Train Pain

Last night, we boarded the 6:02 pm New Jersey Transit train to New York for the first of five radiation treatment sessions at Memorial Sloan-Kettering Cancer Center (MSKCC). My appointment was scheduled for 8:45 pm, so we left plenty of extra time for the unexpected. I had my walking cane, pain medications, and most importantly my wife, Lorie, for support.

As the train departed Trenton station, I noticed the engines ran for only a short time before we began merely coasting. Eventually, the conductor announced over the PA system that our train wasn’t working properly and we’d be returning to Trenton to transfer to another train. No worries, we still had plenty of time. Or so we thought.

Arriving at Secaucus, the last station stop before our destination (New York Penn Station), we were asked to change trains again. This time, due to a derailed train blocking one of only two open tunnels to the city. No estimate for when traffic would be allowed in and out of New York Penn Station again.

Lorie phoned MSKCC to inform them that we were going to be late for my appointment. Their correct response—”just get here safely, we’ll be waiting.”

We briefly disembarked from the train in search of a taxi or Uber to drive the balance of the trip from Secaucus. After being told there was at least an hour wait for alternate transportation, we returned to the train and awaited more information.

Around 9:10 pm, MSKCC called my cell phone for a status update and estimated time of my arrival. Fortunately, the train started moving at that very minute. My best guess was that it would be another thirty minutes before arriving at MSKCC—assuming no other delays. If it was going to be more than an hour, however, MSKCC suggested rescheduling.

At Penn Station, Lorie (aka—momma bear) ran ahead to grab a cab as I hobbled behind with my cane. Sitting is among the most uncomfortable positions for my back at the moment. And three hours of sitting on the train was not what I needed.

In all of my years going to NYC, I’ve never asked a cab driver to get me to a destination as quickly as legally possible. That is, until last night. Lorie relayed our travel situation, my cancer prognosis, and that we were running very late for treatment. The compassionate cabby made terrific time (earning a big tip!), and we arrived at MSKCC around 9:40 ET.

Radiation treatment was uneventful, and everyone at MSKCC was delightful despite the fact I was late and the last patient of the night. However, towards the end of the radiation session, my pain level was increasing. The result of sitting for hours on the train and now being flat on my back for 45-minutes.

Michael Becker standing on the train home after midnight (more comfortable than sitting). The expression on my face says it all-photo by Lorie.

Late at night, the trains don’t run express. We caught the 12:14 am local train home. I stood during most of the ride since it was a more comfortable position. We arrived back in Trenton to get our car around 2 am. Home, washed up, and in bed by 3 am. A long day to say the least!

Radiation therapy for bone metastases is associated with limited side effects. However, I knew from my background with radiopharmaceuticals that a pain flare, or transitory aggravation of bone pain after treatment, can occur in 2% to 40% of patients. The exact cause of the pain flare is unknown. It has been suggested to arise through temporary inflammation of the irradiated bone resulting in nerve compression or the release of inflammatory cytokines. Dexamethasone, a steroid, has shown potential for preventing and treating pain flares. This medication was added to my opioid pain treatment arsenal and appears to be helping already.

We go back to MSKCC this evening for my second treatment session. Hopefully, our commute will be less eventful this time! Then I get a break over the weekend before my final three radiation treatments Mon-Wed next week.

Thank goodness it’s Friday!

Up to Eleven

Late last month, I experienced severe pain in my left hip/buttock that warranted a trip to the urgent care facility at Memorial Sloan-Kettering Cancer Center (MSKCC). With random movement, a sharp, electric-like pain radiated down my left leg. It was like nothing I’ve experienced before. Lying down on my right side made the pain better, but sitting or climbing stairs was unbearable.

During my stay at urgent care, an x-ray of my pelvis showed no evidence of fracture. There was also no indication that cancer had spread to that area, which was naturally my initial concern.

While waiting to see the doctor, I was given a non-steroidal anti-inflammatory drug (NSAID) called ketorolac via intravenous infusion to help address the pain. It worked so well that I was later released. The pain was attributed to an inflammatory condition, possibly bursitis according to the discharge papers.

Since the cancer wasn’t responsible for my pain, I was instructed to follow up with a local orthopedist for further evaluation and treatment. In the meantime, I found it unusual that oral NSAIDs and even narcotics like oxycodone failed to address my growing pain.

An x-ray of my spine was taken by the orthopedist, which also came back normal. I was prescribed physical therapy for 4-6 weeks and a steroid regimen to help address inflammation that was possibly putting pressure on my sciatic nerve. I required a walking cane, as it felt like my left leg was going to collapse every time I experienced a bolt of pain.

Completing the steroid regimen and two weeks of physical therapy, I was feeling only marginally better. During a follow-up appointment with my orthopedist, I received a steroid injection directly into the left sacroiliac (SI) joint region. I was told pain relief could take a few days, for which I anxiously awaited.

At this point, I was due for a periodic CT scan of my chest, abdomen, and pelvis at MSKCC. It would reveal how cancer responded to the recent stereotactic body radiation therapy (SBRT) directed to three areas—a lesion in each lung and also my spleen. It was hoped that the SBRT would decrease the size of targeted tumors in the lungs enough to alleviate a nagging cough that I developed.

Given the unique pain I was experiencing, thoughts of cancer progression still swirled in my mind. Bone is the third most common site for the spread of cancer, with half or more of patients diagnosed with cancer experiencing bone pain.

