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.