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.

Still More to Do

If you’re like me, the holiday season often brings with it a certain bittersweet nostalgia. I reflect on the good times, such as Thanksgiving dinner gatherings with kindhearted neighbors who embraced our family after we moved from Illinois. I remember subsequently packing up the car with holiday gifts and traveling back home to celebrate with relatives. Other times I think about loved ones long gone or how life changed following my formal cancer diagnosis back in December 2015. It’s a period filled with both joy and stress.

This holiday season started off rough due to pain associated with cancer progression to my spine along with developing radiation pneumonitis (inflammation of the lung) following palliative radiation therapy directed to tumors in my lungs over the summer. Fortunately, my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, at Memorial Sloan-Kettering Cancer Center (MSKCC) were able to give me a “tune-up” in advance of Thanksgiving and two upcoming speaking engagements.

A new course of steroids (prednisone) helped address the coughing and breathing difficulty from the pneumonitis. Separate palliative radiation treatment to my spine tumors helped reduce, but not eliminate, pain from those sites. Bone is a frequent site of cancer spread and typically indicates a short-term prognosis in cancer patients. Following radiation therapy to my spine, I developed a compression fracture likely due to the destruction of healthy bone from cancer. So far, the remaining pain is mostly managed with oxycodone and prednisone. I still use a walking cane for those infrequent times when the pain breaks through.

Thanks to the successful cancer tune-up at MSKCC, I was able to honor the kind invitation by Matthew Herper, Senior Editor, Pharma & Healthcare at Forbes, to speak at the Forbes Healthcare Summit, held November 28-29, 2019 in New York. Participating in the event was a fantastic experience, although I underestimated the emotional impact and fought back the tears during most of my speech titled “It’s Time to Talk About Dying.” A video replay of the seven-minute talk is available below:

My last dose of systemic (versus local) cancer treatment was in March 2018 after completing nine months of a chemotherapy doublet (carboplatin and paclitaxel). Systemic treatment means affecting the entire body, as opposed to local treatment that targets a single organ or body part. I was exhausted, as I had little if any break in treatment since January 2016. It was suggested that I take a treatment break for a month or two to give both my body and mind some time to recuperate. I agreed.

As my strength, energy, taste, and hair returned, however, I began to appreciate “quality” of life over the “quantity” of life potentially afforded by toxic treatments. It was the best I felt in three years, which made me decide to extend my systemic treatment hiatus indefinitely. As appropriate, I could still opt to receive local palliative treatment, such as external radiation. Those side-effects were minimal by comparison.

In the absence of chemotherapy or other systemic treatment, my disease progressed during the nine-month break. Existing sites of cancer returned to their pre-treatment sizes, such as the tumor on my spleen and certain lung tumors. New locations also appeared, including my spine. None of this unexpected given the lack of systemic therapy.

Initially, I envisioned having a good quality of life for a few months during the treatment break before cancer came roaring back and then succumbing to the disease in approximately six months. In other words, I REALLY didn’t expect to still be here today. Sure, adverse events could still occur at any time without notice, but nothing is suggesting my imminent demise.

Chasing a few sites of cancer using external radiation worked well initially, but as the disease progressed, I found myself spending more time traveling to/from New York for simulation appointments, treatment, and follow-up. I wondered, was it time to revisit systemic therapy?

Since the beginning, Dr. Pfister and Nicole have been terrific about customizing treatments based on the concerns I expressed. This included forgoing treatment that included 5-fluorouracil (5-FU) and/or cetuximab (Erbitux®) based on my reservations. (Disclaimer: Both 5-FU and cetuximab are approved agents with established efficacy and roles in cancer treatment. In addition, I am not a doctor and do not have formal medical training—my treatment decisions are not recommendations or medical advice).

During a recent office visit, we discussed various systemic treatment options. Among the available alternatives, restarting the chemotherapy doublet was proposed. The treatment was quite effective for nine-months, but the toxicities negatively impacted my quality of life. I spent most of that time napping on the couch, many foods tasted bad, and towards the end, my blood counts were slow to return to normal.

Of the two drugs, it was carboplatin that I really disliked. It was the harsher of the two chemotherapeutics. Accordingly, Dr. Pfister proposed starting with paclitaxel alone for a cycle of treatment (approximately one month). It’s “possible” that the paclitaxel was responsible for most of the favorable treatment effects and the carboplatin was only adding toxicity to the equation. Since I’ve always received the two in combination, there’s no way to tell. At the end of the paclitaxel cycle, we can see whether it has any benefit as a monotherapy. If not, we can decide whether or not to reintroduce carboplatin in a subsequent cycle.

Michael and Lorie Becker in the chemotherapy suite at MSKCC

Lorie accompanied me for my first infusion of paclitaxel yesterday afternoon. In contrast to recent trips, there were no problems with our commute to MSKCC via train from Pennsylvania. Even better, my infusion was uneventful and started earlier than expected. This left us both in good spirits!

Writing this blog for the past three years has taught me that some readers will view a post as the glass being half full, while others see it as half empty. So, just for the sake of clarity, my prognosis is unchanged. I’m a terminal cancer patient who will eventually succumb to the disease. Exactly how and when no one on earth knows. There are currently no curative treatment options. Palliative treatment might prolong my life to some degree and minimize discomfort.

