Cervical Cancer and HPV

What a relief that the weather for yesterday’s periodic commute to New York for chemotherapy was much warmer than the bone chilling, windy cold backdrop of the past several days. Even more pleasant was a punctual public transportation commute, which got me to my appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) on time. Work on the signals and tracks at NY Penn Station frequently delayed my trains in recent weeks, so I never know quite what to expect these days.

My blood counts were amenable to the scheduled dose of chemotherapy, which was infused as planned. My positive transportation karma continued and I was back home resting in Pennsylvania by mid-afternoon. No more treatment until after my CT scan later this month for an update on my disease status (queue “scanxiety”).

Traveling alone, I took time during my commute to listen to music on my headphones and catchup on news events. Scrolling through my Twitter feed, I came across the fact that January is Cervical Cancer Awareness Month. This caught my eye, as cervical cancer and oropharyngeal cancer (tongue, throat, and tonsil – as in my particular diagnosis) collectively account for more than two-thirds of the cancer cases caused by high-risk human papillomavirus (HPV) infection. According to the CDC, more than 30,000 new cancers attributable to HPV infection are diagnosed each year.

HPV is the most common sexually transmitted infection in the United States. Nearly 80 million people — about one in four Americans — are currently infected and about 14 million people become infected with HPV each year. Nearly all sexually active people get infected with HPV at some point in their lives.

For most people exposed to HPV, the virus goes away on its own, but a small group of people will experience health problems — sometimes even 20 or 30 years after the initial contact — and go on to develop cancer. In these individuals, HPV can cause changes in the body that can lead to the development of:

  • Cervical, vaginal and vulvar cancer in women;
  • Penile cancer in men; and
  • Oropharyngeal (the tongue, tonsils and back of the throat), anal, and rectal cancer in both women and men.

The good news is that HPV infections and the seven cancers attributed to them are highly preventable with available vaccines that protect against the high-risk HPV 16 and HPV 18 types responsible for 90 percent of HPV-related cancers. The bad news is that despite strong data showing the safety and benefits of the vaccines, the rate of vaccination in both sexes is disappointing. Across America, only 49.5 percent of girls and 37.5 percent of boys were up to date with the recommended HPV vaccination series, according to a 2017 CDC report. Interestingly, around 80 percent of adolescents receive two other recommended vaccines—a vaccine to prevent meningococcus, which causes bloodstream infections and meningitis, and the Tdap vaccine to prevent tetanus, diphtheria, and pertussis.

So, with PLENTY of room for progress in vaccinating both girls and boys against HPV, please schedule time to talk to your pediatrician now to eradicate this cancer-causing virus.

PS – There is undoubtedly a role for gender-specific cancer awareness activities, such as Cervical Cancer Awareness Month. From pink ribbons to professional sports apparel, breast cancer awareness advocates have done an amazing job spreading the word that October is National Breast Cancer Awareness Month. But each September, during National Prostate Cancer Awareness Month, the color blue doesn’t consume the country with the same verve. And reduced awareness correlates with less money*, as prostate cancer research receives less than half of the funding as breast cancer research from the American Cancer Society. On this note, perhaps it is time to at least consider “HPV-Related Cancer Awareness Month” or something gender neutral?

* Of course, correlation does not imply causation…

New Study Highlights Importance of HPV Prevention

A new study published in the journal Cancer represents the largest population-based study of survival for human papillomavirus (HPV)-associated cancers in the United States, covering 59% of the population. The study covered 220,211 histologically-confirmed cases diagnosed during 2001 through 2011 (see Figure 1).

HPV is the most common sexually transmitted infection in the United States. Nearly 80 million people — about one in four Americans — are currently infected and about 14 million people become infected with HPV each year. Nearly all sexually active people get infected with HPV at some point in their lives.

