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…

18 thoughts on “Up to Eleven”

  1. As a fellow Head and Neck warrior, I do have a comment about your “Butt” pain. I had a very similar experience, and it did cause real problems. It was discovered that my Gluts had stopped working, no explaination, and that my Piriformis muscles were doing all the work. With some very subtle physical therapy, I got my Gluts working again. There is s
    till some minor pain. Ed King ehkamr@me.com (Fort Collins, CO)

  2. Wow, sorry to hear this update.

    I’ve seen what mets to the spine can do (my mother’s spine has been effectively destroyed by mBC mets to the spine).

    And I wish you better luck with the bone radiation than my late wife had – although she tolerated radiation very well, the bone mets (melanoma) just basically took the radiation and responded with a “LOL wut?” before going on their not-so-merry way.

    • Yes, sadly radiation is effective most of the time – but about 30% of patients don’t respond. A bit nervous since my spleen met actually increased after radiation (although it “could” just be inflammation from the treatment). Time will tell. So sorry to hear about your late wife.

      • And the pain side of this equation is so strange.

        My wife had extensive bone mets, so much so that the pelvis was cracked and the femoral head of one leg was half-eaten away … and yet, she never complained about any meaningful pain. Just grabbed her cane and hobbled around like a happy penguin.

        But earlier on, her liver mets at one point caused excruciating pain (long story short, she had surgery, had recurrence/widespread mets, got those somewhat under control, then they reasserted themselves…).

        Very strange to see just how true it is in this case that “every patient is different”.

  3. I am just so sorry that you’re experiencing these issues and not seeing results that you had hoped for (except, of course, the lung lesions and that IS good news!)! You seem to have a sensible plan, one that will likely give you the quality of life that is most important. I’m glad to hear that you might give cetuximab a shot too…it can’t hurt and it might actually help!

    Your clear-headedness is a real tool for you now, as is your wise and self-caring attitude. I am sending you a ton of positive and healthy vibes and will be eager to hear more about how you’re getting along. Thank you for so generously sharing your journey!

    My heartfelt best wishes!

    Marin

  4. Michael,
    I am currently on Keytruda, 4th injection for HNSCC. I see you tried immunotherapy in the firsts half of 2017. Could you comment on your experience? I guess it didn’t work?

    Lately there has been evidence in a melanoma trial that patients who responded to checkpoint immunotherapy had a significantly different microbiome than the non responders: Association Between Gut Microbiome and Responses in Melanoma Patients on Anti-PD-1 Therapy: https://www.youtube.com/watch?v=Mpc-NySpkP8

    I think it is known platinum chemotherapies devastate the microbiome which many consider is the immune system. Yet there is no intervention to restore the microbiome prior to starting immunotherapy.

    Here is some info on Merkel cell carcinoma(MCC) where theycan treat first line patients with immunotherapy and they have found that the percentage of patients responding to the checkpoint drugs goes up in patients not previously treated with platinum based chemotherapies:
    https://www.skincancer.org/skin-cancer-information/merkel/dr-nghiem-qa

    It states – “Until recently, chemotherapy was the frontline therapy. But if you
    treat advanced MCC with a checkpoint inhibitor before doing chemotherapy, about 60 percent of patients respond.
    If you wait until the patient has failed one round of chemotherapy, it appears that about 40 percent of patients respond.
    And after two or more rounds of chemotherapy, about 20 percent of patients respond.

    John

  5. Hello Michael,
    We are wishing you the best with the radiation therapy and cetuximab, should you choose that therapy. I’m glad you are working with a great team at MSKCC. Our prayers remain with you and your family.
    –Rich

  6. Michael, as always, thank you for the sharing and the education you are providing all of us. I did cetuximab in my oropharyngeal cancer treatment after my body didn’t handle the cisplatin well, and the side effects were pretty minimal — though the itching/flaking of my skin was annoying. Thank you also for the Spinal Tap reference. You are always in my thoughts and prayers. — John.

  7. Hi Michael,

    I have been following your story since you first posted. I’ve very sorry to hear about your latest update 🙁 I am totally for vaccinations for my children and did inquire about the HPV vaccine based on following your story. (I wouldn’t have known about it otherwise).. My children will definitely be getting that vaccine when it’s time for them to get it! Thank you for sharing your story and being an advocate of how important this vaccine or any of them would be.

  8. Hi Michael,
    Someone said you’re the bravest person, and you are. Youre also the kindest. This blog is as much for us and other future cancer patients as it is for you. And your HPV campaigning is all for the benefit of unknown countless people. People you don’t know – Won’t get cancer in 20-30 years – because u educated their parents to get them vaccinated. They won’t even have any idea who you are, or that they might have had cancer.
    I’ve told countless people since you told me that it is really a “cancer vaccine.”
    Our friend Jami just texted last night that her 2 boys were scheduled for their HPV vaccine (based on my preaching.)
    Anyway, hang in there buddy.
    I’m looking forward to a backyard beer as soon as I get rid of this feeding tube and I can swallow again lol.
    Evan

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