Triangle of Pain

In the weeks and months following my initial cancer diagnosis in December 2015, the disease status occupied my every thought. Did the initial chemoradiation treatment work? Or had cancer already spread below my collar bone, which would change my prognosis from curative to palliative? If so, where did it spread and how fast was it growing? It was all I could think about (rightfully so, as it turned out).

Lately, however, my focus has shifted to managing various debilitating side effects of cancer and its treatment. It started with hip/buttock/leg pain that ultimately was diagnosed as originating from cancer progression to my spine. That pain was primarily managed with a combination of radiation, steroids, and OxyContin®, along with the use of a walking cane. Next came breathing difficulty and coughing from radiation pneumonitis and fibrosis. Those effects are being managed by increasing existing steroids and adding a nebulizer.

As mentioned in my prior blog post, the latest issue is a sharp, stabbing pain near the inferior border of my left lung (see Figure 1). This has been accompanied by mild swelling and numbness near the skin surface. Coincidentally, this is also where three permanent radiation tattoos used to guide my prior spleen therapy can be seen (tiny blue dots seen within small, solid red circles in Figure 1). The pain, swelling, and numbness are all located within the red dashed lines—what I reference as a “triangle of pain.”

Figure 1. Michael Becker’s permanent radiation tattoos—tiny blue dots shown in small, solid red circles. Pain, swelling, and numbness have been confined to the triangular area represented by the red dashed lines.

Recent CT and X-ray imaging of the area hasn’t revealed any anomalies, such as a rib fracture. I was already taking 10mg of OxyContin and 20mg of prednisone daily to help manage the spinal metastases and radiation pneumonitis/fibrosis, the latter of which was increased to 30mg to potentially help with the new rib pain. On chemotherapy treatment day, I also receive an additional dose of steroids via IV as part of the premedication course. Additionally, I have recently been prescribed 300mg gabapentin twice daily, as it can help treat neuropathic pain.

When I got out of bed the day after my first dose of paclitaxel last week, I noticed that the rib area pain was completely gone for the first time. The relief must have been due to the added dose of steroids, as the rib pain returned in full force the following day. I had a similar experience this week following my second treatment with paclitaxel yesterday at Memorial Sloan-Kettering Cancer Center (MSKCC).

While steroids can be very effective, the list of side effects they can cause is extensive. Of particular concern are osteoporosis (bone weakness) and osteonecrosis (bone death). Accordingly, my medical team has put me back down to 20mg of prednisone daily with the goal of finding alternatives for pain management, such as gabapentin.

Another option is to locate the source of pain and treat it instead. For example, it’s possible that the rib area pain that I’m experiencing is referred pain from further cancer progression to my spine. Similar to how the hip/buttock/leg pain I’m experiencing is referred from cancer invasion of the L5 vertebrae. To gain more insight, I will be scheduled for another MRI of the spine in the near future.

With spring around the corner, it would be nice to get these issues addressed so that I can feel comfortable doing normal activities again, such as simply taking the dogs for a walk. Currently, this is difficult to manage with a walking cane and breathing difficulties that are exacerbated by cold weather.

Closing the post on a positive note, like Lester Holt’s signature sign-off segments that help end his NBC evening broadcasts with a reason for optimism, we were fortunate to celebrate Rosie’s 21st birthday as a family this week. It was a beautiful day that started with a trip down memory lane—cooking her pancakes for breakfast. An important reminder that there are still beautiful moments scattered all along the cancer journey and reasons to continue the walk. In fact, up next…Lorie’s birthday and Megan’s high school graduation!

Michael Becker cutting the birthday cake with daughter Rosie and friend Abbi

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.

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…