For most people exposed to HPV, the virus goes away on its own, but a small group of people will experience health problems — sometimes even 20 or 30 years after the initial contact — and go on to develop cancer. In these people, HPV can cause changes in the body that can lead to the development of seven different types of cancer:

  • Cervical, vaginal and vulvar cancer in women;
  • Penile cancer in men; and
  • Oropharyngeal (the tongue, tonsils and back of the throat), anal, and rectal cancer in both women and men.

According to the new study, HPV-related oropharyngeal cancer surpassed the incidence of cervical cancer during the period (80,151 versus 79,425 patients, respectively). Of the 80,151 oropharyngeal patients, nearly 80 percent (63,457) were male. Collectively, these two cancers accounted for more than two-thirds of the cases in the study.

Figure 1 (adapted from Cancer Volume 124, Issue 1, January 1, 2018, Pages 203–211)

For women diagnosed with cervical cancer, the 5-year relative survival rate was high (64.2 percent), which may reflect the availability of screening tools and early detection. Patients diagnosed at the localized stage (only in the part of the body where it started) generally have a better prognosis compared with those diagnosed at regional or distant stages. In this regard, nearly one-half of cervical cancers in the study were detected at the localized stage.

The 5-year survival rate for patients with HPV-related oropharyngeal cancer (51.2 percent), was the second lowest among HPV-associated cancers. Study researchers observed that more than 60 percent of HPV-associated oropharyngeal cancers were diagnosed at the regional stage (spread to adjacent organs, structures, or regional lymph nodes) compared with less than 40 percent for other HPV-associated cancers. Only 15.9 percent of HPV-related oropharyngeal cancers were diagnosed at the localized stage.

The authors conclude that in the absence of routine screening, with the exception of cervical cancer, primary prevention through HPV vaccination is essential—especially for oropharyngeal cancer, which is expected to become the most common HPV-associated cancer by 2020. HPV vaccines are approved and recommended for use among both boys and girls.

Sadly, only 49.5 percent of girls and 37.5 percent of boys in the United States were up to date with the HPV vaccination series, according to a 2017 CDC report. In sharp contrast, around 80 percent of adolescents receive two other recommended vaccines—a vaccine to prevent meningococcus, which causes bloodstream infections and meningitis, and the Tdap vaccine to prevent tetanus, diphtheria, and pertussis.

Please talk to your pediatrician about vaccinating your 11-year-old boys and girls against HPV today to eradicate this cancer-causing virus.

Two Years Gone

You’ll know from the opening pages of my memoir A Walk with Purpose that it was the day before Thanksgiving in 2015 when I first discovered a large lump on the right side of my neck. The discovery catapulted me on a journey that I never could have imagined, full of twists and turns and changing the very fiber of my being—physically, emotionally and spiritually.

A lot has changed in the past two years—some good, some bad, some perhaps downright ugly. But Thanksgiving has always been one of my favorite holidays—a time of reflection and giving thanks for the goodness of the season past instead of complaining about what we don’t have.

Throughout the process of writing my memoir, I was constantly amazed to see how all the gifts and experiences of this world came together like tiny puzzle pieces to reveal the bigger purpose of my life. In particular, how an unlikely career path to the biotechnology industry would help forge key relationships, open new doors, and help me navigate a cancer diagnosis and treatment through the knowledge gained over decades of service and leadership. Most importantly, how I could use all of the aforementioned to help others facing head and neck cancer caused by the human papillomavirus (HPV).

In some ways, my revelation was reminiscent of the first time I saw the movie Signs written and directed by M. Night Shyamalan. In the movie, a father and former priest lives with his asthmatic son, his daughter who constantly leaves glasses of water sitting out around the house, and his younger brother, a failed minor league baseball player, on an isolated farm in Bucks County, Pennsylvania (coincidentally where we have lived for more than 15-years…). The father lost his faith and gave up his priesthood after his wife died in a local traffic accident. Towards the end of the movie, a crucial scene reveals the unlikely connection between asthma, glasses of water, and the mother’s final words to her husband instructing his brother to “swing away.” At the end of the movie, the father is shown returning to his priestly duties, apparently having regained his faith.

