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…