This is Lorie with the final blog post. Michael passed away at home on Tuesday, July 9th. Our lives will be forever changed. He left his mark on the world and educated many along the way. My heart is truly shattered. I’m told time eases the pain. Thank you for all of your love and support and hopefully this will help sustain us. May his memory be a blessing.
Biotechnology Innovation Organization
Published on Jun 4, 2019
Debuting for the first time this year, patient advocates, industry leaders, and BIO experts discuss emerging trends live from the convention floor in Philadelphia. Catch Good Day BIO’s inaugural episode here! Please click the play icon below to start at Michael Becker’s segment.
To say it has been a bit damp and stormy lately here would be an understatement. This past week is the first time that I can recall being forced into the basement to seek shelter from a tornado warning.
Things aren’t much better back in my home town of Chicago, which broke the record for
When the local forecast called for warm and dry conditions over the weekend, I couldn’t help but beg Lorie to go for a walk at Tyler State Park. While my breathing conditions deteriorated, a wheelchair had been dropped off on Saturday. Also, I received a prescription for morphine sulfate oral solution to help open up my airwaves. What could go wrong?
I haven’t been able to take our pup Humphrey for a walk in quite some time, so bringing him along was a must. However, I didn’t think through how little I would be able to help. Holding his leash in my hand(s) would be a sure-fire disaster — dragging me behind him at warp speed. Having Lorie hold one end of the rope while steering the wheelchair with the other hand was equally dangerous. Well, we’d figure something out.
I couldn’t see behind me, so I’m not sure what Lorie had worked out. Judging by her two scraped knees, it went about as planned. I felt awful. The struggle between my desire for freedom versus the safety of both Humphrey and Lorie was quite real. Humphrey only wanted to play with other pups he met in the park and who could blame him? But Lorie was running out of breath pushing the wheelchair through the rough gravel path, and it was clear my ill-planned trip needed to come to an end.
Next time we needed to enlist the help of a third person to handle Humphrey or leave him at home. We broke out the water bowl for Humphrey before heading home. Afterward, he quickly fell asleep in the back of the car.
While the trip was otherwise fun, it was a sad reminder that my days of doing speaking engagements and other patient advocacy activities have come to an end: “The spirit indeed is willing, but the flesh is weak.” (Matthew 26:41). Even with the assistance of Lorie, an oxygen tank, and morphine, I couldn’t manage to make the short trip.
This week was also the first anniversary when I returned to Chicago in connection with the year’s largest cancer confab — the American Society of Clinical Oncology (ASCO) annual meeting. At the time, I did a speaking event and second edition book signing for McKesson. I cannot imagine doing that event again now.
Terminal cancer patient releases his first public service announcement (PSA) aimed at encouraging faster diagnosis of head and neck cancer.
It was November 25th, 2015, the day before Thanksgiving and I was working from home. After responding to some emails that morning, I got ready and tiptoed gingerly up and down the cold white tiles of our bathroom floor, waiting for the shower water to heat up.
In the mirror’s reflection, I suddenly noticed something different about the right side of my neck. Placing my hand there, I could feel a solid lump just under my jawline that was about 3 centimeters in diameter (see Figure 1). The left side of my neck appeared normal.
The bulge wasn’t there the day before, or I would have felt it while shaving. It was a solid mass and wasn’t sore at all to the touch. It didn’t feel warm and seemed tethered to its location.
Putting my shower on hold, I threw my sweatpants and t-shirt back on and hurried back to my computer to do a quick search on the medical literature website PubMed from the U.S. National Library of Medicine. I quickly came across one medical journal article that contained a startling statistic: More than 75% of lateral (side) neck masses in patients older than 40 years are caused by malignant tumors.
The same article continued with guidance that “in the absence of overt signs of infection, a lateral neck mass is metastatic squamous cell carcinoma or lymphoma until proved otherwise.” The results made me nervous enough to reach for the phone and call our family physician for an appointment that day.
The most common cause for enlargement of the lymph nodes is infection or inflammation. However, such lymph nodes are often swollen, tender, and mobile. They can also exhibit abnormal redness of the surrounding skin and feel warm to the touch. Other than being swollen, my enlarged lymph node didn’t have any of these other symptoms.
My physician prescribed an antibiotic and instructed me to follow up with an Ear, Nose, and Throat (ENT) specialist if the lymph node didn’t decrease in size or got worse after the weekend. Unfortunately, there was no change in the size of my lymph node and subsequent testing confirmed the diagnosis of advanced oropharyngeal squamous cell carcinoma (OPSCC).
I’m thankful that my physician gave me a short course of antibiotic treatment. An article from the American Family Physician suggests a 2-week trial of antibiotics and then referring the patient for a biopsy if no resolution. However, every delay of 1 week in the referral of an OPSCC patient to secondary care correlates with a more advanced cancer stage at presentation and is associated with poorer survival. Specifically, researchers estimate that for every 1 week of delay in referral, the stage of
Call to action: Men and women over the age of 40 who discover a suspicious lump or mass on either side of their neck shouldn’t delay in seeking medical attention. Many patients should also avoid being treated by courses of antibiotics for weeks or months, as this causes a delay in referral to secondary care, generally to an ENT specialist. Don’t delay — get a suspicious neck lump checked out today!
Disclaimer: Michael Becker is not a doctor and does not have formal medical training. His commentary should not be construed as recommendations, endorsements, or medical advice.
In retrospect, the month of April was a blur. Between selling our former home, purchasing a new home, and my transition to home hospice care, there was a lot to do and consider. Through the fantastic generosity of family and friends, along with a lot of effort from Lorie, amazingly everything went smoothly.
It was tough for me to be a spectator for most of the events mentioned above since I’m restricted from physical activity due to cancer invasion of my spine. As just one example, I’m not supposed to lift more than 5-pounds or risk further fracture.