Coincidentally, I became quite familiar with pain arising from metastatic bone disease (MBD) during my tenure as CEO of Cytogen Corporation. The company had developed and commercialized Quadramet®—an injectable radiopharmaceutical used to treat bone pain associated with cancer.

Pain from MBD results from bone destruction and fragility. A pain scale measures a persons pain intensity based on self-report, with pain levels between 0 (pain-free) and 10 (pain that makes you pass out). Since late August, my daily pain went from a low of 5 at rest up to 11 with movement (“Up to eleven” coined in the 1984 movie This Is Spinal Tap).

Since I was scheduled to travel to MSKCC for the CT scan, I asked my treatment team if an MRI of my spine made sense to plan for that same day. I couldn’t help but think the severe pain was caused by cancer progression to bone. They agreed, and both imaging procedures were scheduled for September 19, 2018.

Meanwhile, after completing oral steroids, two weeks of physical therapy, a steroid injection, and walking with a cane, my resting pain level slightly improved. Regretfully, I second-guessed my request for an MRI of my spine due to the modest pain improvement and canceled that appointment after consulting with my treatment team.

The day of the CT scan, my pain was back to full force. I knew that I couldn’t hold still long enough to complete the CT scan. It took 10 mg of oxycodone to sedate me and alleviate my pain just enough to get through the 10-minute procedure.

Yesterday, Lorie and I reviewed the CT scan results with my oncologist at MSKCC, Dr. David Pfister, and Nicole Leonhart, ANP, RN. My cough disappeared, so I was very confident that the inferior left hilar node decreased in size following SBRT. The radiology report confirmed that it declined from 1.3 cm x 1.3 cm on the prior scan to 0.6 cm x 0.6 cm.

Unfortunately, that was the only good news contained in the CT scan results. While the tumor on my spleen also received radiation, it nearly doubled in size from 4.0 cm x 2.7 cm to 7.4 cm x 5.1 cm. Could this be inflammation following the radiation treatment, or did it genuinely represent tumor growth? No one could be sure based merely on imaging.

Figure 1. Vertebral body

Our hearts sunk as the discussion turned to the suspicious new lesions found on my spine. Specifically, the L5 and T7 vertebral bodies—spool-shaped structures that constitute the weight-bearing portion of a vertebra (see Figure 1). Most spine tumors are metastatic, representing the spreading of cancer from a different part of the body. Unfortunately, metastatic or primary tumors, trauma, and infection are prominent pathologies of L5.

Figure 2: MRI images showing the location of cancer spread to the spine (dark areas near arrows). Click to enlarge.

Correlation of the findings using an MRI was needed. Immediately, I regretted second-guessing my decision to get an MRI done while in town for the CT scan last week. Amazingly, I was able to get an MRI done the same day of my appointment at MSKCC. The results confirmed that cancer had now spread to my T7, L5, T5, and S2 vertebral bodies (see Figure 2).

When cancer spreads to the spine, it can replace your bones or compress your nerves, resulting in compression fractures, pain, and reduced blood supply to the spinal cord. Fortunately, cancer has not yet contacted my spinal cord. Otherwise, I would likely have been admitted for emergency spinal surgery. Spinal cord compression needs to be treated right away to try to prevent permanent damage to the spinal cord.

The good news, if there is any, is that radiation therapy provides excellent relief for painful bone metastases and retreatment is safe and effective. Within a week or so, I will undergo both mapping and radiation treatment for the painful spine metastases. In the majority of patients, radiation therapy can provide substantial pain relief.

Figure 3: Michael Becker’s disease and treatment milestones. Click image to enlarge.

After finishing my third cancer treatment in March 2018 (nine months of combination chemotherapy—carboplatin and paclitaxel), I decided to take my first treatment break after being diagnosed (see Figure 3). As I had hoped, the past six months were precisely what I needed and left me feeling refreshed and reenergized.

Assuming my bone pain is addressed, I’m faced with the option of pursuing novel therapies or merely continuing my treatment hiatus. For example, I have not yet been exposed to cetuximab, a biologic agent that blocks the epidermal growth factor receptor (EGFR) and is FDA approved for the treatment of metastatic colorectal cancer, metastatic non-small cell lung cancer, and head and neck cancer. Alone or in combination with an investigational agent, cetuximab could be a viable treatment option that doesn’t negatively impact my quality of life in the same manner as chemotherapy.

As soon as I get past the bone pain issue, I plan on meeting with Dr. Pfister to continue hearing his thoughts on potential next steps that could achieve my goal of maintaining a decent quality of life while still pursuing active treatment. To be continued…

Cancer Epidemic Among Males

It’s a common misperception that the human papillomavirus (HPV) vaccine is intended only for females. However, new data makes it alarmingly clear why both boys and girls should receive this critical cancer-preventing vaccination.

What replaced cervical cancer as the most common cancer associated with HPV infection in the United States? Oropharyngeal (head/neck) squamous cell carcinoma (SCC) in men, according to the August 24, 2018 edition of the Morbidity and Mortality Weekly Report (MMWR) by the Centers for Disease Control and Prevention (CDC).

Figure 1: Adapted from CDC’s Morbidity and Mortality Weekly Report (MMWR) / August 24, 2018 / 67(33);918–924

From 1999–2015, cervical cancer incidence rates decreased by 1.6% per year on average, going from 13,125 in 1999 to 11,788 in 2015. During this same period, oropharyngeal SCC incidence rates increased by 2.7% per year on average among men, more than doubling from 6,966 in 1999 to 15,479 in 2015. See Figure 1.

