For the past few years, I’ve received three separate cancer treatments with little reprieve from many of the associated toxicities. This month, I finished my ninth cycle of therapy – a combination of two chemotherapeutics (carboplatin and paclitaxel). The chemotherapy has significantly reduced the size of tumors in my lungs and spleen, but they have not entirely gone away.
This week, I had my periodic CT scan to assess whether the cancer is progressing, regressing, or continuing to remain stable. The positive results, which came today, show no new metastases (the spread of cancer) and unchanged disease in my spleen and lungs since my last CT scan from January 19, 2018.
After a great deal of consideration, I have decided to take a well-deserved break from treatment. It will allow me to recharge, improve my quality of life, and even allow me to travel and hike. In a few months, I’ll have another CT scan to see how my cancer behaved during the break. I hope that it remains stable or perhaps progresses slightly, although anything is possible during this period. I still recall how quickly I went from “no evidence of disease” to the progression of disease in both lungs and spleen (see accompanying image).
I’m quite proud of everything that I’ve accomplished since my initial diagnosis back in December 2015. I wrote and published my memoir, significantly raised awareness for the human papillomavirus (HPV) and its link to six cancers through numerous articles, radio, and television interviews, authored more than 80 blog posts, vehemently opposed the Right to Try Act, and even published a collection of my photography work.
I believe that my current “walk with purpose” as a patient advocate is far from finished. But with spring and summer around the corner – I want to get outside, travel, and enjoy life without being hampered by the deleterious effects of chemotherapy.
The title of this post reflects the 1929 slogan used in advertising for Coca-Cola. It takes on special meaning for me, as I hope that this pause in therapy helps me heal both physically and mentally. And that would indeed be very refreshing.
Proponents of Right to Try know precisely how to wage an effective public relations war by tugging at people’s heartstrings. They tout grim statistics, such as the fact that over 600,000 Americans with cancer are projected to die in 2018 – supposedly because they are waiting for access to experimental therapies that haven’t yet been approved. Pitchforks and torches in hand, libertarians use the FDA as a scapegoat for blocking patient access to a mystical treasure trove of investigational treatments.
The fact remains that under existing regulations, patients can already seek expanded access, sometimes called compassionate use, to experimental therapies that are currently being studied for safety and effectiveness but that have not yet been approved by the FDA. For the past decade, the FDA has received approximately 1,000 such requests for expanded access each year. But with more than 600,000 Americans dying each year from cancer alone, Right to Try supporters argue that red tape and government regulations must be restricting access to promising new treatments for the other 599,000 patients. Hence their desire for an alternative parallel pathway that eliminates these barriers.
Beginning in 2014, Right to Try has now been signed into law in at least 38 states. FDA regulations cannot preempt state laws that preserve constitutionally protected rights, such as the fundamental right to life and medical self-preservation (e.g., the legalization of marijuana in individual states while still illegal under federal law). And yet, there is scant evidence that patients have successfully accessed investigational drugs through state Right to Try programs who wouldn’t otherwise be eligible under the existing expanded access program. This provides further support that the FDA isn’t the bottleneck.
Since the FDA clearly isn’t the problem, why are Right to Try supporters so intent on creating a ‘parallel pathway’ that excludes them? Why not collect more data to understand exactly why there are only 1,000 requests for expanded access each year? More importantly, if Right to Try is the solution – why hasn’t it been successful in state programs over the past several years?
While Right to Try is being positioned as pro-patient, in reality, it’s nothing more than a libertarian Trojan horse designed to weaken the FDA. And once this dangerous precedent is set, I fear it could easily be expanded to include patients with less severe diseases.
No one, especially myself as a terminal cancer patient, wants to deny patients the right to receive potentially beneficial drugs. We already have that right today. Our current expanded access framework is meant to protect patients, and the FDA has a program that approves nearly 100 percent of all expanded access requests it receives. My sincere hope is that the House votes today to put the safety and best interests of patients before politics.