Making matters worse, I still don’t look like a terminal cancer patient. Other than seeing the hospital beds in our house, I’m sure that some of the people helping us pack questioned why I wasn’t lifting a hand with the move. Whether this was true or not, it affected me emotionally by adding to my depression. I wanted so badly to help.
As mentioned in a recent tweet, what’s been my biggest surprise since being diagnosed with terminal cancer? The people you thought you could count on but were wrong and the people you least expected to be there but rose to the occasion. So, for everyone who contributed financially, physically, or otherwise during the process — thank you from all of us!
I am also frequently asked whether or not I will be receiving further cancer treatment. In this regard, hospice stresses patient “care” over “cure”. The goal is to provide comfort during the final aspect of life. Therefore, no — I will not be receiving further treatment, such as chemotherapy, radiation, or participating in clinical trials. My ideal scenario, as described by Dr. Robert M. Wachter in a recent opinion piece for The New York Times is “death with dignity and grace, relatively free from pain and discomfort”.
Fortunately, our dog Humphrey did his best to reassure Lorie that he’d take good care of me as she returned to work after spring break. More comforting to her, however, are the weekly visits from hospice to monitor my vitals, change the bandage around my patient-controlled analgesia (PCA) device, and adjust my various medications as appropriate. I feel like we’ve made good progress in each of these areas over the past month and life is slowly returning to a “new normal.”
One remaining issue
In other news, I decided to close my Facebook account this week (for a variety of reasons). Going forward, this blog and my Twitter account will serve as the best ways to keep track of my cancer journey. Sign up for new post alerts here using your email address to be notified each time there is a new blog entry.
After completing the third and final palliative radiation therapy (RT) session this week, I was finally able to return home from Memorial Sloan-Kettering Cancer Center (MSKCC) after being admitted on March 8, 2019. The severe pain that plagued me during this period is due to the progression of cancer in my spine, which is managed through a combination of steroids and oral/IV narcotics. Hopefully, the RT will also provide pain relief in the coming days/weeks and reduce my dependence on the other medications.
In view of the relatively rapid cancer progression and difficulty in getting my pain under control, I made the decision that it was time for hospice. While many people believe that hospice care is only appropriate in the last days or weeks of life, it can be beneficial as much as 6 months before death is anticipated.
Hospice arrangements were coordinated with MSKCC, so I was sent home connected to a patient-controlled analgesia (PCA) pump allowing me to administer my own IV pain relief. With the press of a button, I can activate the fentanyl pump when/if the pain manages to break through the relief being provided by methadone, acetaminophen, gabapentin, and other oral analgesic drugs.
A hospital-style bed was waiting for me in our family room when I arrived home. Later that afternoon, members of the hospice team arrived to answer questions and ensure that I had all of my medications. It was a very smooth transition.
Lying in bed this morning, I could hear birds chirping outside as the first light of day crept over the horizon. Why was I awake so early? Perhaps it’s from the stimulative effects of the steroid medication. Maybe it’s just too hard to go back to sleep after finding myself once again tangled up in IV tubes connecting me to the fentanyl PCA.
My mind drifts to the principle of Occam’s razor: that the easiest explanation tends to be the right one. My mind is reeling over the fact that today marks another beautiful milestone. One that I didn’t think I would live to see, but am so blessed to witness. Today, Lorie and I celebrate our 27th wedding anniversary (Figure 1).
Many people are thankful
Consider the plight of people living with Alzheimer’s disease (AD) and the impact of this awful condition on their caregivers. As time passes and the disease progresses, memory problems worsen. The AD patient may fail to recognize close relatives, which can lead to irritability, outbursts of unpremeditated aggression, or resistance to caregiving.
Similarly, cancer can induce cognitive impairment. This can be attributed to the direct effects of cancer itself and/or due to the adverse effects of the treatment(s) given for the disease. Most studies have identified attention, memory, and information processing as the most common cognitive domains impacted by cancer and cancer-related treatments.
I have been irritable as of late, which is likely a side-effect of stress, steroids, and other medications more so than disease progression. But most of my cognitive impairment is mild and relegated to simply forgetting something I said or did. Fortunately, it would take much, much more to impact my ability to recall that for the past 27 years I’ve been the luckiest man alive. Happy Anniversary, Lorie!
Daniel Callahan, a pioneer in bioethics and noted author wrote, “Is death a friend or an enemy, to be acquiesced to or to be fought?” Nearly 25 years later, the answer to his important question remains elusive for both patients and health care providers.
Prior to my Stage IV cancer diagnosis in December 2015, I viewed death as a worthy adversary. One to be respected, even feared.
Cancer’s rapid advancement over the past few weeks provided an opportunity for me to rethink my image of death. As I knew and expected, bone is one of the most preferential targets for cancer to spread. Unfortunately, I’ve also experienced that bone pain is very difficult to treat and tends to be resistant to opioids. For these reasons, among others, my quality of life has greatly diminished since cancer first spread to my bone around October 2018.
In reading a retrospective review about bone metastases from squamous cell carcinoma of the head and neck (SCCHN), I was quite surprised by the accuracy of some key statistics. For example, the time from primary tumor diagnosis to the identification of metastatic bone disease ranged from being present at the time of initial diagnosis to a maximum 3.5 years later. Time from identification of metastatic bone disease to patient death was no greater than 8 months.
My initial diagnosis of Stage IV SCCHN was relayed to me in December 2015. Three years later, cancer spread to my spine. If the time from identification of metastatic bone disease to patient death is no higher than eight months, then my expiration date should be somewhere around May/June 2019.
Friedrich Wilhelm Nietzsche, a German philosopher, was quoted saying, “To die proudly when it is no longer possible to live proudly. Death of one’s own free choice, death at the proper time, with a clear head and with joyfulness, consummated in the midst of children and witnesses: so that an actual leave-taking is possible while he who is leaving is still there.”