The decline in cervical cancer from 1999 to 2015 is the continuation of a favorable trend since the 1960s when cervical-vaginal screening increased significantly as Americans endorsed the Pap test. The incidence of cervical cancer plummeted from 21.6 per 100,000 women in 1969 to 10.4 per 100,000 in 1990. According to the latest CDC report, the rate of cervical cancer further declined to 7.2 per 100,000 women in 2015.

Early detection through routine screening has reduced the death rates from cervical (via Pap test), breast (via mammogram), and other cancers. Currently, there is no routine screening test for HPV-associated diseases other than cervical cancer. Oral dental screening may detect cancer or precancerous lesions that may lead to oropharyngeal SCC at an early stage. However, it is difficult to determine from a visual examination which abnormal tissues in the mouth are worthy of concern. The average person routinely has conditions existing in their mouths that mimic the appearance of pre-cancerous changes, which could lead to unnecessary biopsies and invasive testing.

Figure 2: Adapted from CDC’s Morbidity and Mortality Weekly Report (MMWR) / August 24, 2018 / 67(33);918–924

To prevent HPV-related cancers and other ailments, HPV vaccination was added to the routine immunization program for US females in 2006 and the program for US males in 2011. See Figure 2. But as of 2017, only 49 percent of adolescents (53.1% of females; 44.3% of males) received all the recommended doses to complete the HPV vaccination series. That is less than a 5% increase from 2016 when 43.4% of adolescents (49.5% of females; 37.5% of males) were up to date with the HPV vaccination series.

The combination of comparably lower vaccination rates with a lack of screening tools is helping fuel the oropharyngeal SCC epidemic among males. Continuing at its current growth rate, the annual new cases of oropharyngeal SCC in men could reach 17,685 by 2020 and 20,204 by 2025.

The CDC estimates that nearly 80 million Americans are currently infected with some type of HPV, with about 14 million people newly infected each year. If your preteen (boys and girls) hasn’t been vaccinated against this cancer-causing virus yet, talk to their doctor or nurse about getting it for them as soon as possible and please read my passionate plea to parents of preteens.

 

 

Update: Stereotactic Body Radiation Therapy (SBRT)

In my prior post, I discussed a worsening cough and recommendation from my oncologist, Dr. David Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), to consider stereotactic body radiation therapy or SBRT. This treatment is designed to deliver extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue.

My radiation oncologist, Dr. Nancy Lee at MSKCC, developed a treatment plan using SBRT to target single tumor sites in each of my lungs and spleen. Starting with my left lung, the first treatment took place Monday, July 23, 2018, and continued on Wednesday and Friday of that same week. The same schedule was used the following week for my right lung. A single SBRT session was used to target the lesion on my spleen, which was completed last Wednesday, August 15, 2018.

The unit for radiation measurement of absorbed dose is “gray” (Gy). I received a total of about 27 Gy to each lung site (9 Gy per session / 3 sessions) and about 9 Gy to my spleen in a single session. In contrast, I received about 70 Gy to my head/neck over the course of 7 weeks back in early 2016 as part of my conventional chemoradiation treatment.

With SBRT, only a small area of your body is exposed to radiation. This means that SBRT usually causes fewer side effects than other types of radiation therapy. According to patient education materials provided by MSKCC, about half of the people who have SBRT don’t have any side effects from treatment.

So far, the SBRT “experience” has been exactly as billed. Other than post-traumatic stress from going through the radiation procedure again, along with some mild fatigue, I haven’t experienced any significant side effects from SBRT. Encouragingly, my cough has already diminished both in frequency and severity. So, the radiation is likely doing its job of shrinking tumors that may be obstructing my airway.

Towards the end of September, I’ll have another CT scan to see how the radiated (and non-radiated) tumors responded to the SBRT. Radiation can cause inflammation in the short-term, which hampers the interpretation of scan results. Accordingly, it is prudent to wait at least a month before imaging.

Until then, I’m continuing my human papillomavirus (HPV) awareness activities and encouraging vaccination of preteen boys and girls to help prevent six cancers linked to HPV. Sadly, there is still a lot of room for improvement in vaccination rates.

In 2017, nearly 49 percent of adolescents received all the recommended doses to complete the HPV vaccination series according to a new study. This is less than a 5% increase from 2016 when 43.4% of adolescents (49.5% of females; 37.5% of males) were up to date with the HPV vaccination series. Today, 51 percent of adolescents still have not completed the HPV vaccine series!

To be meaningful, HPV vaccination rates need to be closer to the Centers for Disease Control and Prevention’s (CDC) Healthy People 2020 target of 80 percent coverage. This isn’t unrealistic, as 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.

Parents, I beg you again—please vaccinate your children against HPV.

Radioactive

As I compose this post, I cannot get the 1985 song “Radioactive” by English rock band The Firm out of my mind. But perhaps this will make more sense in a moment.

At the end of June 2018, I announced my intent to remain off cancer treatment. A decision so complex that it couldn’t be adequately addressed in a blog post. Simply put, after going through three very difficult therapies from 2016-2018, I decided to emphasize the quality of life over quantity of life.

My last palliative systemic treatment consisted of nine cycles/months of combination chemotherapy (carboplatin and paclitaxel). For a while, it significantly reduced the size of tumors in my lungs and spleen. Most importantly, it prolonged my life—and for that, I am very grateful.