The past week is a blur. It started last Saturday with the airing of a national television segment on CBS during both their morning and evening broadcasts. Reported by Dr. Jon LaPook, Chief Medical Correspondent for CBS News, the show highlighted the recent rise in head/neck cancer in men due to “oral” human papillomavirus (HPV) and featured my story as an example. Special thanks to everyone who played a role in creating this important segment! A replay is available below:
On Monday, I traveled to Washington, DC via train to speak at the Rare Disease Legislative Advocates 2018 Legislative Conference in the session titled, “Right to Try – Is it a Solution?” I haven’t been shy about my cynical perspective on this pending legislation. You can learn more by reading my opinion article on the topic (click here) and listening to a replay of my interview with NPR’s Scott Simon (click here).
Tuesday morning marked the beginning of my ninth cycle of chemotherapy at Memorial Sloan-Kettering Cancer Center (MSKCC) in NYC, which will slow me down a bit. Recall that each chemotherapy cycle is four weeks, beginning with both carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover. Towards the end of March, I’ll have another CT scan to determine if my disease is still stable or progressing. In this regard, I’m hoping March indeed goes out like a lamb!
In the meantime, I’m participating in several additional media opportunities to help tell my story and create more awareness for HPV and its link to cancer in both men and women. Interestingly, the International Papillomavirus Society (IPVS) has declared this Sunday, March 4th as “International HPV Awareness Day” to promote awareness of and education around HPV infection, how it spreads, and how HPV infection and the cancers it causes can be prevented. Click here for more information.
Finally. The type of day that begs you to go outdoors. Sunny and warm, with just the hint of a breeze. Time to go outside and shake the winter blues. Just a walk; no purpose this time.
Usually, I would have traveled to NYC today for chemotherapy treatment at Memorial Sloan-Kettering Cancer Center (MSKCC). However, my recent hospital stay due to low white blood cell counts led my oncologist to postpone treatment for an extra week just to be safe.
I didn’t need to ask our three dogs if they were interested. As soon as I grabbed a leash, they all swarmed me like I was holding leftover steak. I used to be able to manage two at a time for a walk, but not anymore. Three guesses as to which one got to go first.
I’m not sure who is in worse shape – me or Humphrey. Before we embarked, I set my expectations low. If I could manage only a few blocks, then so be it.
As soon as we got out the door, the warm air and sun on my skin felt amazing. I wore a sweat jacket over a t-shirt but took it off after only a block or two. Before I knew it, Humphrey and I had made it to my stretch goal – the Garden of Reflection 9-11 Memorial. Approximately a 2-mile roundtrip walk from our house.
When we arrived back home, I was sweating and Humphrey didn’t stop panting for 30-minutes. Clearly, we need to do this more often.
They’re an increasingly rare event, but days like today when I’m both motivated and have energy are a blessing. Hopefully, tomorrow will be the same –and I can walk the other two pups!
It’s strange how certain moments can really stick in one’s mind. For me, one such memory is from the beginning of Deadpool, a 2016 American superhero film based on the Marvel Comics character of the same name. A comedy seemed appropriate, as I was undergoing initial cancer treatment at the time and needed a good laugh.
Watching the movie alone from the comfort of my home on cable television, there were many moments when I chuckled. However, one scene caught me off-guard. You see, after learning that he has advanced cancer, lead character Wade Wilson (Deadpool/Ryan Reynolds) breaks up with his fiancé Vanessa rather than subject her to life with a terminally ill man.
“Listen, we both know that cancer is a shit-show. Like a Yakov Smirnoff opening for the Spin Doctors at the Iowa State Fair shit-show. And under no circumstances will I take you to that show. I want you to remember me, not the ghost of Christmas me.”
“The worst part about cancer isn’t what it does to you… but what it does to the people you love.”
– Wade Wilson (Ryan Reynolds) in Deadpool
Sure, it was only a movie. But the dark cancer message “what it does to the people you love” haunted me for days. Would my wife and children actually be better off not being subjected to my forthcoming shit-show? It wasn’t just a Hollywood moment, but rather a genuine concern.
Yup, running away. Disappearing. Going off-the-grid so that no one could find me. Deteriorating, suffering, and ultimately dying alone. No record or witness for what I went through. Those who knew me would simply remember me for who I was, not what I had become – a terminally ill cancer patient. I foolishly gave it all serious consideration in the name of protecting my family. Acquiring superhero powers just didn’t seem as viable.