Despite my extended treatment break and disease progression, I remain healthy enough to continue advocating for myself and others. I plan on doing so for as long as I am able, as there is still more to do concerning issues that are important to me (human papillomavirus/HPV and its link to six cancers, HPV vaccination, talking openly about death/dying, patient rights, and more). In this regard, I look forward to my role as keynote speaker at BioNJ’s upcoming Third Annual Patient Advocacy Summit being held on December 13, 2018, at Celgene Corporation (click here for details).

Not So Nifty Fifty

I cannot recall a time when I was this upset with myself. I’m not a doctor, but I feel my background should have allowed me to piece together the clues and help come up with a differential diagnosis much earlier. The perfect opportunity to participate in my healthcare by joining in the discussion and raising the right questions.

Lorie and I made a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care center last Tuesday (11/6/18). This was due to a fever and breathing difficulty both after going up/down stairs and following coughing episodes. Consider what was known at the time:

  1. X-ray at urgent care suggesting pneumonia
  2. Shortness of breath
  3. Non-productive cough
  4. Low-grade fever
  5. History of radiation therapy to lungs in late July/early August

Pneumonia is a bacterial infection that inflames the air sacs in one or both lungs, but a subsequent CT scan and blood work didn’t confirm. Nonetheless, to be safe and in the absence of any other condition, I was prescribed one week’s worth of the broad spectrum antibiotic levofloxacin (Levaquin®) and instructed to follow-up with my oncologist.

Figure 1: Still untouched birthday ice cream cake

During the following week, all of the symptoms persisted. Between the breathing issues and fever, I didn’t feel like doing much other than resting on the couch all day and writing. Thankfully, I did manage to rally for an early birthday barbeque celebration this past Sunday. Then again, perhaps I jinxed myself by celebrating and posting early! Right, @23aloha? 😉

Aside from the aforementioned, recall that I’ve been suffering from back pain due to the progression of cancer to the spine. In early October, I met with a neurosurgeon at MSKCC in advance of receiving targeted radiation to two areas of my spine. To help prevent or minimize the pain flare that is common following radiation treatment to the skeleton, the neurosurgeon prescribed a steroid (dexamethasone).

Among other side effects, patients who are on steroids for three-weeks or longer are more susceptible to infections than are healthy individuals per the product prescribing information. After finishing radiation treatment to my spine on October 18th, I inquired with my health care team at MSKCC and began gradually reducing my dexamethasone dose to zero beginning on November 1st and finishing on November 6th (hint: day of my trip to urgent care, didn’t seem relevant at the time).

As referenced in my prior post, I’m not a big “birthday” person, but I was looking forward to celebrating my 50th milestone this past Monday. I hoped that the antibiotic would work and I’d be feeling somewhat better by then. No such luck. In general, I felt worse that day, and by the evening my temperature jumped to 101.9 Fahrenheit. No restaurant celebration or interest in my favorite ice cream cake (Figure 1). I took two acetaminophen, which brought the temperature down, and made an appointment the next afternoon to see my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN.

Of course, it wouldn’t be a commute between home and NYC without experiencing some significant delay. This time, a tugboat struck the Portal Bridge and we were held for close to an hour as the bridge was inspected for safety. We arrived at our appointment an hour late, but MSKCC was very accommodating.

After reviewing a new chest x-ray, my medical team offered a differential diagnosis of radiation pneumonitis based on empirical evidence. As soon as I heard the words, it made perfect sense. How could I have missed that! I knew radiation pneumonitis was a potential risk.

Radiation pneumonitis and pneumonia share many clinical features, including inflammation of the lung(s). Radiation pneumonitis is one of the most common toxicities of stereotactic body radiation therapy (SBRT). Most cases are either asymptomatic or manageable, with the reported rates of symptomatic radiation pneumonitis after SBRT range from 9% to 28%. However, most patients develop late pulmonary toxicity characterized by localized pulmonary fibrosis (scarring) in the region receiving the high-dose.

Sure enough, the suspicious areas on my chest x-ray correlated almost exactly with the areas targeted with SBRT over the summer. The sudden appearance of symptoms corresponding with tapering of the prior steroid dexamethasone also provided an important clue. It is likely the steroid meant to address potential bone pain flare issues was also treating the radiation pneumonitis. When I stopped the dexamethasone, the radiation pneumonitis was left untreated and suddenly became symptomatic. Ta-da!

The good news is that with adequate steroid treatment, most patients achieve complete recovery from their symptoms. As a result, I was prescribed an initial two-week supply of another steroid (prednisone). But a diagnosis of pneumonitis does increase the risk of developing subsequent pulmonary complications, including fibrosis, a permanent scarring of the lungs.

While it wasn’t a perfect birthday in the traditional sense (whatever that even means), I prefer to focus on the fact that Lorie, Rosie, and Megan (and the zoo!) were with me on this 50th milestone, and that the recent symptoms weren’t due to further cancer progression (my initial concern) but rather a manageable radiation treatment side effect. Honestly, that is the best gift I could have received.

I would be remiss if I didn’t also acknowledge how important all of the happy birthday calls, texts, gifts, and social media posts were to me. It is one thing to hear from family and friends, but some messages from people I’ve never met in person were also truly lovely and brought a smile to my face. I do read EVERY post! So, to everyone who took time out of their day to acknowledge my birthday—thank you from the bottom of my heart!

 

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.