Mixed Bag

After completing two cycles of chemotherapy with Taxol® (paclitaxel) monotherapy, I had my periodic CT scan last week to determine the outcome. Recall that one full cycle of this therapy is defined as once-weekly infusions of paclitaxel for three consecutive weeks followed by a one week break typically reserved for imaging and/or rest and recovery.

The CT scan results were a mixed bag. On the positive side, the image showed minor decreases in the size of my lung metastases, mediastinal lymph nodes (the mediastinum contains the heart, thymus gland, portions of the esophagus and trachea, and other structures), and the tumor on my spleen since my prior CT scan on November 6, 2018. One lesion in my right kidney increased in size, while others remained stable or decreased.

With regard to cancer that has spread to my spine/bone, it is difficult to distinguish between cancer progression (bad) or treatment effect/healing from prior radiation treatment (good) on a CT image. Cancer that spreads to the bone is often characterized as osteolytic (causing the breakdown of bone), osteoblastic (causing increased bone production), or in some cases a mix of both. My latest scan showed increased bone formation activity with several new sites visualized, which could either reflect a healing response from radiation therapy or cancer progression. On a positive note, the compression fracture at my L5 vertebrae looks unchanged/stable from the prior scan.

Based on the latest CT scan, my medical oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, with Memorial Sloan-Kettering Cancer Center (MSKCC) feel that there is a very real component of my disease that remains sensitive to paclitaxel. As such, they are not inclined to add carboplatin back into the mix not knowing if it will contribute anything other than more side effects. And they certainly don’t want to abandon paclitaxel now, since I am still objectively responding. For example, having me switch to a clinical trial with a lot of unknowns and potential negative impact on quality of life.

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Figure 1: Michael Becker receiving chemotherapy at MSKCC on 1/29/19.

So, I’m currently scheduled for two more cycles of paclitaxel monotherapy (3 weeks on, 1 week off x 2) and then reimage. My first dose was infused during yesterday’s appointment without issue (Figure 1).

As mentioned in my prior post, bone pain and radiation pneumonitis that emerged in late 2018 remain my biggest challenge. The bone pain is manageable with a combination of steroids and oxycodone, each with their own side effects. It’s no wonder that skeletal metastases remain one of the more debilitating problems for cancer patients. After experimenting with different treatments, my radiation pneumonitis is currently manageable through a combination of steroids and levalbuterol inhalation solution via a nebulizer.

The latest new issue to surface is a sharp, stabbing pain near the inferior border of my left lung (Figure 2). This has been accompanied by mild swelling and numbness near the skin surface, which is coincidentally where radiation tattoos used to guide my prior spleen therapy can be seen. The pain started just over a week ago and has been getting progressively worse.

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Figure 2: Michael Becker’s radiation tattoos shown in small, solid red circles. Dashed circle with “A” represents the area of pain, while “B” represents the numb and swollen area.

Diagnosing the source of this strange new pain occupied the majority of my time at MSKCC during yesterday’s appointment. Normally I would have jumped to the conclusion that cancer had simply spread to that rib area, but my prior CT scan from a mere week ago didn’t show any anomalies. Nonetheless, an X-ray of my chest was taken to rule out a possible rib fracture that could have been caused by any one of my severe coughing attacks associated with the radiation pneumonitis. However, the X-ray came back clean with no sign of fracture.

In the absence of a fracture or cancer progression, other conditions could explain this new pain. One example is costochondritis, an inflammation of the junctions where the upper ribs join with the cartilage that holds them to the breastbone. Or the pain, numbness, and swelling could be late effects from prior radiation to the spleen.

To further support that the new pain is related to an inflammatory condition, we monitored the response to increased steroids (anti-inflammatory agents). I’m already taking 20mg of prednisone daily to help with the spinal metastases and radiation pneumonitis, but I always receive an additional dose of steroids via IV as part of the premedication course for chemotherapy. Additionally, I was prescribed 300mg gabapentin twice daily, as it can help treat neuropathic pain. I took my first pill last night.

When I got out of bed today, I noticed that the rib pain was gone. The big question remains—what caused the pain in the first place? And did the double steroid dose eliminate the pain, or did the gabapentin play a role? As the additional steroids wear off over the coming days, it will be interesting to see how this plays out.

Lastly, I addressed the increased depression referenced in my prior post. Following an appointment with my psychiatrist at MSKCC, Dr. Jeffrey B. Freedman, my daily dose of Zoloft® (sertraline HCl) was increased and already seems to be helping. PSA—more cancer patients, especially men, should seek professional help for treating depression.