Fast-forward to today and clearly, I did the exact opposite of simply disappearing into obscurity. I started this blog, published my memoir, and became a vocal patient advocate. Through radio, television, and numerous articles and interviews, I helped increase awareness for the human papillomavirus (HPV), its link to cancer, and the importance of HPV vaccination. Knowing that I couldn’t shield my family from the shit-show, helping others avoid my plight seemed like the only logical alternative to extract some good from a bad situation.
I suspect many people on the outside will have strong opinions as to whether or not I made the right decision. Entering my third year of treatment, I can say that I’m still not completely sure. There is a long, long list of sights, sounds, and sadness during this period that I would gladly erase from my family’s memory. But there are also many good times that I truly treasure.
Fortunately, I had complete faith in my wife, Lorie. I knew her resolution, inner power and confidence, which I found attractive qualities from day one, would help get her through the shit-show. She possessed the requisite strength and capacity.
It has been anything but easy, yet I believe our relationship is even stronger now as a result of cancer. Or, perhaps Lorie is just experiencing the Florence Nightingale Effect, as she has become quite a skilled cancer caregiver.
As we approach Valentine’s Day (also her birthday!), a special “thank you” to Lorie for simultaneously juggling work, caregiving, housekeeping, raising our daughters, being a strong role model for them, managing our small petting zoo, and much, much more. Happy Birthday and Happy Valentine’s Day, Lorie! You didn’t deserve a front row seat at the shit-show and I’m very lucky to have you by my side.
It started with a runny nose and sneezing last weekend. Then came a cough and a mild fever that never went above 99.7 Fahrenheit – that is until the following Wednesday. A brief telephone discussion with the doctor on call late that evening confirmed that a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility was in order.
Following my latest round of chemotherapy, a fever of 100.4 Fahrenheit or higher is disconcerting. It could signal that I’m neutropenic – running dangerously low on a type of white blood cell (neutrophils) that serve as the body’s primary defense against acute bacterial and certain fungal infections. The chemotherapy I’ve been receiving can reduce the number of neutrophils circulating in the blood. Alternatively, a fever could be associated with the flu, which is particularly dangerous this season and breaking records.
Lorie and I started packing for an overnight stay at the MSKCC “bed and breakfast” as we like to call it. Before heading out, I hugged each of our dogs – just in case. Unfortunately, that simple action set into motion a rush of feelings and steady stream of tears down my cheeks. I was a total mess by the time Lorie backed the car out from the garage. Our daughters weren’t home at the time, which in retrospect was probably best.
Upon arrival at urgent care just before midnight, a series of tests were ordered – blood work, urine, chest x-ray, and nasal swab to test for influenza. The blood work came back first and my absolute neutrophil count (ANC) was 800 cells per microliter of blood. With an ANC below 1,000 cells per microliter of blood, the risk of infection increases. Combined with my fever, the medical team informed me that I was going to be admitted to the hospital and given a broad spectrum, intravenous antibiotic Zosyn® (piperacillin and tazobactam).
One by one, the other test results came back normal – that is until the nasal swab revealed I was positive for Influenza B. Influenza A and B are the two main types that routinely spread in humans and cause seasonal flu epidemics. Fortunately, I had received a flu shot this season, as this can help reduce the severity of the virus.
Alas, being hospitalized ended the longest “uneventful” streak of my cancer experience. But for six glorious months, living with cancer was relatively dull and boring. And it was wonderful.
With the source of my fever identified as the flu, I was prescribed Tamiflu® (oseltamivir phosphate) and the general plan was to release me from the hospital as soon as my ANC returned to 1,000 or higher. My prior chemotherapy was given on January 30th, so its adverse effect on my blood counts should be diminishing. Patients often have their lowest number (called a nadir) and highest risk of infection around 7 to 10 days after the start of chemotherapy.
By Friday, my ANC rebounded slightly to 700. Heading in the right direction, but still below the 1,000-level needed for my release home. I felt much better than when I was admitted, which was frustrating. In fact, the fever went away as did a runny nose, sneezing, and coughing.
A repeat blood test was scheduled for very early Saturday morning, with the expectation that my ANC would finally rise above 1,000 and we’d be sent home. Or so I hoped. But the test results showed a slight decrease from the prior day to 600.