Today (Friday) represents the two-week mark for my current hospital stay at Memorial Sloan-Kettering Cancer Center (MSKCC). Fortunately, I’ve had several wonderful visitors including Lorie, Humphrey and my oldest daughter, Rosie.
After completing all three palliative radiation therapy (RT) sessions targeting the tumor next to my T8 vertebrae, I plan on going home this coming Monday. Today I had the second RT session without incident.
Assuming all goes well, we have already made arrangements for hospice to come to our house. They will help us achieve the following goals of their care: (a) to help relieve my pain and suffering; (b) to make possible a “good” death; (c) to help Lorie and our daughters; (d) to assist in the search for meaning.
On Monday, I was able to complete the remainder of my magnetic resonance imaging (MRI) scan without further issue. Not surprising given that MRI imaging is an exceedingly safe technique with more than 30 million scans being performed every year in the United States. Nonetheless, my bizarre experience during Saturday’s initial attempt still left me a bit apprehensive.
MRI machines use strong magnetic fields and radio waves (radiofrequency energy) to produce images. In fact, the most considerable safety concern in the MRI environment is the effect of the magnetic field on medical devices, implants, and any ferromagnetic objects in the room (clips, coins, body piercings, steel oxygen tanks, etc.) that can become very dangerous projectiles. This is why patients are carefully screened by a qualified healthcare professional even before entering the MRI environment.
Before Saturday, I was familiar with the potential magnetic field concerns of an MRI but unaware of the bio-effects of radiofrequency fields (RF) that can cause tissue heating in the human body. All of my prior MRI imaging took place on the tried-and-true 1.5 Tesla (1.5T) machines versus the 3.0 Tesla (3.0T) used on Saturday (note: Tesla is the unit of measurement quantifying the strength of a magnetic field). A 3.0T MRI provides higher clarity and better detail because the magnetic field is twice as strong as 1.5T. Based on my recent experience, however, the stronger 3.0T MRI may have been just enough for me to sense the increased temperature in my chest and abdomen towards the end of the scan.
Regardless, given the differences between the 3.0T and 1.5T machines and not knowing what to expect in terms of a potential internal warming sensation likely resulted in my having a rather decent panic attack. Stuck in a tube and unexpectedly feeling like you could be boiled from the inside is a bit disconcerting. Technicians already inform patients about what to expect once a contrast agent is injected as part of the MRI procedure. Going forward, additional disclosure to patients about other differences between T3.0 versus T1.5 might help patients avoid unnecessary anxiety.
While there wasn’t a dramatic progression of my cancer based on Saturday’s CT scan of my abdomen/pelvis, the overall picture looked different when combined with the results from the MRI of my spine and the increasing level of pain. Bottom line: a relatively rapid advancement of cancer in the bone occurred. Taxol alone isn’t cutting it; a change in course is recommended.
Accordingly, we are forgoing the last dose of Taxol this week (should have been dosed today…) and moving forward with plans for radiation therapy (RT) to the new tumors next to my T8 and L3 vertebrae. The goal of this round of RT is to alleviate my pain and potentially reduce dependence on steroids, opioids, gabapentin, etc.
In the background, arrangements are being made for me to be seen in the Early Drug Development clinic at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss clinical trial options after I’m discharged from the hospital. Hopefully, this occurs on Friday, which represents the one week mark for my current hospital stay.
Note: I finished this post and went to walk a lap or two around the hospital floor. Turning one of the corners and who do I literally bump into? My wife came to visit me by surprise! I’m just SO darn lucky and blessed to have her by my side now.
On Friday, I had an appointment with Dr. Nancy Lee, my radiation oncologist at Memorial Sloan Kettering-Cancer Center (MSKCC). Upon arrival in the exam room, we discussed the area of increasing, severe pain in my lower left chest/abdomen region.
I was concerned that the pain could be a late gastrointestinal (GI) toxicity from radiotherapy that I received in November 2018 to shrink the lesion on my spleen. GI organs that have classically developed radiation-induced toxicity include the small bowel, liver & biliary system, esophagus, and rectum. But as Dr. Lee produced the CT images used to create the radiation treatment plan on her computer, it was clear that the area responsible for my pain was spared from receiving any significant radiation exposure.
Dr. Lee noticed the
During my urgent care visit, I received stronger pain medications via IV infusion, including Dilaudid® (hydromorphone) and fentanyl. The fentanyl seemed to work better, but the amount of relief was still minimal. I was given a patient-controlled analgesia pump that allowed me to dose as needed (Figure 1).
By early evening, a preliminary review of the abdominal CT scan didn’t reveal any significant issues—at least none that would explain the severe pain. For example, there was some moderate growth in the lesion on my spleen, but nothing that seemed to support the level of discomfort I
In some situations, a CT scan can detect abnormalities better than an MRI, including acute bleeding and bone fractures. By contrast, the resolution of newer MRI’s (3-T versus the standard 1.5T) are best at detecting small/subtle lesions or nerve injuries—so an MRI scan was scheduled for 6:30 pm Saturday.
Even before being diagnosed with cancer, I’ve had numerous MRI scans without any issues. In particular, I’m not claustrophobic and haven’t experienced any significant anxiety while being stuck in a tube for 30-40 minutes. Plus, there are no known biological hazards to humans from being exposed to magnetic fields of the strength used in medical imaging today. The fact that MRI systems don’t use ionizing radiation like other imaging modalities
I made it through the majority of the MRI imaging procedure—before the point where the contrast agent would typically be administered (after approximately 20-minutes). At this point, my chest and abdomen started to feel increasingly warm. It was different from any prior MRI procedure and caused me to alert the medical staff to stop.
The radiofrequency power delivered to tissue during an MRI examination results in heating of patient tissues, but MRI scanners have power limits that keep the radiofrequency power deposition to levels that are safe for most patients. In this regard, metals such as used in electronic medical devices, piercings, and tattoos, have the potential to cause severe burns or other harm within an MR imaging environment. For this reason, individuals are given a screening checklist to identify these issues in advance. In my case, there are no objects in my chest/abdomen region to explain the warm sensation.