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.

Three Month Mark

Hard to believe, but later this week will be the three-month anniversary since I finished chemoradiation. Unfortunately, it’s also been nearly that long since my last blog post, although I did write a brief article for Cure Magazine published in April 2016 that can be viewed here.

I haven’t been writing much lately because I wanted this blog to be somewhat uplifting and inspirational. Frankly, the past few months have been extremely frustrating and difficult. It occurred to me, however, that sharing the bad along with the good may be equally important to others facing head and neck cancer. So here it goes…

In my last post from March 2016 I noted that my weight declined by 20 pounds since the start of chemoradiation. I’m now down a total of about 30 pounds (which I still think is okay since I was overweight to start). The additional weight loss comes from a combination of taste disturbances, reduced salivary output, and general loss of appetite during the period.

I’m pleased to report that my taste buds are now ~90% back to normal and that “most” foods taste the same as before therapy. Unfortunately, my saliva output is still greatly diminished and eating dry foods, such as bread, is very challenging. I have managed to eat a hamburger by taking off the top bun and eating the rest with a fork and knife along with a fair amount of ketchup. The biggest issue relates to a general lack of interest in eating, which I originally thought was due to the taste disturbances. Most days I have a high protein, nutritional shake for both breakfast and lunch and then a “normal” dinner and dessert. I haven’t been out to a restaurant since the start of therapy, as I am self-conscious about my eating habits.

Fatigue is still an issue, although it has improved over the past month or so. I returned to work full-time around mid-March, which meant getting up early and commuting to New York. Until recently, I would come home and literally pass out on the couch from exhaustion at the end of the day. Now I am able to stay awake through dinner, watch some television, and go to bed at a reasonable hour. I do still sleep on the morning train ride to New York and look forward to the weekends where I normally sleep until noon or later to catchup on rest.

The one major issue I haven’t discussed at length in this blog is the psychological impact of being a cancer survivor – namely depression. Societal expectations have taught men not to display any emotions. We are trained from an early age to be confident, stoic and strong. It is extremely difficult to fulfill this role or expectation as a male cancer survivor. On more than one occasion I have burst into an emotional crying session lasting a good 15-minutes. I’m not talking about the quiet episode of crying with sniffles and a tear or two down the side of your cheek. I mean full-fledged bawling your eyes out accompanied by nasal discharge and the near inability to speak normally – “I…I…I…nuh…na…nah…need…ah…uh…t…t…tis…tissue.”

The first such breakdown occurred around the start of chemoradiation when my wife and oldest daughter first came to my temporary apartment in New York. In retrospect, I had bottled up all of the emotion from first discovering the growth on my neck, to receiving a formal cancer diagnosis, to my first infusion of chemotherapy, etc. and let it all out at once. More recently, however, I broke down after showering the morning of my oldest daughter’s prom. I started to think about how happy I was to get home from New York during therapy to see my youngest daughter for her freshman formal and recalled the photographs from that evening with my neck visibly red from the radiation therapy. Then I started to think – are these going to be the last “big” events I will be around to see for each of my daughters? That spiraled into a series of awful “what if” questions that left me in a giant puddle.

Most of the time I am able to maintain a positive outlook and not let cancer “win” by occupying my every thought (insert ZOLOFT® ad here…). This is made harder by the requirement for periodic tests and imaging studies to determine whether or not the cancer has returned. Aside from those periodic tests, it feels like I am constantly watching over my shoulder for signs or symptoms of cancer’s return.

For example, in early May my wife noticed my voice had changed. At first she dismissed it as that froggy, lower tone you sometimes get first thing in the morning or when you have a head cold. But it didn’t go away and eventually even I noticed it. Subsequently, I found that the neck area under my chin was swollen. My first thought was “#@$&!” – the original cancer had now spread to the vocal cords, larynx (voice box), or other areas of the throat, as these would all be relevant symptoms. I saw my head and neck surgeon last week and he didn’t see anything suspicious upon visual examination. His initial diagnosis was that the voice change and neck swelling were simply the after-effects of radiation therapy, which can manifest even months after treatment. Nonetheless, he wanted to confer with both my medical oncologist and radiation oncologist to determine whether or not an imaging study is warranted. In the meantime, I’m trying to adjust to my new bass-baritone “Barry White” voice…which may or may not return to normal.

So that’s about it…you are now caught up on my life over the past few months. The next major event will be my PET scan on July 19, which will be the first such imaging test following treatment. Still hoping for a positive outcome from that study and will update as appropriate.