I was then given a shot of Neupogen® (filgrastim), which works like a natural protein in your body to promote the growth of new white blood cells. Interestingly, Neupogen was among the very first biotechnology products that I learned about during my introduction to the sector in the late 1990s. It was approved by the Food and Drug Administration (FDA) back in 1991.
My blood counts will continue to be monitored until the ANC improves, but sometimes it can take 24-hours to see the effect of Neupogen. And so, we wait.
In my prior post, I referenced that more and more terminal cancer patients are placing their most private, personal journeys in this entirely public, impersonal domain we call the Internet. Among the blogs about fashion, food, home design, travel, and others, numerous blogs about severe disease and dying have appeared in recent years.
Personally, I find that writing a cancer blog is cathartic – and I’ve been doing it for more than two years now. It’s a great way to share updates and information quickly and efficiently to others who are interested in your health. Blogs and participation in other online patient forums also make the experiences of cancer illness publicly visible, provide alternative voices to that of the medical expertise, and challenge the traditional patient-doctor relations. What a remarkable era for patient advocacy.
But maintaining open and honest communication with your health professionals is an essential part of the cancer patient’s care. Doctors, nurses and patients work best together when they can talk honestly and openly with one another. In this regard, it is essential that patients avoid blogging or posting anything on social media that could jeopardize this relationship. When in doubt, discuss material and images that you plan on blogging with them in advance – especially when the information pertains to participation in an ongoing clinical trial where sensitivities to confidential data may exist.
So far, healthcare professionals have embraced my public visibility. For example, I first met my incredible medical oncologist, Dr. David G. Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), in December 2015. Since that time, I published my memoir, more than 75 cancer blog posts, and three opinion editorials in various media outlets. It’s probably safe to say that I’ve been among his more “uniquely” visible patients during the past two years. But Dr. Pfister and others at MSKCC, along with my team at the National Institutes of Health (NIH), have mainly been accepting and supportive of my blog, book, and photojournalism. And, for the first time, my wife Lorie was even able to snap a quick photo of me with Dr. Pfister this week that I will treasure.
On the topic of this week’s appointment, we reviewed the CT scan results from last Friday’s imaging session. As updated briefly via social media, the results were favorable – stable disease (there were no new sites of disease, and the existing tumors stayed about the same size from the prior scan). Growth in the current tumors or new sites of disease would indicate disease progression and likely necessitate switching therapies. Since that wasn’t the case, and since I’ve handled chemo well with no neuropathy or need for growth factors, the plan is to continue with my current chemotherapy regimen. It consists of a four-week cycle starting with carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover. I’ll have two more cycles and then do another CT scan around the second week of April 2018.
After the meeting with Dr. Pfister, I started my eighth cycle of this chemo regimen and was back home by late afternoon. The purpose of this treatment is palliative – to keep the tumors in my lungs and other organs from growing to a point where they cause pain, breathing difficulty, and other issues. It is different from care to cure your illness, called curative treatment.
When treatment is palliative, some patients may feel uncomfortable asking their doctor, “How long do you think I have to live?” The truth is that this question is often awkward for doctors too. Nonetheless, it is a question on the mind of many terminal cancer patients – including me.
Every patient is different, and a statistical prognosis is just an estimate, not a firm prediction. For example, last summer I was in terrible shape (two chest tubes, progressive disease, blood clot and bleeding issues, rapid heart rate requiring a stay in the ICU, etc.). The prognosis at that time was grim, and I wasn’t expected to live more than a few months.
But, effective treatments can sometimes dramatically improve a person’s well-being and even survival. After starting chemotherapy again, cancer regressed, and both chest tubes were removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. I celebrated my birthday, Megan’s birthday, holidays, and welcomed the New Year. It’s now likely that I will be there for Lorie and Rosie’s birthdays next month and even our 26th wedding anniversary in March. I have been given additional precious time.
My disease is still likely incurable, and the current statistical prognosis indicates a median life expectancy of less than one year. I suffer from fatigue, anxiety, depression and other issues that negatively impact my quality of life. Knowing my prognosis, however, is helpful for guiding critical personal plans and life decisions.
I believe that blogging about life with a terminal illness can offer unique insights into how it is to live with cancer and to face the final phase of life. Hidden away and sequestered, removed from everyday experience, death has made a mediated return to the public sphere through digital and networked media.