My heart and mind raced as I tried to calm down after being removed from the MRI tube. Unfortunately, anxiety got the best of me (as I feared being boiled alive…) and I couldn’t bring myself to finish the procedure. I deeply regretted not requesting a dose of Ativan® (lorazepam) before the MRI.
In the past, I’ve experienced an overall warm, flushed sensation with iodine-based contrast agents during a CT imaging procedure. The feeling is short-lived and not as severe as what I experienced in the MRI. Besides, gadolinium-based contrast agents are used during an MRI procedure, not iodine-based agents. And again, my MRI was halted before the contrast infusion.
Without additional diagnostic information from the MRI, it is difficult to pinpoint the source of my pain. The best option is to complete the remaining ~15-minutes of the MRI with the contrast agent, which hopefully I’ll be able to manage today (Sunday) without issue.
In the meantime, I continue pushing away on my fentanyl pump between getting a few hours of sleep in the hospital. While still in varying amounts of pain, at least it isn’t “constant” as it has been over the past few days. Small progress, but I’ll take it.
The proverb that March comes “in like a lion, out like a lamb” implies that the month is a bridge between seasons, beginning with wild, bitter and blusterous winds and rough weather until winding up with mild breezes and gentler weather by April. So, as we turn the calendar to March, I’m hoping that my recent bouts of severe pain due to cancer progression in my spine diminish and go out like a lamb as the month progresses.
My situation is far from unique. Unfortunately, despite significant advances in oncology, cancer patients still often suffer pain. Also, pain in cancer is not one single entity and often doesn’t respond to one drug (or any drug). Interventional pain management techniques, such as a nerve block, are alternative options that can provide effective pain relief when conventional drugs fail or aren’t well-tolerated.
In addition to my weekly chemotherapy infusion, I had an appointment with Amitabh Gulati, M.D., a board-certified anesthesiologist and chronic pain specialist at Memorial Sloan-Kettering Cancer Center (MSKCC) this past Tuesday. Following a physical exam, and based on the suspicion that the new tumor located to the left of my T8 vertebrae is responsible for the referred pain in my left lower chest wall area, Dr. Gulati recommended an ultrasound-guided, paravertebral nerve block. Dealing with severe pain for weeks, I was ecstatic to learn that he could perform the nerve block immediately.
A nerve block is a procedure where a local anesthetic (a numbing drug), often combined with a steroid (an anti-inflammatory agent), is injected into or around a nerve or into the space around the spinal cord to block pain. After the injection, the nerve is no longer able to relay pain—so the discomfort is relieved for some time.
The spinal cord nerves branch out through openings between your 24 vertebrae and connect to internal organs, muscles, joints, ligaments, tendons and other areas and parts of the body (see Figure 1). For example, the nerves emanating from the T8 vertebrae map to the spleen, which is located near my painful left lower chest wall area. Accordingly, it makes sense that a tumor at T8 could send referred pain to that area.
During the nerve block procedure, the numbing effects of the local anesthetic can be felt almost immediately. This is diagnostic, as it helps the physician determine whether or not they are targeting the right nerves in “real time”. Being in the prone position for the entire procedure; however, it was difficult to reach under my body and confirm exactly which areas of my chest were numb.
Due to the immediate numbing effects of the local anesthetic, I was relatively pain-free after the nerve block procedure. Unfortunately, the impact of the local anesthetic can wear off after 24-hours. It can also take up to two weeks to feel the full results of the steroid. Sure enough, I started experiencing episodes of break-through pain by later the next day. Towards bedtime, I was in severe discomfort again despite taking pain medications.
While monitoring the effects of the nerve block, I am also scheduling an appointment with Dr. Nancy Lee, my radiation oncologist at MSKCC. Recall that back in October 2018, I finished the fifth and final session of radiation therapy to both my L5 and T7 vertebrae. I received a total dose of about 30
Aside from managing my pain, I have two more weekly chemotherapy infusions before the next CT scan around mid-March. Depending on the outcome, I can consider continuing with the paclitaxel monotherapy or getting more aggressive by adding a second agent, such as carboplatin. There are also clinical trials to evaluate.
As always, I hope that taking the time to tell my story will help raise awareness about HPV-related cancers and the importance of vaccinating both young women and men to prevent
An MRI of my spine was taken earlier this week. This was scheduled to gain more insight into the “triangle of pain” that has been causing me severe discomfort for weeks. Compared with prior imaging studies from September/October 2018, the latest MRI showed additional metastases (the spread of cancer) along with both increased and new bone lesions, including a left rib lesion and bilateral iliac bone lesions. Disappointing, but not overly surprising in view of the fact that it has been over four months between spine scans.
Of particular note, there is a new T8 left paravertebral lesion. This could be causing referred pain in my left lower rib area as well as the changes in skin sensation (numbness, pain, etc.). Similar to how the hip/buttock pain I’m experiencing is referred from cancer invasion of the L5 vertebrae and resulting moderate fracture.
Next week, we will meet with a physician at the Spine Clinic at Memorial Sloan-Kettering Cancer Center (MSKCC) to review the MRI scans and pain management options. They are apparently not in any rush to do surgery but want to evaluate my symptoms directly.
With regard to treatment, I’m continuing on the paclitaxel (Taxol®) schedule of three weeks on, one week off. I’m looking forward to next week, which is my “off” week. I still need to commute to NYC for the neurologist appointment, but at least no chemo.
Of course, the highlight of this week was celebrating Lorie’s birthday and Valentine’s Day as a family. Lately, it has been increasingly difficult finding reasons to smile—but as you can see in the photo below, everyone was grinning that day while celebrating a very special woman.
No one has mastered the art of happiness quite like Humphrey, our Golden Retriever. If only we could bottle his positive energy and the laughter he brings our family. You can see him being a goof after a bath and grooming session in the video clip below.