But most cancer treatments are associated with toxicities, which can range from mild to severe. For example, my initial treatment consisted of daily radiation to my head/neck in combination with chemotherapy and was brutal with regard to side effects. In exchange for these toxicities, however, chemoradiation offered the “potential” for a cure at the time. It seemed like a fair trade.

Once my disease spread (metastasized) to distant sites, including my lungs and spleen, the intent of treatment switched from curative to palliative—providing relief from disease symptoms and helping me live longer. Accordingly, I became less willing to endure the side effects of palliative systemic treatment (chemotherapy, cetuximab, etc.) with cure no longer a likely option. This largely resulted in my decision to discontinue treatment.

However, I discussed my worsening cough during a recent appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN. Absent chemotherapy, the tumors in my lungs continue to grow and create additional problems—chronic coughing, wheezing, shortness of breath, etc. To address my cough, Dr. Pfister introduced the concept of stereotactic body radiation therapy, or SBRT, to deliver extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue.

For more than a century, radiotherapy has been an effective treatment for cancer patients. But the new millennium saw the affirmation of SBRT, especially for the treatment of metastatic tumors. In fact, select patients with limited metastases treated with SBRT are long-term survivors.

During a follow-up appointment with my radiation oncologist, Dr. Nancy Lee at MSKCC, she informed me that SBRT is associated with fewer side effects than the conventional radiation therapy I received as part of my initial treatment back in 2016. Conventionally fractionated radiation involves low-dose fractions given once a day (e.g., 10–30 fractions of 1.8–3 Gy each), while SBRT involves giving smaller numbers of higher-dose fractions (e.g., 1–5 fractions of 6–30 Gy each). Accordingly, SBRT can usually be given in five or fewer daily sessions within a week. Fast, safe, and effective—there was a lot to like about SBRT.

SBRT involves the use of sophisticated image guidance that pinpoints the exact three-dimensional location of a tumor so that the radiation can be more precisely delivered to cancer cells. Adverse events associated with SBRT can include pneumonitis, cough, pain, esophagitis, and dermatitis. However, severe toxicities (Grade 3 and 4) are fairly uncommon, occurring in 5% to 10% of patients after SBRT.

Possibly due to my background working with radiopharmaceuticals, I’ve long been interested in the role of radiation therapy beyond its cytotoxic effects. Radiation therapy interacts with cancer and immune system through a variety of mechanisms. It promotes the release of tumor neoantigens during cancer cell death in addition to stimulating immune adjuvant effects, engaging the two key arms of the immune system and functioning like an in situ vaccine, generating tumor-specific T cells.

In fact, localized radiation can infrequently trigger systemic antitumor effects, called the “abscopal effect.” Recent studies presented at ASCO 2018 have explored SBRT in combination with checkpoint inhibitors to potentially improve the abscopal effect with mixed results.

In one study, cancer patients were treated with SBRT and at least 1 cycle of pembrolizumab. Results of the study showed an abscopal response defined by 30% reduction in any single non-irradiated measurable lesion was present in 27% of patients, but only 13% of patients when defined by a 30% reduction in aggregate diameter of non-irradiated measurable lesions. It is difficult from these data to separate out whether the effects seen were because of the combination or from SBRT alone.

In another study, head/neck cancer patients with at least two measurable lesions were randomized to either nivolumab alone for 2 cycles or nivolumab with SBRT to a single lesion (9 Gy x 3) between the 1st and 2nd doses of nivolumab. While safe, the addition of SBRT to nivolumab failed to improve objective response rate (ORR), progression-free survival (PFS), or overall survival (OS).

For now, a treatment plan was developed using SBRT to target tumor sites in each of my lungs. Starting with my left lung, the treatment takes place Monday, Wednesday, and Friday of this week. The same schedule will be used next week for my right lung. For reasons still unclear, questions remain regarding the use of SBRT to also target the lesion on my spleen.

Yesterday was my first SBRT session. Lorie stopped me for a quick kiss before I disappeared into the men’s locker room at MSKCC to change clothes. It was traumatic to see the same rooms and equipment from my prior chemoradiation experience. And while my body needs to be kept in the same position for each treatment, thankfully this is accomplished through the use of a mold of my back instead of being pinned to the table by a face/shoulder mask like last time.

The SBRT session was quick and painless. I thought readers might enjoy seeing what the process is like, so embedded in this post is a brief time-lapse video of me holding still on the table in my shorts and shoes as the linear accelerator components twirl around me.

I’ll update the blog with any significant updates on my SBRT experience. For now, I’m simply hoping to get some relief from coughing.

A Passionate Plea to Parents of Preteens

Adults can make informed decisions about their own medical care. However, young children are not able to make complex decisions for themselves, so the authority to make medical decisions on behalf of a child usually falls to the child’s parents. Some of these choices have long-lasting repercussions that cannot be undone later in life.

Whether or not to vaccinate against preventable diseases is one such decision parents will face. Supported by high-quality medical and scientific evidence, vaccines are one of the most significant achievements of medical science and public health. Deaths due to vaccine-preventable diseases, including smallpox, polio, measles, diphtheria, pertussis, and others, have declined dramatically.

Debunking popular misconceptions about every vaccine is beyond the scope of this article. Instead, my focus is on the human papillomavirus (HPV) vaccine, one of the most heavily-scrutinized vaccines of all time, and one of the safest. It is also an essential vaccine that can help prevent six different cancers which may develop much later in life.