The days preceding my periodic CT imaging sessions to determine if my cancer is regressing (good), progressing (bad), or unchanged are often very difficult for many other cancer patients and me. Stressing about the results won’t change the outcome, but that doesn’t stop me from mentally exploring all of the various scenarios. There’s even a term for it – scanxiety – coined by fellow cancer survivors.
I find that writing helps keep my mind occupied during periods of scanxiety. Even when I am writing about cancer, the process of organizing my thoughts or researching a topic online is a welcome distraction that helps me pass the time.
So, this morning, I decided to Google “terminal cancer blogs” to research the writings of other cancer patients. I was looking for common themes among the multitude of cancers, not just my particular diagnosis. I was also generally curious how many “other” bloggers there are like me.
The exercise started innocently enough. Within 0.54 seconds, Google informed me of the approximate 580,000 search results. I clicked on the title of the first one that caught my eye – “Terminally Fabulous.” With a positive name like that, I hoped to find an inspirational blog.
Suddenly, I was engrossed in the life of Lisa Magill, a Brisbane, Australia woman who started her Terminally Fabulous blog in February 2016, three years after being diagnosed with an incurable rare form of stomach cancer at the age of 30. Ominously, the first thing I noticed upon visiting her blog was that the most recent post was from nearly a year ago (February 24, 2017). Only by following the link to the Terminally Fabulous page on Facebook did I learn that Lisa succumbed to her disease in early March 2017 at the age of 34.
Reading previous entries on Terminally Fabulous, I appreciated Lisa’s writing – full of humor, brutal honesty, and courage. In one entry, she referenced Emma Betts, a friend, cancer survivor and inspirational fellow blogger. Through her Dear Melanoma blog, Emma (like Lisa) shared her cancer journey to help educate others about the importance of cancer awareness and protection methods needed to help prevent melanoma. My heart sunk a little more profoundly after reading the opening text of the Dear Melanoma blog: “Hi, I’m Leon, Emma’s dad. By now I’m sure you’ve heard that Emma passed away in April 2017.” She was 25.
Yes – of course, there are always exceptions (and I still “hope” to be one…). Take blogger Sophie Sabbage, diagnosed on October 13, 2014, at the age of 48 with Stage 4 terminal cancer – multiple tumors in her lungs, lymph nodes, bones, and brain. According to a recent blog post from December 22, 2017, her brain scan showed EVERY tumor had gone except for an 8mm spot. She even states that her cautious oncologist called this “fantastic.” Twice.
What I learned is that more and more terminal cancer patients are placing their most private, personal journeys in this public and impersonal domain we call the Internet. Take some time to read these brave stories and embrace their author’s vulnerability. They serve to remind ALL of us that our time on this planet is limited and some even provide inspiration to lead happy and more meaningful lives as a result.
I hope to provide an update on my CT scan results early next week, so stay tuned…
What a relief that the weather for yesterday’s periodic commute to New York for chemotherapy was much warmer than the bone-chilling, windy 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 catch up on news events. Scrolling through my Twitter feed, I came across the fact that January is Cervical Cancer Awareness Month. It 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.
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.
So, with PLENTY of room for progress in vaccinating both girls and boys against HPV, please schedule a 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 a fantastic 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 vigor. 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?
Early this morning, my youngest daughter Megan and I arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) to start round number seven of my current chemotherapy regimen (a combination of carboplatin and paclitaxel). What a fun way to welcome 2018!
Each treatment appointment is preceded by a blood test to look at the levels of various components (red blood cells, white blood cells, platelets, electrolytes, etc.). Not surprisingly, all of my counts were good enough to warrant treatment today as planned after a two-week break at the end of December 2017.
Knowing today might be a bit crazy, I had scheduled an early morning appointment to try and get ahead of any delays. We arrived a few minutes before my 7:45 am ET blood test and ended up catching the 12:20 pm ET train from New York to return home. Everything went fine with treatment, although I don’t usually start feeling the side effects for a few days.
The best news of the week was being able to spend New Year’s Eve celebrating with my wife, Lorie. Actually, “celebrating” might be a strong word–unless you expand the definition to include sitting on the couch watching Dick Clark’s New Year’s Rockin’ Eve with Ryan Seacrest and going to bed before midnight. But, we were together for yet another milestone. One that, frankly, I was quite surprised to see.