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.”
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!
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.
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.
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.
Call it the Winter Blues, Seasonal Sadness, or whatever. I always found myself feeling sad or blue as the days get shorter and the weather gets colder. Being on chemotherapy doesn’t make the situation any better. Watching the Chicago Bears lose to the Philadelphia Eagles didn’t help.
Since my prior post, I completed my first cycle of chemotherapy (paclitaxel) and started my second cycle on January 2, 2019. Related side effects such as fatigue (extreme tiredness), nausea, taste alteration, and cognitive impairment or ‘chemo brain’ have started to appear. I nap during a good portion of the day and am losing weight from a lack of appetite.
Each morning my pillowcase is covered with silver hair that has fallen out during the night. Being a kind soul, Lorie lint rolls my pillow clean in the morning before I notice. Trying to buy me at least another day of not knowing just how rapidly I’m going bald again. She is such an angel! Worse is the fact that my eyebrows and eyelashes will also fall out.
The bone pain and radiation pneumonitis that emerged in late 2018 remain my biggest challenge. Most days start with a coughing fit that lasts several minutes. This leaves me out of breath and dizzy. I recover in approximately 5-10 minutes and usually have a couple more episodes randomly throughout the day.
I transitioned from a systemic steroid (prednisone) to an inhaler around mid-December. My cough worsened, and I’ve been back on 30mg of prednisone daily for the past week. So far, 30mg of prednisone seems the best at managing my radiation pneumonitis issues. It also helps control my bone pain, although I still require a walking cane to be safe.
Given the aforementioned, our family had a relatively quiet Holiday Season. The highlight was actually staying awake until midnight to welcome the New Year. Perhaps made possible with excess energy from the steroid?
After two more chemo sessions (this week and next), I’ll have a periodic CT scan to determine the effects from two cycles of paclitaxel monotherapy. I’ll provide an update around that time unless anything significant develops in the interim.
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.
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).
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:
- X-ray at urgent care suggesting pneumonia
- Shortness of breath
- Non-productive cough
- Low-grade fever
- 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.
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!
“Birthdays are good for you. Statistics show that the people who have the most live the longest.”—Reverend Larry Lorenzoni
I’ve never been a big birthday person. However, I have enjoyed celebrating some of my more significant age milestones so far—16, 18, 21, 30, and maybe even 40. But somehow approaching the big 5-0 tomorrow seems different; more momentous.
It may sound morbid, but my first thought was “at least now I won’t die in my forties.” Making it to 50 somehow sounds better. At my worst in the summer of 2017, Lorie and I were convinced that I’d never even see my 49th birthday.
I’m not sure what makes turning 50 so unique. Perhaps it’s because I’ve finally settled into my skin, even if I have a hard time recognizing my reflection in the mirror these days.
Or maybe after reading and reflecting on mortality during the past three years, it is comforting to see progress in breaking down the cultural silence around death and dying. For example, in recent years, there has been a slew of books authored by “expert patients.” Doctors, scientists, and writers who are reflecting on their departure and have sought to show us different, kinder ways of ending (Atul Gawande, Paul Kalanithi, etc.).
This is encouraging. Most popular cultural conversations around cancer focus on survivors and miracles. Their stories should be celebrated, but we don’t hear from terminal cancer patients as often—perhaps they are too sick or too busy to tell them. It’s their stories that may help inspire big questions and positive change.
“There are only two days with fewer than 24 hours in each lifetime, sitting like bookmarks astride our lives: one is celebrated every year, yet it is the other that makes us see living as precious,” writes Kathryn Mannix in her book, With the End in Mind.
Between those bookmarks is where life takes place. When dealing with a terminal condition, some people decide to focus on quality versus quantity of life, rejecting medical options that might negatively impact their body image, cognitive functioning, mental health, fatigue, sleep problems, physical functioning, pain, and more. They have made their peace—if not with cancer, then with their living and their dying. They want their remaining valuable time to consist of more than a war against cancer.
This is where I have been since March 2018, with no systemic anti-cancer treatments, such as chemotherapy, during the period. My only therapy has consisted of externally targeted radiation to several painful metastatic sites on my spine and a bisphosphonate infusion to help strengthen my bones. Also, I’ve had radiation aimed at the tumor on my spleen as well as a few mediastinum/thoracic nodes to alleviate coughing.
The good news is that radiation mainly addressed the pain originating from my spine. However, destruction of the bone by the tumor left little remaining support for the L5 vertebral body, which subsequently progressed to a compression fracture and resulting pain. In a few weeks, I have an appointment with a neurosurgeon at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss options for stabilizing the spine. I’m also meeting with my oncologist to review recent CT scans showing growth in the pulmonary and thoracic nodes.
That’s the rub with cancer. There is always something going on; something else to be done. Another fire to be put out. Fortunately, the majority of my issues have been manageable with palliative treatment thus far. Indeed, nothing to stand in the way of some upcoming speaking opportunities or tomorrow’s quiet birthday celebration with Lorie and the girls (and our small petting zoo).
We even started my birthday celebration a little early last night. The November evening was cold and dry, which made it possible to use the barbeque one more time this season. So, I grilled some steaks Lorie got from the store, and we had a delicious homecooked meal that everyone seemed to enjoy. Despite my stomach upset and taste issues, I was able to eat about half my usual serving (par for the course these days).
Hopefully, last night is a good omen for what life has in store for me after turning 50. Until then, I’m just going to keep enjoying each day as it comes.
Thanks in advance to everyone for the birthday thoughts and wishes!
Pop the champagne! Today is the publication of my hundredth (100th) blog post for My Cancer Journey.
I still remember typing the inaugural post on November 25, 2015. That was the day I first discovered a suspicious lump on the right side of my neck. In many ways, it feels like yesterday. In other ways, it seems so very long ago.