For the nearly 80 million people—about one in four—currently infected in the United States, HPV often 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. In these individuals, HPV can cause changes in the body that can lead to the development of:

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

Unlike HIV and other sexually transmitted diseases (STDs) spread via bodily fluids, human papillomaviruses reside in certain skin cells found in the moist surfaces (called mucosal surfaces) of areas such as the vagina, anus, cervix, vulva, inner foreskin and urethra of the penis, inner nose, mouth, throat, and the inner eyelids.

HPV is transmitted by direct contact with an infected person, usually sexual, but can occur following nonpenetrative sexual activitywhich even includes kissing. While condoms are highly effective in preventing HIV and other STDs transmitted through bodily fluids, they provide less protection against STDs spread through skin-to-skin contact like HPV.

Celebrities, charlatans, homeopaths and other people who are entirely unqualified to advise on medical issues promote genuinely heartbreaking images and stories of teenagers suffering paralysis, bodily pain, convulsions, and even death, which they attribute to autoimmune disorders directly caused by HPV vaccination. It’s a natural claim to make. After all, a vaccine, by its nature, is designed to provoke an immune response.

Sadly, autoimmune disorders are pervasive and affect ∼8% of the population, the vast majority (78%) of whom are women. These occur when the immune system goes awry and mistakenly attacks healthy parts of the body rather than infectious invaders such as bacteria and viruses.

Scientists believe that sex hormones may play a role, as many autoimmune disorders occur in women soon after puberty. Some examples include systemic lupus erythematosus (lupus), postural orthostatic tachycardia syndrome (POTS), Guillain-Barré syndrome, and complex regional pain syndrome (CRPS). My heart breaks for anyone affected by these terrible diseases, especially children.

The Centers for Disease Control and Prevention (CDC) recommends that BOTH girls and boys begin getting the HPV vaccine series at age 11 or 12. This is because the vaccine produces a better immune response at this age than during the teenage years. For the HPV vaccine to work best, it is also essential to administer prior to coming into contact with the virus. That’s why the vaccine is recommended for children before they grow up and start kissing or become sexually active.

Because autoimmune disorders are more common in women and begin to appear around the age that they receive the HPV vaccine, the potential to use autoimmune disorders to discredit the vaccine is high. In statistics, when two variables are found to be correlated, it is tempting to assume that one variable causes the other. However, this is a perfect example that correlation does not imply causation.

According to the World Health Organization (WHO), since licensure in 2006, over 270 million doses of the HPV vaccine have been distributed worldwide, with many countries monitoring vaccine safety post-licensure. A 2017 report by the Global Advisory Committee on Vaccine Safety (GACVS) concluded that HPV vaccines are extremely safe and found no evidence to suggest a causal association between HPV vaccine and CRPS, POTS or the diverse symptoms that include pain and motor dysfunction.

Why am I so passionate about HPV vaccination? Because I was diagnosed with Stage IV oropharyngeal (head and neck) cancer caused by HPV in December 2015 at the age of 47. After undergoing aggressive chemoradiation treatment, I was cancer-free for six months. Then, in December 2016, doctors discovered distant metastasis (spread) in both of my lungs. Recurrence of this disease is often lethal—no effective treatment exists.

Had the HPV vaccine been available when I was a preteen, I could have been spared a terminal disease and the numerous toxicities of cancer treatment. Parents, I beg you—please vaccinate your children against HPV. Believe in high-quality medical and scientific evidence, not social media anecdotes. Instead of speaking to well-meaning relatives and friends, talk to a knowledgeable pediatrician about the HPV vaccine and make an informed decision. Follow Australia’s example, where the HPV vaccination program is so successful that within 10 years, it is expected that no women will develop cervical cancer there. In doing so, we can eliminate high-risk HPV and the resulting six cancers.

The Art of Dying

Last week, I underwent my first CT scan since stopping chemotherapy in March 2018. It would have been surprising for the tumors in my lungs and spleen to remain unchanged in size during this period. Nonetheless, I admit to secretly hoping that there was little or no growth.

Instead, all of my existing tumors roughly doubled in size. In my lungs, several nodules that measured one centimeter in diameter are now two centimeters. Cancer in my spleen grew from two centimeters to four centimeters.

A few new spots also appeared. In particular, in the mediastinum and thoracic nodes near the heart, thymus gland, windpipe, and large blood vessels.

In other words, cancer resumed its growth in the absence of chemotherapy.

However, with a taste of life without the toxic effects of chemo – I don’t want to go back. A point that I made in the recent Forbes article and video The Art of Dying.

In keeping with that theme, I’ve decided to remain off treatment. The obvious result is that cancer will continue to grow unabated. It wasn’t an easy decision, and it wasn’t made in a vacuum.

During today’s appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, we discussed a lot of topics: How quickly will my disease progress? When will my quality of life diminish? How long until I die?

All valid questions, but each very difficult to answer. I already witnessed the perils of making such predictions last summer when I didn’t expect to see my 49th birthday. And yet, here I am – having just enjoyed the best several months since first being diagnosed in late 2015.

When my treatment changed from curative to palliative intent, I knew that cancer would likely claim my life. It didn’t stop me from living. In fact, in many ways it made me appreciate life even more.

Some readers will offer battle/combat analogies. “You can still beat this.” “Keep fighting.” “Don’t give up.”