To my family, friends, colleagues, researchers, health care providers, members of the media and anyone reading this blog post–thank you for your interest in my cancer patient journey. I wouldn’t be here today without such a robust support network. Best wishes for good health, plenty of happiness, and much prosperity in 2018 and beyond to all of you!
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).
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.
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.
Yesterday marked the beginning of cycle number six for my third-line chemotherapy treatment. In this regimen, one full cycle is comprised of four weeks. During week one, two different chemotherapeutics (carboplatin and paclitaxel) are given along with the requisite premedication (steroid, anti-nausea meds, and an antihistamine). During both the second and third weeks of a cycle, I receive only one chemotherapeutic (paclitaxel) and the same premeds. Week four is a holiday/break, with no scheduled treatment that helps provide recovery time for blood counts and other markers. Then the four-week cycle repeats.
Having received five cycles over the past five months, my blood counts are slower to recover – particularly my white blood cells. As a result, my medical oncologist (Dr. David Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC)) modified the last treatment to forgo the third week of chemo since that is usually about the time that my white blood cells are on the low side. In other words, the most recent two cycles of treatment have been “two weeks on, two weeks off” meaning that I get two chemotherapeutics (carboplatin and paclitaxel) on week one, only paclitaxel on week two and then a two-week break during weeks three and four before starting the cycle over again.
Considering that the latest 2/5 cycles have been reduced in terms of the total amount of chemo I’m receiving, it is encouraging to see that each CT scan still shows decreases in the size of some tumors. For example, take the largest tumor (on my spleen) that originally measured 6.4 cm on its longest axis and 6.0 cm on its shortest axis back in early January 2017. Since starting third-line chemo over the summer, those dimensions have decreased on each subsequent CT scan: 5.4 x 4.8 cm, 3.2 x 2.6 cm and most recently 2.9 x 2.0 cm. Many other lymph nodes in my lungs and abdomen are also now 1 cm x 1 cm or smaller, which is typically the size of a “normal” lymph node—although PET imaging would help inform whether or not there is still disease activity.
But just exactly how unusual or encouraging is all of this? During the MSKCC appointment, I gathered that the general expectation would have been decreased disease from the first treatment cycle, perhaps stable disease on the second cycle and then possibly progressive disease on the third or later cycles. Bottom line: my cancer continued to decrease across all three recent scans, which is better than normally expected.
I’m happy about the results and extremely thankful that I received strong encouragement to give chemotherapy another chance. And it’s not just about tumors shrinking, there have also been meaningful improvements in my quality of life. For instance, at the start of chemotherapy I had not one but two chest tubes placed to help reduce fluid around my left lung. Both have since been removed, as the fluid buildup is gone. Associated side effects with the fluid, such as coughing and difficulty breathing have also disappeared. Oh, and it is a lot easier to shower without wrapping your chest and abdomen in plastic wrap each time to avoid water getting into the tubes!
I’m a curious person by nature and seeking potential answers as to “why” my disease is responding a bit better than expected to the current chemo regimen. As a long-time champion of immunotherapy, I can’t help but wonder about my prior second-line therapy with M7824, an experimental bispecific fully human antibody designed to simultaneously block two immuno-inhibitory pathways (both PD-L1 and TGF-β) that are commonly used by cancer cells to evade the immune system. The aim of this investigational drug is to control tumor growth by restoring and enhancing anti-tumor immune responses.
While receiving M7824 at the National Institutes of Health (NIH) as a participant in their Phase I trial, results from biopsies of both my tumor and pleural fluid provided evidence of immune system activation in the vicinity of the tumor, indicating that the experimental agent M7824 was performing as designed. In particular, the presence of tumor-reactive CD8-positive T-cells, which have emerged as the predominant effector in most cancer immunotherapy settings. In fact, one published study in head and neck cancer patients whose tumors were densely infiltrated by CD3-positive and CD8-positive T cells had a significantly longer overall survival (OS) and progression-free survival (PFS) compared with patients whose tumors were poorly infiltrated.
It’s quite possible that based on the large tumor burden in my body, the immune system activation resulting from M7824 might not have been able to overpower the disease. However, with my tumor burden now having decreased substantially through subsequent chemotherapy, I can’t help but wonder if M7824 could be playing a role in my ongoing disease improvement.