During 2017, I was fortunate to write and publish (then rewrite and republish…) my memoir. Since my diagnosis, I’ve also published a total of 70 posts (gulp!) on my patient blog. Supporting these efforts, I’ve worked with a publicist and conducted numerous interviews and penned guest editorials for various media outlets. All of these actions designed to: 1) help increase awareness of HPV and its link to six cancers in men and women; 2) underscore the need for additional prevention efforts for HPV-associated cancers, including efforts to increase vaccination coverage; 3) correct the misperception that HPV is mainly a disease affecting women; and, 4) highlight how HPV can be spread in the fluids of the mucosal membranes, which line the mouth, throat and genital tracts. Looking back at my efforts, I hope you’ll agree it has been a productive year.

I’m currently going through my third treatment regimen (chemotherapy) with the simple hope of buying more time. My body is weary from repeated assault with toxic chemicals aimed to keep the cancer at bay—hoping to see the day when a better treatment option becomes available. Fortunately, my current quality of life allows me to continue my walk with purpose. In fact, today I am doing a couple of media interviews and meeting with a head and neck cancer patient support group in Princeton, New Jersey.

My next CT scan has been scheduled for the last week of November. The results of which will inform whether or not my cancer continues to shrink, stays stable, or is progressing. Regardless of the outcome, I strive to simply live in the moment and take advantage of the Thanksgiving period to consider how we can spread more happiness around, to look back at all the great memories and good people who came into our lives.

May the good things of life be yours in abundance not only during November but throughout the coming year. Thank you to everyone with an interest in my story for your continued support and for keeping in touch!

No Such Thing as “Risk-Free”

In a recent guest editorial that I penned for BioCentury, I referenced that a parent’s choice whether or not to vaccinate their child against the human papillomavirus (HPV) isn’t a “risk-free” choice. Every drug has risks – consider the following statement by the U.S. Food and Drug Administration (FDA): “although medicines can make you feel better and help you get well, it’s important to know that all medicines, both prescription and over-the-counter, have risks as well as benefits.” I would also point out that there are risks in forgoing a medication.

Let’s take a look at the HPV vaccine’s side-effects according to the prescribing information for Gardasil® 9 (Human Papillomavirus 9-valent Vaccine, Recombinant). The most common side effects include pain, swelling, redness, itching, bruising, bleeding, and a lump where your child got the shot, headache, fever, nausea, dizziness, tiredness, diarrhea, abdominal pain, and sore throat. These are adverse events disclosed by the sponsor (Merck & Co., Inc.) to the FDA from completed clinical trials of Gardasil 9. Since licensure in 2006, over 270 million doses of HPV vaccines have been distributed and the sponsors are obligated to report any new side effects to the FDA.

What’s that you say? You don’t trust the pharmaceutical industry? The Global Advisory Committee on Vaccine Safety (GACVS), an independent expert clinical and scientific advisory body that provides the World Health Organization (WHO) with scientifically rigorous advice on vaccine safety issues of potential global importance, first reviewed the safety data for HPV vaccines in 2007 and subsequently in 2008, 2009, 2013, 2014, 2015, and 2017. In each period, the GACVS examined various vaccine specific safety issues, such as links to Guillain-Barré syndrome (GBS) and other autoimmune safety issues. No other adverse reactions have been identified and GACVS considers HPV vaccines to be extremely safe. According to the WHO, there are now accumulated safety studies that include several million persons and which compare the risks for a wide range of health outcomes in vaccinated and unvaccinated subjects.

Early on, the GACVS was presented with signals related to anaphylaxis and syncope related to the HPV vaccines. According to the GACVS, the risk of anaphylaxis from HPV vaccines has been characterized as less than 2 cases per 1,000,000 doses, and syncope was established as a common anxiety or stress- related reaction to the injection. Anaphylaxis is a severe allergic reaction that needs to be treated right away with an epinephrine (adrenaline) shot. Anaphylaxis is rare, and most people recover from it. Syncope, also known as fainting, is a loss of consciousness and muscle strength characterized by a fast onset, short duration, and spontaneous recovery. It is caused by a decrease in blood flow to the brain, usually from low blood pressure. For these reasons, the prescribing information for Gardasil 9 recommends observation of the individual for 15 minutes after administration.