Fighting words may help some people, but I prefer to embrace acceptance. My patient advocacy efforts, such as raising awareness for the human papillomavirus (HPV) and various cancers it can cause (including mine…), are not made more or less successful based on my disease outcome.

Throughout my life, I did things my way (cue Frank Sinatra). And I don’t plan on changing that now. I feel good and plan on enjoying it for as long as it lasts. Quality, not quantity, of life, is what matters most to me now.

Eventually, my disease will progress and pose a problem. But not today or perhaps even tomorrow. So, until then, I’m going to continue savoring experiences and my remaining time. I’ve had a fantastic life and will continue to greet each new day as a gift.

Life’s a Beach

Last summer I was in terrible shape. I had not one, but two chest tubes to drain fluid from my left lung. My disease was progressing with each CT scan. I was contending with a newly discovered blood clot and bleeding issues from the corresponding medication. Also, a rapid heart rate required a brief stay in the ICU. The prognosis at that time was grim. In fact, if someone told me at the time that I’d still be here this summer—I wouldn’t have believed them.

However, after starting combination chemotherapy, my cancer regressed (still present, but smaller). Both chest tubes were eventually removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. An inferior vena cava (IVC) filter, a medical device, was implanted into my inferior vena cava to catch blood clots and stop them from moving up to the heart and lungs.

After finishing my ninth cycle/month of combination chemotherapy (carboplatin and paclitaxel), I decided to take a treatment break in March 2018 at the suggestion of my oncologist. With each passing day, my energy and appetite have improved. Today, I almost look and feel “normal” for the first time since beginning treatment back in early 2016.

But this coming week marks my periodic CT scan to see how my disease has behaved (or not) without any treatment during the past few months. Understandably stressful and causing me great anxiety (scanxiety), I’ve had four migraines in a little over one week. Uncharacteristic enough in frequency to warrant a trip to the emergency room, but an MRI of my head showed everything was fine. Or, “f.i.n.e.” as far as my brain goes! (A reference to rock band Aerosmith’s acronym “Fucked Up, Insecure, Neurotic, and Emotional”)

For me, distractions are key during periods of scanxiety. So, my youngest daughter, Megan, and I spent the day at the shore (Ocean Grove Beach, NJ) on Friday. We’re the only two members of our immediate (and very pale) family who truly enjoy going to the beach. It was my first trip there since before being diagnosed in 2015!

However, more fun than the sun, sand, and sea were the impromptu singing sessions in the car ride there and back. Since they were young, I’ve exposed both our daughters to a wide variety of music. I’m proud they still know the words and can sing along to diverse artists such as Johnny Cash, The Beatles, Guns N’ Roses, Van Halen, and many others. I cannot carry a tune in a bucket, but Meg has a decent singing voice.

The perfect ending to the day, I barbequed burgers for Lorie and me after arriving home late that afternoon. School is still in session, so she had worked a full day. It was quite a feast – fresh sweet corn, baked beans, and chips. Preparing a meal for her was nice for a change.

I’ve lost count of the fantastic times that I’ve experienced during my recent treatment break. But yesterday was one that will stand out for quite some time. It was a darn good day!

After this week’s CT scan and subsequent radiology report, I’ll post another blog update. So, stay tuned.

Suicide in Head and Neck Cancer Survivors

During a recent speaking engagement, there was an audible gasp from the crowd as I relayed a startling statistic from the 2018 Cancer Survivorship Symposium: The mortality rate due to suicide in head and neck cancer patients is more than double the suicide rate of the most common other cancers in the United States.[1] Only male pancreatic cancer survivors have a higher suicide ratio. (see Figure 1)

Figure 1: Click to enlarge. Adapted from – Osazuwa-Peters N, Simpson MC, Zhao L, et al: Suicide risk among cancer survivors: Head and neck versus other cancers. 2018 Cancer Survivorship Symposium. Abstract 146. Presented February 17, 2018.

In the general population, suicide is already one of the ten leading causes of death in the United States.[2] The recent deaths of fashion designer Kate Spade and chef Anthony Bourdain only heighten concerns of “suicide contagion” among mental health experts who fear that vulnerable youth are susceptible to the influence of reports and portrayals of suicide in the mass media.[3]

Following a period of nearly consistent decline from 1986 through 1999, suicide rates in the United States have increased almost steadily from 1999 through 2014.[4] The average annual percent increase in the age-adjusted suicide rate was about 1 percent per year from 1999 through 2006 but rose to 2 percent per year from 2006 through 2014.

Coincidentally, on January 9, 2007, Apple first introduced the iPhone[5] and the percentage of the United States population using any social media soared from 24 percent in 2008 to 67 percent in 2014.[6] In a study published in November 2017 in Clinical Psychological Science, Jean Twenge, a psychologist at San Diego State University, correlates the increasing use of social media, gaming and internet browsing with rising symptoms of depression and suicidal behaviors in teenagers.

One particular at-risk group are cancer survivors, who have nearly twice the incidence of suicide compared with the general population.[7] And patients with head and neck cancer have more than three times the prevalence of suicide compared with the general population.

Depression and hopelessness are the strongest predictors of a desire for death among terminally ill cancer patients.[8] Despite the impact of depression on people with cancer, available studies to assess the efficacy, tolerability, and acceptability of antidepressants for treating depressive symptoms in adults with cancer (any site and stage) are very few and of low quality.[9]

However, there are several other factors than depression that could drive a cancer survivor into suicide. This is especially true for head and neck cancer survivors who deal with unique physical, social, and emotional issues after their treatment.