While answering this question is purely academic, it could help inform the design of future combination studies with M7824 and chemotherapy. From a personal perspective, it would also validate that I made the right decision to jump into the M7824 trial after failing first-line therapy (chemoradiation).
As someone with no formal medical training, my initial thought was to have the largest, most accessible tumor biopsied to look for residual immune system activation. Unfortunately, the largest remaining tumor is on my spleen and my oncologist frowned on the prospects of poking needles around that area. A good to time to remind readers that while I have a fair amount of working knowledge in biotech, I always rely upon the wisdom and experience of the treating physician. They’ve gone to med school…I have not.
But I do feel it is very important, to the full extent possible and without substantial added risk to me, to find some signal—even if anecdotal—that M7824 did something good. For my friends in the medical community, please feel free to email me any ideas or thoughts!
 Targeting CD8+ T-cell tolerance for cancer immunotherapy. Stephanie R Jackson, Jinyun Yuan, and Ryan M Teague. Immunotherapy. 2014 Jul; 6(7): 833–852.
 Tumour-infiltrating lymphocytes predict response to definitive chemoradiotherapy in head and neck cancer. P Balermpas, Y Michel, J Wagenblast, O Seitz, C Weiss, F Rödel, C Rödel and E Fokas. British Journal of Cancer (2014) 110, 501–509. doi:10.1038/bjc.2013.640
It was July 18, 2017 when I started my third line of treatment (carboplatin/paclitaxel) for Stage IV squamous cell carcinoma of the head and neck. Things weren’t exactly going great at the time and I remember thinking that I wouldn’t make it until my 49th birthday in November.
For example, I had two chest tubes to manage a pleural effusion (buildup of fluid in the pleural lining of the lung). My tumors were slowly growing with each CT scan. Additionally, I had an IVC filter put in to manage clots since blood thinners had caused bleeding issues. I was a mess and in-and-out of the hospital constantly.
Earlier today, however, I received my third consecutive CT scan report since starting chemo again that showed further decreases in my lung, spleen, and pleural metastases (where the cancer had spread). It looks as though the cancer continues to respond to the treatment, which is great news.
It just goes to show the perils of trying to answer the question every cancer patient wants to know: How much more time do I have left? It doesn’t stop us from asking physicians, but as a dear friend consistently points out to me – you just have to live in the moment and enjoy every day. Much easier said than done, but sage advice nonetheless.
I can’t help but wonder if our 8-month old golden retriever puppy, Humphrey, is perhaps some kind of good luck charm? We got him about a month before I started treatment and things have been going relatively well since then. Not that we need another reason to love him! He’s such a clown, always making us laugh and smile. We love all of our other pets too, but there’s just something about Humphrey that makes him special. At the very least, he’s a great therapy dog for me.
In any event, today is a very good day. It will be nice to bask in the warmth of some good news as the colder weather of the season approaches.
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!
Possibly due to my early days of computer programming and/or work creating one of the first brokerage firm websites, I recognized very early on the power of the Internet to connect people. When I first started my cancer patient blog in December 2015, it was mainly an efficient tool for me to keep family and friends updated on my health. However, I quickly realized that social media (e.g., Twitter, Facebook, Instagram, blogging) also afforded me the opportunity to provide unprecedented access to my personal experience as a terminal cancer patient. In doing so, I felt that my insight could be beneficial to others dealing with a head/neck cancer diagnosis and the effects of treatment. Importantly, I hoped that sharing my story could also help create awareness for the cause of my cancer (human papillomavirus, or HPV) and how today’s vaccines can prevent it.
Writing about my cancer experience is cathartic and that alone made all of the blog posts, Tweets, Instagram images, and Facebook entries seem worthwhile. What I didn’t expect was how my social media activities actually helped me deal with my own cancer diagnosis. Accordingly, the purpose of this blog post is to highlight some of these interactions with the hope that other cancer survivors find similar ways to derive benefits from social media.
For example, some people have a talent for making new friends. Unfortunately, not everyone is born with the gift—including me (yes, it’s true). Some side-effects associated with cancer and its treatment make this situation even more difficult. Being fatigued and depressed can lead to a lot of time being secluded in one’s own home—not working and feeling isolated and alone. The ability to meet new people and establish relationships can be enhanced through social media and other Internet activities.