At the time, I opted to start blogging versus keeping a private journal about my experience with Stage IV oropharyngeal cancer after being formally diagnosed in December 2015. Beyond finding writing cathartic, blogging allowed me to efficiently keep family and friends updated about my disease progression and treatments.
Blogging is a unique experience. And it isn’t for everyone. Sharing your personal thoughts and feelings with the whole world can be unnerving. In the beginning, I often wondered if anyone was even reading my material. Maybe my words weren’t reaching or inspiring anyone. Was I wasting my precious remaining time putting words into the ether?
But over the past nearly three years, I’ve heard from so many of you who have been following my blog and leaving comments after my articles. I’ve even been able to meet some of you. Traffic to my blog has grown substantially. All of this inspires me to keep publishing, to put myself out there, with the hope that my words might be making a difference to somebody.
While I’ve always enjoyed writing, it’s now quite valuable. When fatigue or pain restrict my physical activities, I can usually still muster the energy to write. And like everything else I do in life, I write—with a purpose! Raising awareness for the human papillomavirus (HPV) and its connection to six different cancers, advocating for preteen HPV vaccination, fighting for patient literacy, rights, safety, and more.
Having such a purpose is critical to me. Being a productive member of society, or just being able to go out and do normal things, can make all the difference to a cancer patient. Throughout my journey, cancer has robbed my family and me of many “normal” aspects of life—loss of work, income, physical stamina, future plans, and much more. I’m sure others feel the same.
I used to think that my purpose in life was to develop new medicines and bring them to patients who need them. And it was a very fulfilling job. But cancer gave me a new walk, a new purpose. One that I never saw coming. And so far, no other activity compares with the level of personal satisfaction and self-esteem derived from my current role as an expert patient.
And every time I think that I’ve run out of things to do or say, my cancer journey takes a new turn, and the words continue to flow. Next week I’m scheduled for an additional radiation session targeted to my spleen tumor at Memorial Sloan-Kettering Cancer Center (MSKCC). I will also have another MRI of my spine, as the recent radiation treatment didn’t completely knock out my pain.
Until the next post, thank you for reading my blog and for your interest in me and my cancer journey!
On Wednesday, I finished my fifth and final session of radiation therapy to my troublesome spine tumors at L5 and T7. I received a total of about 30 gray (Gy) to each spine site, which is the unit for radiation measurement of absorbed dose. As hoped, the treatment already alleviated some of my more severe pain, which should only improve as the radiation continues to exert its effects and decrease the size of the targeted tumors.
With a background in radiopharmaceuticals, I’ve been a strong proponent of radiation therapy for some time. Despite the improvement in surgical techniques and advances in systemic therapies, management of patients with metastatic bone disease remains a powerful cornerstone for the radiation oncologist. Nothing works quite like radiation to reduce bone pain!
That same day, I also received an intravenous infusion of Zometa® (zoledronic acid). The drug belongs to a class of bone-strengthening agents called bisphosphonates. Zometa used to both prevent and treat skeletal complications in patients with bone metastases due to all solid tumors.
Within three days after zoledronic acid injection administration, an acute phase reaction has been reported in some patients. Symptoms may include fever, fatigue, bone pain and/or joint pain, muscle pain, chills, and influenza-like illness.
Sure enough, about 4 am ET Thursday morning I could not keep warm in bed despite layering several blankets (and a 90-pound golden retriever). I was shivering but didn’t have a fever. The buttock discomfort also came raging back, but this pain flare phenomenon is common with both radiation therapy and bisphosphonate use. I couldn’t do much at all yesterday concerning activity, but the symptoms usually resolve within a few days, and today (Friday) I’m already feeling better.
During my appointment on Wednesday, I also had a treatment planning procedure called a simulation for more radiation therapy targeting my spleen (I received about 9 Gy in a single session last time). The simulation is where your treatment site is mapped so you get the right dose of radiation directed to cancer with minimal exposure to nearby healthy tissue. During the procedure, my torso was marked with permanent little tattoo dots and CT scans were taken to identify the area that will be treated in subsequent visits. As of now, the spleen radiation is set for five sessions/appointments at MSKCC in late October.
Importantly, during Wednesday’s visit, I also received the annual influenza vaccine. While you should get the flu shot to protect yourself against the virus, it is also important to help protect many immune compromised cancer patients (and others at risk) who use public transportation and are constantly exposed to people sneezing and coughing. PLEASE get your flu shot today to help protect them (and do it for you!).
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.
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!
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.
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.
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.
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…
“Arriving at my hotel room in Princeton a short while later, I wept and wept for what I saw that day and all the people who had died, a final tally I didn’t yet know. All that I wanted was to be home and hug my family. The next morning, with air travel still grounded, I decided to get in my rental car and drive more than 13 hours straight home to be with my family.” — Michael D. Becker, A Walk with Purpose
Many Americans recall precisely what they were doing the morning of September 11, 2001. Still living in Chicago at the time, a business trip brought me to New York that fateful day.
We were in the process of buying a home in rural, beautiful Bucks County, Pennsylvania in connection with my new job. The home we just purchased was a quick 20-minute drive to the company’s headquarters in Princeton, New Jersey.
We didn’t appreciate that Bucks County was also a popular commuter town for New York City workers, which came in handy when I started working in NYC later in my career. People live in Bucks County because they prefer the aesthetics and/or the economics of living in the country, despite the hassles of commuting back-and-forth to NYC.
Nearly 3,000 people were killed in New York City, Washington, DC and outside of Shanksville, Pennsylvania during the Sept. 11 terror attacks. Our local community was hit hard, with the loss of 18 souls from Bucks County.
As a result, The Garden of Reflection 9-11 Memorial was created to remember and honor all of the victims from September 11, 2001. After years of fundraising and construction, the Memorial opened with a dedication ceremony in 2006.