Next, let’s consider the risks of not getting vaccinated against HPV. Again, according to the prescribing information for Gardasil 9, the vaccine helps protect girls and women ages 9 to 26 against cervical, vaginal, vulvar, and anal cancers and genital warts caused by 9 types of HPV. Gardasil 9 also helps protect boys and men ages 9 to 26 against anal cancer and genital warts caused by those same HPV types. Accordingly, individuals who do not get vaccinated against HPV are at risk for the aforementioned cancers and genital warts.

In addition, the 9 types of HPV that infect the genital areas can also infect the mouth and throat (called oropharyngeal cancers). HPV is thought to cause 70% of oropharyngeal cancers in the United States, with HPV type 16 causing 60% of all oropharyngeal cancers. The HPV vaccine was originally developed to prevent cervical and other less-common genital cancers and has been shown in clinical studies to prevent cervical and other precancers. However, HPV vaccines could also prevent oropharyngeal cancers because the vaccines prevent infection with HPV types that can cause oropharyngeal cancers.

HPV vaccines were not available until I was age 38, which is well-beyond the upper age limit of 26 when the vaccines are considered effective. In late 2015, I was diagnosed with poorly differentiated, oropharyngeal squamous cell carcinoma, HPV type 16 related. My three treatment regimens thus far have included: chemoradiation, immunotherapy and currently chemotherapy.

Side-effects that Michael Becker has experienced from cancer and its treatment (click image to enlarge)

My diagnosis is terminal, so “death” would be the primary side effect from the disease that I would gladly forgo in favor of any of the aforementioned HPV vaccine side effects. Setting my grim humor aside for the moment, there are more than a dozen other side-effects that I have personally experienced to date from either cancer or its treatment (see accompanying image for details). And these side-effects don’t include others that I haven’t personally experienced, such as kidney damage.

I’m an advocate of HPV vaccination and strongly encourage parents to speak with a physician when it comes to deciding whether or not to vaccinate a child. The purpose of this blog post is to underscore that deciding not to vaccinate against HPV isn’t a risk-free decision. In my experience, the diagnosis of any one of the six cancers resulting from HPV infection is associated with plenty of important risks for parents to also consider.

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The Space Between

The purpose of my blog and entries is multifaceted. Some are designed to entertain, while others focus on education and enlightenment for those suffering from cancer and the people who surround them. Others are simply updates on my disease for family and friends.

I don’t consider myself an optimist or pessimist, but rather a realist. Accordingly, I prefer to let the facts in my blog speak for themselves and let you, the reader, decide if the glass is half full or half empty.

For me, life is usually viewed in absolutes. Things are either black or white; rarely, if ever, shades of gray. And I like it this way…nice and neat. This is probably why uncertainty, which falls into the shades of gray zone, doesn’t sit well with me. Unfortunately, living with a terminal cancer diagnosis introduces a fair amount of uncertainty – almost from day one.

It starts with waiting for the initial diagnosis. Is it cancer or not? Usually this is a black or white analysis. The diagnosis of cancer then leads to a myriad of uncertainties. The patient wants to know details about the treatment options, their side effects and quality of life, and whether the potential for cure exists. Lots of gray zone issues suddenly appear.

Although clearly outside of my comfort zone, I’ve been able to successfully navigate the sea of uncertainties for the past two years with one notable exception: how much time do I have remaining? Or at the very least, how much time remaining where my quality of life allows me to function as a productive member of society?

Right now, life isn’t horrible. Sure, I suffer side effects from weekly chemotherapy treatment, such as loss of appetite and fatigue. And I lost my hair but save a ton of money on haircuts and shampoo. Nevertheless, I’m able to enjoy time with family and friends and keep busy with my mission to help raise awareness of the human papillomavirus (HPV), six cancers that are directly linked to HPV, and the available vaccines that could prevent such cancers for others in the future.