In this regard, I’ve been fortunate to have met several Twitter acquaintances during their visits to the East Coast from as far as Buenos Aires, Argentina (@BursatilBiotech), the Pacific Northwest (@SheffStation), and Lenexa, Kansas (@bradloncar). Meeting individuals in person was an unexpected yet pleasant surprise in view of today’s digital communication era. Of course, it doesn’t hurt that our family’s latest animal addition, a golden retriever puppy named Humphrey, has attracted his own cult following on social media.
In late September 2017, I received an unsolicited email from fellow head/neck cancer survivor Paul Reitano. His surgical oncologist had posted a story about me on Facebook that led him to both my book and blog. Beyond our shared cancer background, we both enjoy photography and Paul wanted to include me in his personal project regarding portraits of cancer survivors. We set a date for early October when he was in town and spent the better part of a beautiful autumn day talking about common interests as he clicked the shutter on his camera. By late afternoon, we were like old friends even though we had just met. Among many excellent captures, Paul took a beautiful photo of me and my wife, Lorie, that we treasure. Aside from an array of gorgeous photos, Paul and I keep in touch and it has been great to have another head/neck cancer survivor in my life.
More recently, I had the pleasure of connecting with another head/neck cancer survivor, Jason Mendelsohn, through social media. Jason was recently the subject of a NBC news segment reporting on the silent epidemic of HPV-related cancers among men. Like me, Jason is determined to help others by sharing his story and experience through his blog.
Another unexpected benefit from social media is the support from reporters and related contacts I’ve developed throughout my career or who have recently covered my cancer story. One of the more memorable experiences was when @adamfeuerstein dedicated his 2017 Pan-Mass Challenge (PMC) ride to me as a token of his support over the summer. PMC raises money for life-saving cancer research and treatment at Dana-Farber Cancer Institute through an annual bike-a-thon that crosses the Commonwealth of Massachusetts. Through social media, I’ve also been fortunate to make several new media connections, such as @BiotechSusan, editor of BioCentury, and @JohnCendpts, co-founder of Endpoints News, among many others.
Social media can also be a means for health education and public messaging. Through Tweets and sharing articles, I’ve enjoyed being able to help correct the popular misconception that HPV vaccination is only for girls and cervical cancer. Creating awareness about HPV’s link to six different cancers and the proven safety/benefits of HPV vaccination for both boys and girls is one of my personal goals, which has been enhanced through my participation in social media.
The role for social media in cancer care is embryonic and evolving, but my experience thus far suggests that there are many potential benefits. There are, of course, certain challenges, not the least of which includes the potential for sharing inaccurate medical information and the lack of privacy and confidentiality when discussing deeply personal situations.
As an example of both, one need look no further than Michael Douglas’ revelation in 2013 that his cancer may have been caused by performing oral sex has and the resulting embarrassment caused to his wife, Catherine Zeta-Jones. In fact, only a few studies have looked at how people get oral HPV, and some show conflicting results. Some studies suggest that oral HPV may be passed on during oral sex (from mouth-to-genital or mouth-to-anus contact) or open-mouthed kissing; others do not. The likelihood of getting HPV from kissing or having oral sex with someone who has HPV is not known. According to the Centers for Disease Control and Prevention (CDC), more research is needed to understand exactly how people get and give oral HPV infections.
Perhaps the world just wasn’t ready to hear about the links between oral sex, HPV and head/neck cancer at the time, but fast forward to today and Michael Douglas’ story may have helped create greater awareness and a sense of urgency to better treat and prevent what is becoming the one type of oral cancer whose numbers are climbing, especially among men in the prime of their lives. The world could use more support from celebrities affected by HPV and cancer to further increase awareness and/or raise research funds for new treatments and diagnostics.
In view of growing use, researching and defining the role for social media in cancer care represents an important area of unmet need. Certainly, this is a subject that merits further investigation and could be an interesting workshop at an upcoming major medical conference, such as the American Society of Clinical Oncology (ASCO) annual meeting. In the meantime, thank you to ALL of my social media connections who help make the world seem a bit smaller and a whole lot brighter!