The Garden of Reflection is a short distance from our house, so it is a favorite destination when I take our pup Humphrey for a walk. During most visits, it is merely a peaceful place for self-reflection that I enjoy immensely. As Confucius said, “By three methods may we learn wisdom: first, by reflection, which is the noblest; second, by imitation, which is the easiest; and third, by experience, which is the most bitter”.
On the anniversary of 9-11, however, the Memorial is a sacred place where people come together to honor, remember and celebrate the lives of all we lost. The grounds include all of the victims’ names etched in glass railings and twin lighted fountains reminiscent of the landmark Twin Towers that were destroyed in the attacks.
With a budding interest in photography, I attempted to capture the 9-11 Memorial at sunset in July 2012. It was a beautiful day, and I came fully prepared with a tripod, lens filters, and additional camera equipment.
I was pleasantly surprised after returning home and viewing the resulting photos on my computer screen. The setting sun was centered between the twin fountains and cast long, dark shadows that resembled the World Trade Center towers. The sun also nicely backlit the 18 local victims’ names etched in glass panels along the inner railing.
I’m not sure that I’ll ever fully grasp how the Sept. 11 terror attacks forever changed me. The sights, smells, and sounds of that day are permanently etched into my memory. One thing is certain—just like cancer, the events of 9-11 helped me to look at life in new ways and focused a spotlight on what really matters most.
It’s a common misperception that the human papillomavirus (HPV) vaccine is intended only for females. However, new data makes it alarmingly clear why both boys and girls should receive this critical cancer-preventing vaccination.
What replaced cervical cancer as the most common cancer associated with HPV infection in the United States? Oropharyngeal (head/neck) squamous cell carcinoma (SCC) in men, according to the August 24, 2018 edition of the Morbidity and Mortality Weekly Report (MMWR) by the Centers for Disease Control and Prevention (CDC).
From 1999–2015, cervical cancer incidence rates decreased by 1.6% per year on average, going from 13,125 in 1999 to 11,788 in 2015. During this same period, oropharyngeal SCC incidence rates increased by 2.7% per year on average among men, more than doubling from 6,966 in 1999 to 15,479 in 2015. See Figure 1.
The decline in cervical cancer from 1999 to 2015 is the continuation of a favorable trend since the 1960s when cervical-vaginal screening increased significantly as Americans endorsed the Pap test. The incidence of cervical cancer plummeted from 21.6 per 100,000 women in 1969 to 10.4 per 100,000 in 1990. According to the latest CDC report, the rate of cervical cancer further declined to 7.2 per 100,000 women in 2015.
Early detection through routine screening has reduced the death rates from cervical (via Pap test), breast (via mammogram), and other cancers. Currently, there is no routine screening test for HPV-associated diseases other than cervical cancer. Oral dental screening may detect cancer or precancerous lesions that may lead to oropharyngeal SCC at an early stage. However, it is difficult to determine from a visual examination which abnormal tissues in the mouth are worthy of concern. The average person routinely has conditions existing in their mouths that mimic the appearance of pre-cancerous changes, which could lead to unnecessary biopsies and invasive testing.
To prevent HPV-related cancers and other ailments, HPV vaccination was added to the routine immunization program for US females in 2006 and the program for US males in 2011. See Figure 2. But as of 2017, only 49 percent of adolescents (53.1% of females; 44.3% of males) received all the recommended doses to complete the HPV vaccination series. That is less than a 5% increase from 2016 when 43.4% of adolescents (49.5% of females; 37.5% of males) were up to date with the HPV vaccination series.
The combination of comparably lower vaccination rates with a lack of screening tools is helping fuel the oropharyngeal SCC epidemic among males. Continuing at its current growth rate, the annual new cases of oropharyngeal SCC in men could reach 17,685 by 2020 and 20,204 by 2025.
The CDC estimates that nearly 80 million Americans are currently infected with some type of HPV, with about 14 million people newly infected each year. If your preteen (boys and girls) hasn’t been vaccinated against this cancer-causing virus yet, talk to their doctor or nurse about getting it for them as soon as possible and please read my passionate plea to parents of preteens.
In my prior post, I discussed a worsening cough and recommendation from my oncologist, Dr. David Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), to consider stereotactic body radiation therapy or SBRT. This treatment is designed to deliver extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue.
My radiation oncologist, Dr. Nancy Lee at MSKCC, developed a treatment plan using SBRT to target single tumor sites in each of my lungs and spleen. Starting with my left lung, the first treatment took place Monday, July 23, 2018, and continued on Wednesday and Friday of that same week. The same schedule was used the following week for my right lung. A single SBRT session was used to target the lesion on my spleen, which was completed last Wednesday, August 15, 2018.
The unit for radiation measurement of absorbed dose is “gray” (Gy). I received a total of about 27 Gy to each lung site (9 Gy per session / 3 sessions) and about 9 Gy to my spleen in a single session. In contrast, I received about 70 Gy to my head/neck over the course of 7 weeks back in early 2016 as part of my conventional chemoradiation treatment.
With SBRT, only a small area of your body is exposed to radiation. This means that SBRT usually causes fewer side effects than other types of radiation therapy. According to patient education materials provided by MSKCC, about half of the people who have SBRT don’t have any side effects from treatment.
So far, the SBRT “experience” has been exactly as billed. Other than post-traumatic stress from going through the radiation procedure again, along with some mild fatigue, I haven’t experienced any significant side effects from SBRT. Encouragingly, my cough has already diminished both in frequency and severity. So, the radiation is likely doing its job of shrinking tumors that may be obstructing my airway.
Towards the end of September, I’ll have another CT scan to see how the radiated (and non-radiated) tumors responded to the SBRT. Radiation can cause inflammation in the short-term, which hampers the interpretation of scan results. Accordingly, it is prudent to wait at least a month before imaging.
Until then, I’m continuing my human papillomavirus (HPV) awareness activities and encouraging vaccination of preteen boys and girls to help prevent six cancers linked to HPV. Sadly, there is still a lot of room for improvement in vaccination rates.