Enduring weekly chemotherapy is made easier given the fact that my tumors decreased in size according to my last imaging procedure. Exactly what the tumor regression means in terms of extending my life is unknown. Reality check – published scientific literature still favors that celebrating the New Year isn’t a likely event for me.

However, every patient is different – and there is one absolute truth in life: no one knows exactly when or how they will die. While perhaps the exception versus the norm, we’ve all heard dramatic stories about people living longer than originally expected. My realist nature makes me reject such anecdotes, but it does allow me to consider the fact that progress in treating cancer is advancing at a rapid pace and perhaps my existing treatments will buy me just enough time to receive some new exciting approach that keeps my disease in check.

In the interim, my greatest challenge is what to do with the “space between.” I’m talking about the period between now and when I eventually die, which could be measured in as little as one, two, or three months or as many as several years. No one knows for sure.

For example, I could start to write a new book. Although having recently gone through that process, it is a tremendous investment of time and focus away from spending quality time with family and friends. While it could be a worthwhile sacrifice, I just couldn’t bear the thought of embarking down that road again without knowing that I had sufficient time to finish it.

My other passion, photography, is made challenging since I really don’t know how much energy or how I’m going to be feeling on any given day. This makes scheduling photo sessions weeks in advance to allow adequate preparation time a risky proposition at best. For example, I never could have predicted ending up in the hospital on three separate occasions in July/August (including a trip to the intensive care unit). While life has been quite calm as of late (thank goodness…) there is always the chance that something else is lurking around the corner.

Besides, I was already able to complete two significant bucket-list items this year with the publication of both my memoir A Walk with Purpose and large format, high-quality, coffee table photography book, Strength, Confidence, & Beauty. In the near future, could I really top what I’ve already accomplished in each area?

Equally important to projects that produce legacy materials of a life well-lived, there is that pesky task of providing income to help support my family. I haven’t quite found an appropriate place on my resume for “terminal cancer patient” and I suspect few employers would find that an attractive attribute. On the flip side, freelance work or part-time positions might be workable solutions.

Don’t get me wrong, I’m not laying on the couch every day pondering the “space between” and wallowing in depression. I’ve been keeping plenty busy promoting my books and taking advantage of the plethora of amazing media outlets that express an interest in helping me with my HPV awareness mission. Perhaps that is simply how I’m meant to fill the space between?

At first, I thought if I could simply touch one person’s life through my efforts then I made a difference. But I’ve been inundated with messages from family, friends, and complete strangers who share personal stories about having their children vaccinated for HPV as a direct result of my efforts. Is there anything else I could do that would be as gratifying?

If you or a loved one is affected by cancer, I’d love to hear how you deal with the space between. Rather than messaging me directly, please feel free to comment on this post so that others can benefit from your shared experience.

Calm

It’s been a few weeks since my last blog post, so I wanted to provide a brief update. The good news is that life has been rather uneventful – no trips to the emergency room, no new side effects, etc. Let’s face it, we were due for a break!

Last week was not only the Labor Day Holiday but also a scheduled break from chemotherapy to allow my blood counts, etc. to recover. As a result, as of Monday morning I was feeling better than any time in recent memory. My appetite has been good and my energy level afforded us an opportunity to take our puppy Humphrey with us to walk around a local art fair this past weekend.

This week, however, I’m back to week #1 of my treatment schedule starting with a doublet of chemotherapies (paclitaxel and carboplatin). For me, the carboplatin results in greater side effects, particularly stomach upset, decreased appetite, and fatigue. My typical four week treatment “cycle” looks like this:

Week #1: paclitaxel + carboplatin
Week #2: paclitaxel only
Week #3: paclitaxel only
Week #4: holiday/break (no treatment)
Lather, rinse & repeat

Before this week’s chemo appointment, I had time and energy to visit with another one of my social media connections for the first time (@BursatilBiotech). She traveled from Argentina to New York with a relative for vacation and we had arranged a brief meeting in the morning while she was in town.

