Event http://www.analcancerfoundation.org/2014/06/25/living-thriving-educational-event/ http://www.analcancerfoundation.org/2014/06/25/living-thriving-educational-event/#comments Wed, 25 Jun 2014 08:56:20 +0000 http://www.analcancerfoundation.org/?p=3290 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 […]

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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 IMG_7953welcome 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. To read the notes from the Q&A, please click here.

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.

IMG_8073Thank you to everyone who helped to make this evening memorable!

 

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$1.2 MILLION CLOSER TO A CURE http://www.analcancerfoundation.org/2014/04/24/1-2-million-closer-cure/ http://www.analcancerfoundation.org/2014/04/24/1-2-million-closer-cure/#comments Thu, 24 Apr 2014 22:00:33 +0000 http://www.analcancerfoundation.org/?p=3189 It is with great pleasure that we share with you a new exciting joint venture that we hope lays the groundwork for a cure of HPV-positive cancers. The HPV and 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 […]

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Logos

Grant Announcment

From Left to Right: Mary-Jo Murphy, Dr. Piro, HPVACF executive director Justine Almada, grant recipient Dr. Haddad, SU2C President Sung Poblete, FFF President, Alana Stewart, grant recipient Dr. Reinherz, HPVACF co-founder Camille Almada

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

The HPV and 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 2014 AACR CONFERENCE http://www.analcancerfoundation.org/2014/04/24/aacr-conference/ http://www.analcancerfoundation.org/2014/04/24/aacr-conference/#comments Thu, 24 Apr 2014 21:50:18 +0000 http://www.analcancerfoundation.org/?p=3183 From April 5-9, we attended the American Association for Cancer Researcher’s (AACR) annual conference in San Diego, CA. AACR is a global leader in cancer research, and aims to prevent and cure cancer through research, education, communication, and collaboration. The conference is attended by over 17,000 researchers, nonprofits, clinicians, government officials, biomedical companies each year. […]

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HPVACF Booth AACR 2013

Camille Almada, Justine Almada & Kassie Samman managing the ACF information table!

From April 5-9, we attended the American Association for Cancer Researcher’s (AACR) annual conference in San Diego, CA.

AACR is a global leader in cancer research, and aims to prevent and cure cancer through research, education, communication, and collaboration. The conference is attended by over 17,000 researchers, nonprofits, clinicians, government officials, biomedical companies each year.  The HPV and Anal Cancer Foundation was present at the conference to announce the winner of our translational research grant, learn about new research trends, connect with colleagues, and ensure the anal cancer community was represented.

Earlier this year, the President’s Cancer Panel issued a report entitled: Accelerating HPV Vaccine Uptake: Urgency for Action to Prevent Cancer. The report highlights the importance of increasing HPV vaccination rates. Government and scientific representatives held a panel discussion on this report. Participants discussed the importance of increasing vaccination rates among 11-12 years olds, especially for males. To view the Panel’s report, click here.

At this conference, we announced the recipient of our collaborative $1.2 million award: the Stand Up To Cancer-Farrah Fawcett Foundation Translational Research Grant. The researchers are Dr. Ellis L. Reinherz, M.D., Ph.D and Dr. Robert I. Haddad, M.D. doctors at the Dana Farber Cancer Institute. The three-year grant will research HPV-related cancer immunotherapy and therapeutic vaccines for patients with recurrent oral, anal and cervical cancer. For more information about this grant, click here.

Trends in cancer discussed at the conference included immunology and challenges for researchers with limited government funding available. With immunology a consistent trend in the advancement of cancer investigation, our collaborative grant is truly on the cutting edge of research.

Throughout the conference, we raised awareness about HPV and anal cancer at the HPV and Anal Cancer Foundation table in the main conference hall! We provided researchers and biotech companies with information about our programs. We gave out the popular “Kick Cancer’s Ass” bracelets, and had the opportunity to network with other organizations on patient and research programs.

Leaving the conference we are rich with new ideas, contacts and hope for innovation as we continue to seek new ways to move the HPV research field forward.

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THE 2014 NOMEN CONTINUE THEIR INTREPID ADVENTURES TO END HPV http://www.analcancerfoundation.org/2014/04/11/2014-nomen-continue-intrepid-adventures-end-hpv/ http://www.analcancerfoundation.org/2014/04/11/2014-nomen-continue-intrepid-adventures-end-hpv/#comments Fri, 11 Apr 2014 19:40:13 +0000 http://www.analcancerfoundation.org/?p=3073 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 […]

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Meet the NOMEN

Meet the Great Pacific Race 2014 NOMEN : Jack, Mark, Chris ad Nick

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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