Significant psychosocial distress in patients with head and neck cancer throughout their illness is well-documented. Depression, suicidality, posttraumatic stress disorder (PTSD), substance dependence/abuse, issues with body image, self-confidence, interpersonal relationships, social stigma, and loss of work and productivity almost universally afflict those with head and neck cancer in some combination.[10]

In one study, hypopharyngeal, laryngeal, and oral cavity and/or oropharyngeal cancers were associated with the highest rates of suicide.[11] Increased rates of tracheostomy dependence – a surgical procedure to create an opening in the neck for direct access to the trachea – and difficulty swallowing and/or feeding tube dependence in these patients may help explain the higher rate of suicide observed. The impact of newer technologies with reduced side-effects, such as transoral robotic surgery (TORS) and intensity-modulated radiation therapy (IMRT), have not yet been investigated.

More than 15 million individuals in the United States are currently living with a cancer diagnosis, 430,000 of whom are head and neck cancer survivors.[12] Many of these patients will experience distortions of voice, hearing, taste, chewing, swallowing, and breathing for decades after successful treatment. Although a relatively rare event, additional research and effort should be devoted to the psychological toll that cancer, treatments, and resulting morbidity have on patients to help prevent more suicides in the future.

References

[1] Osazuwa-Peters N, Simpson MC, Zhao L, et al: Suicide risk among cancer survivors: Head and neck versus other cancers. 2018 Cancer Survivorship Symposium. Abstract 146. Presented February 17, 2018.

[2] Heron M. Deaths: Leading causes for 2013. National vital statistics reports; vol 65 no 2. Hyattsville, MD: National Center for Health Statistics. 2016.

[3] Gould M, Jamieson P, Romer D. Media Contagion and Suicide Among the Young. American Behavioral Scientist, Vol. 46 No. 9, May 2003 1269-1284.

[4] Curtin SC, Warner M, Hedegaard H. Increase in suicide in the United States, 1999–2014. NCHS data brief, no 241. Hyattsville, MD: National Center for Health Statistics. 2016.

[5] Apple press release January 9, 2007. https://www.apple.com/newsroom/2007/01/09Apple-Reinvents-the-Phone-with-iPhone/

[6] Statista. Percentage of U.S. population who currently use any social media from 2008 to 2017. https://www.statista.com/statistics/273476/percentage-of-us-population-with-a-social-network-profile/

[7] Anguiano L, Mayer DK, PivenML, Rosenstein D. A literature review of suicide in cancer patients. Cancer Nurs. 2012;35(4):E14-E26.

[8] Breitbart W, Rosenfeld B, Pessin H, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA. 2000;284(22):2907Y2911.

[9] Ostuzzi G, Matcham F, Dauchy S, Barbui C, Hotopf M. Antidepressants for the treatment of depression in people with cancer. Cochrane Database Syst Rev. 2018 Apr 23;4:CD011006.

[10] Smith JD, Shuman AG, Riba MB. Psychosocial Issues in Patients with Head and Neck Cancer: an Updated Review with a Focus on Clinical Interventions. Curr Psychiatry Rep. 2017 Sep;19(9):56.

[11] Kam D, Salib A, Gorgy G, Patel TD, Carniol ET, Eloy JA, Baredes S, Park RC. Incidence of Suicide in Patients With Head and Neck Cancer. JAMA Otolaryngol Head Neck Surg. 2015 Dec;141(12):1075-81.

[12] Osazuwa-Peters N, Arnold LD, Loux TM, Varvares MA, Schootman M. Factors associated with increased risk of suicide among survivors of head and neck cancer: A population-based analysis. Oral Oncol. 2018 Jun;81:29-34.

Quite Refreshing Indeed

In my March 21, 2018 blog post, I wrote about taking a break from cancer treatment. I had just finished my ninth cycle/month of combination chemotherapy (carboplatin and paclitaxel), which significantly reduced the size of tumors in my lungs and spleen since last summer.

Over the past few years, I received three separate cancer treatments with little reprieve from many of the associated toxicities. At the encouragement of my oncologist, Dr. David Pfister at MSKCC, and with my disease stable since January 19, 2018, it was an opportune time to try and heal – both physically and mentally.

I was nervous about what my cancer would do during the break. Actually, I’m still very apprehensive. But what I experienced during this period exceeded my wildest expectations. In fact, it was nice to feel “normal” for a change. Or at least normal for a Stage 4 cancer patient.

Beginning in April 2018, my energy slowly returned. Just in time for the arrival of beautiful spring weather. After a long winter, I was finally able to get outside and go for extended walks with Humphrey. Flowers bloomed and the landscape was green again. Hope and renewal filled the air.

Feeling more confident about my energy levels, I accepted an invitation to speak at the Global Cancer Clinical Research, Drug Development and Therapeutic Accessibility Workshop in Bethesda, MD on May 1, 2018. The session focused on access to clinical studies and cancer treatment from the patient’s perspective.

On May 3, 2018, I published the second edition of my book A Walk with Purpose. I wrote the first edition in three months, as I was gravely concerned at the time that my health would deteriorate, and the manuscript wouldn’t get finished. But now I was afforded much more time to carefully review, edit, and rewrite the story. I’m finally happy with the result.