@BursatilBiotech and Michael Becker

My next chemo break falls during the first week of October. At that time, I’ll have my periodic imaging procedure to see if the cancer is continuing to respond favorably to the treatment. Based on improved air flow to my lungs, I’m hopeful for some continued good news.

In the meantime, I’ve been keeping busy with my mission to raise awareness for the human papillomavirus (HPV), its direct link to six cancers, and the available vaccines that can prevent HPV. For example, my guest editorial on the topic appears in this week’s issue of BioCentury and is freely available to view on their website by clicking here. In addition, last Thursday I did a television interview with CURE Today and you can view the first segment on their website by clicking here. I’m so very grateful to these and other media outlets that have provided me with a platform to advance my mission!

Most importantly, today is another gift that I will truly treasure…as I get to celebrate my youngest daughter’s birthday. Happy 17th birthday Megan!!

Thankful for Cancer?

In recent blog posts, I discussed my interest in trying new things, such as transcendental meditation, acupuncture, sound therapy, etc. I connected with other terminal cancer patients and found that some of them were pursuing similar avenues.

Through these interactions, I was introduced and started reading The Tibetan Book of Living and Dying by Sogyal Rinpoche, Patrick D. Gaffney, and Andrew Harvey (thank you @StacieChevrier). I haven’t read much of the book yet, but so far it is chock full of valuable insights and memorable quotes. For example:

“Tibetan Buddhists believe that illnesses like cancer can be a warning, to remind us that we have been neglecting deep aspects of our being, such as our spiritual needs. If we take this warning seriously and change fundamentally the direction of our lives, there is a very real hope for healing not only our body, but our whole being.”

The quote implies that cancer could actually be a good thing. Similarly, in the past I’ve come across posts from other cancer survivors talking about the various ways they were actually “thankful” for getting cancer. I must admit, at the time I found such notions absolutely ludicrous. I certainly wasn’t thankful for having cancer. F@ck cancer!

However, I am starting to perhaps better understand and appreciate the nature of such remarks. For example, as stated in the quote above “…cancer can be a warning, to remind us that we have been neglecting deep aspects of our being.”

In the past, I was very skeptical of meditation, acupuncture, and other spiritual needs. Cancer opened my eyes to at least try new techniques, and now I am a believer and realize the void that they can fill.

By writing and publishing my memoir A Walk with Purpose along with my photography book Strength, Confidence & Beauty: A Collection of Female Portraits, I learned a lot about myself and my life’s journey. Tackling these activities were always in the back of my mind, but somehow there was never enough time to focus on them. Cancer provided both the motivation and a sense of urgency.

Left to right: Michael, Sheff, Brad (and, of course, Humphrey). Click to enlarge.

Through my cancer diagnosis, I also started connecting with amazing individuals and received overwhelming support from mere acquaintances to complete strangers. Just yesterday, a few of my Twitter buddies (@bradloncar and @SheffStation) made the long trip to rural Pennsylvania just to spend some quality time together. To be fair, it’s completely possible they just came to see our new adorable puppy Humphrey – but, hey, I’ll still take it. (In all seriousness, many thanks to Brad, Sheff, and others that have visited in recent weeks and months!)

I learned to “live in the moment,” appreciate the little things, and slow my life down a bit. Of course, some of this didn’t come by choice, but rather the diminished energy and fatigue of battling cancer.

Before cancer, I was wandering aimlessly with no real goal in life other than a desire for material wealth. Now, I am on a mission – to raise awareness of the human papillomavirus (HPV) and its link to six different cancers with the hope of getting more children vaccinated so they don’t suffer my same fate. I am someone with a deep motivation, a purpose in life, a definite direction, and an overpowering conviction that there will be a reward at the end of it all.

And so, I asked myself: “Am I thankful for getting cancer?” At this point, the fears and future uncertainties prevent me from answering with a resounding “yes.” But, I am warming up to the idea that cancer has changed me for the better, and for that – it is hard not to be thankful.