Shortly thereafter, I spent a week-long vacation with my parents, grandmother, and aunt in Lake Louise, a hamlet in Banff National Park in the Canadian Rockies. The company, weather, food, and scenery were wonderful. For a whole week, I almost forgot about cancer – especially as my appetite returned. So did my eyebrows and eyelashes – thank goodness.

Having not satisfied my zeal to hike, upon my return home from Canada I took Humphrey for a 5.5-mile walk on the Appalachian Trail. The Delaware Water Gap National Recreation Area is home to 28 miles of the Appalachian Trail and is less than a 2-hour drive from where we live. The heat, humidity, and insects were a sharp contrast to hiking in Canada, but it was important for me to get back to another one of my favorite places.

Lorie and I attended a fabulous Memorial Day barbeque with friends. This only reinforced the sense of normalcy during the period, including imbibing a few adult beverages. Certainly not one of my healthier decisions, but for a brief moment, I wasn’t that terminal cancer guy. It was nice.

Just last week, I returned to my hometown of Chicago in connection with the year’s largest cancer confab – the American Society of Clinical Oncology (ASCO) annual meeting. I did a speaking event and second edition book signing for McKesson. In my 25-years working in the industry, I’ve never felt more welcomed as I did that night. It was truly humbling.

During the Chicago trip, I also had an opportunity to see many individuals for the first time in a while. This included Dr. James Gulley of the NIH, Brad Loncar, and many other longtime industry friends. Most importantly, I was able to reconnect with one of my younger cousins for the first time since Christmas 2012. It was exciting to hear about her husband’s brand new coffee business – Sandhill Coffee.

For the past two months, I’ve enjoyed being able to get outside, travel, and enjoy life without being hampered by the deleterious effects of chemotherapy. It’s been amazing and definitely the “pause that refreshes” – just as I had hoped.

But there is still so much to be done with regard to education and awareness of the human papillomavirus (HPV), its link to many cancers, and the available prophylactic vaccine. Accordingly, I hope that my “walk with purpose” as an expert patient is far from finished.

Towards the end of June 2018, I’ll have my first CT scan since being off treatment to assess whether my disease is progressing, regressing, or continuing to remain stable. The results of which will profoundly shape my future plans.

Until then, I’m going to continue to maximize this break from treatment and continue to enjoy every moment I can. I’m especially looking forward to school being out soon, so I can spend more quality time with my wife and daughters!

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Second Edition

In January 2017, I first started writing A Walk with Purpose. It was quite an undertaking. To make the endeavor more challenging, I was gravely concerned at the time that my health would deteriorate, and the manuscript wouldn’t get finished. With great urgency, I completed and published the first edition by the end of April 2017.

In October 2017, I released a slightly updated version. Since then, however, a lot has changed. Quite a lot, actually. Aside from my cancer journey, I’ve grown both as a writer and as an individual.

So, I recently dusted off my keyboard and began writing the second edition. My pup Humphrey was not amused that I spent many, many days locked in my home office writing again. But, I’m pleased to report that the “new” paperback and Amazon Kindle versions are available as of today (click here). Coincidentally, published almost precisely a year after the original release.

The second edition of A Walk with Purpose is mostly a rewrite. The ending reflects my situation as of the current day. Some text was removed to make room for newer information. Spelling and grammar checked (and rechecked). And much more.

I’m very proud of the second edition. It’s finally the story that I wanted to tell.

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Metaphors of Spring

Humphrey car surfing on the way to the park

One thing cancer has taught me is to seize even small moments to enjoy being alive. Today’s beautiful spring weather made it irresistible to take our Golden Retriever, Humphrey, for a walk at nearby Tyler State Park. I had plenty of other things to do, but surely they could wait. Cooler temperatures and rain were forecast for the coming days.

I witnessed so many metaphors for life, death, rebirth, and hope during the walk. And while I’ve been to the park numerous times, it was refreshing to view the landscape through a very different lens.

I came across a pair of mallards wait patiently for eggs to hatch. I looked at barren trees wondering if they were dead or alive in the absence of greenery. Bright yellow and purple colors appeared out of nowhere among a sea of dead grass and branches. I saw the pure happiness of our pup, who was excited just to be outside and experience the scents of the season.

While it’s been a long, cold winter, the arrival of spring signals relief. Flowers bloom, leaves grow, and nature comes alive again. Similarly, after much cold and suffering, my body and mind are starting to come back to life during a recent reprieve from toxic treatment.

And although the flowers start to bloom again, there are still chilly mornings and evenings that serve as a stark reminder that winter only recently passed. Summer is yet to come, but we’re not there yet. Today was just a glimpse.

Cancer survivors often worry about things to come. Nature, however, appears immune to this concern. The budding leaves and flowers don’t seem worried they won’t make it to blossom. The pair of ducks didn’t look panicked that they will find ample food and successfully raise their young. Nature didn’t appear to have a “plan B” if things didn’t work out this time. Nor do I.

Yes, today I appreciated spring’s arrival, and it brought me great happiness. More importantly, it made me anticipate the days ahead. The chance to explore new ideas and opportunities. An opportunity to start over and reinvent once again.

The Pause that Refreshes

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.

Michael Becker’s CT scans from June and December 2006, which show the initial progression of disease in both lungs.

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.

Whirlwind

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).

Panel session titled, “Right to Try – Is it a Solution?”

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!

Michael Becker receiving chemotherapy at MSKCC on 2/27/18

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.

Just A Walk

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.

Humphrey

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.

Humphrey

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!