In 2017, nearly 49 percent of adolescents received all the recommended doses to complete the HPV vaccination series according to a new study. This is less than a 5% increase from 2016 when 43.4% of adolescents (49.5% of females; 37.5% of males) were up to date with the HPV vaccination series. Today, 51 percent of adolescents still have not completed the HPV vaccine series!
To be meaningful, HPV vaccination rates need to be closer to the Centers for Disease Control and Prevention’s (CDC) Healthy People 2020 target of 80 percent coverage. This isn’t unrealistic, as around 80 percent of adolescents receive two other recommended vaccines—a vaccine to prevent meningococcus, which causes bloodstream infections and meningitis, and the Tdap vaccine to prevent tetanus, diphtheria, and pertussis.
Parents, I beg you again—please vaccinate your children against HPV.
As I compose this post, I cannot get the 1985 song “Radioactive” by English rock band The Firm out of my mind. But perhaps this will make more sense in a moment.
At the end of June 2018, I announced my intent to remain off cancer treatment. A decision so complex that it couldn’t be adequately addressed in a blog post. Simply put, after going through three very difficult therapies from 2016-2018, I decided to emphasize the quality of life over quantity of life.
My last palliative systemic treatment consisted of nine cycles/months of combination chemotherapy (carboplatin and paclitaxel). For a while, it significantly reduced the size of tumors in my lungs and spleen. Most importantly, it prolonged my life—and for that, I am very grateful.
But most cancer treatments are associated with toxicities, which can range from mild to severe. For example, my initial treatment consisted of daily radiation to my head/neck in combination with chemotherapy and was brutal with regard to side effects. In exchange for these toxicities, however, chemoradiation offered the “potential” for a cure at the time. It seemed like a fair trade.
Once my disease spread (metastasized) to distant sites, including my lungs and spleen, the intent of treatment switched from curative to palliative—providing relief from disease symptoms and helping me live longer. Accordingly, I became less willing to endure the side effects of palliative systemic treatment (chemotherapy, cetuximab, etc.) with cure no longer a likely option. This largely resulted in my decision to discontinue treatment.
However, I discussed my worsening cough during a recent appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN. Absent chemotherapy, the tumors in my lungs continue to grow and create additional problems—chronic coughing, wheezing, shortness of breath, etc. To address my cough, Dr. Pfister introduced the concept of stereotactic body radiation therapy, or SBRT, to deliver extremely precise, very intense doses of radiation to cancer cells while minimizing damage to healthy tissue.
For more than a century, radiotherapy has been an effective treatment for cancer patients. But the new millennium saw the affirmation of SBRT, especially for the treatment of metastatic tumors. In fact, select patients with limited metastases treated with SBRT are long-term survivors.
During a follow-up appointment with my radiation oncologist, Dr. Nancy Lee at MSKCC, she informed me that SBRT is associated with fewer side effects than the conventional radiation therapy I received as part of my initial treatment back in 2016. Conventionally fractionated radiation involves low-dose fractions given once a day (e.g., 10–30 fractions of 1.8–3 Gy each), while SBRT involves giving smaller numbers of higher-dose fractions (e.g., 1–5 fractions of 6–30 Gy each). Accordingly, SBRT can usually be given in five or fewer daily sessions within a week. Fast, safe, and effective—there was a lot to like about SBRT.
SBRT involves the use of sophisticated image guidance that pinpoints the exact three-dimensional location of a tumor so that the radiation can be more precisely delivered to cancer cells. Adverse events associated with SBRT can include pneumonitis, cough, pain, esophagitis, and dermatitis. However, severe toxicities (Grade 3 and 4) are fairly uncommon, occurring in 5% to 10% of patients after SBRT.
Possibly due to my background working with radiopharmaceuticals, I’ve long been interested in the role of radiation therapy beyond its cytotoxic effects. Radiation therapy interacts with cancer and immune system through a variety of mechanisms. It promotes the release of tumor neoantigens during cancer cell death in addition to stimulating immune adjuvant effects, engaging the two key arms of the immune system and functioning like an in situ vaccine, generating tumor-specific T cells.
In fact, localized radiation can infrequently trigger systemic antitumor effects, called the “abscopal effect.” Recent studies presented at ASCO 2018 have explored SBRT in combination with checkpoint inhibitors to potentially improve the abscopal effect with mixed results.
In one study, cancer patients were treated with SBRT and at least 1 cycle of pembrolizumab. Results of the study showed an abscopal response defined by 30% reduction in any single non-irradiated measurable lesion was present in 27% of patients, but only 13% of patients when defined by a 30% reduction in aggregate diameter of non-irradiated measurable lesions. It is difficult from these data to separate out whether the effects seen were because of the combination or from SBRT alone.
In another study, head/neck cancer patients with at least two measurable lesions were randomized to either nivolumab alone for 2 cycles or nivolumab with SBRT to a single lesion (9 Gy x 3) between the 1st and 2nd doses of nivolumab. While safe, the addition of SBRT to nivolumab failed to improve objective response rate (ORR), progression-free survival (PFS), or overall survival (OS).
For now, a treatment plan was developed using SBRT to target tumor sites in each of my lungs. Starting with my left lung, the treatment takes place Monday, Wednesday, and Friday of this week. The same schedule will be used next week for my right lung. For reasons still unclear, questions remain regarding the use of SBRT to also target the lesion on my spleen.
Yesterday was my first SBRT session. Lorie stopped me for a quick kiss before I disappeared into the men’s locker room at MSKCC to change clothes. It was traumatic to see the same rooms and equipment from my prior chemoradiation experience. And while my body needs to be kept in the same position for each treatment, thankfully this is accomplished through the use of a mold of my back instead of being pinned to the table by a face/shoulder mask like last time.
The SBRT session was quick and painless. I thought readers might enjoy seeing what the process is like, so embedded in this post is a brief time-lapse video of me holding still on the table in my shorts and shoes as the linear accelerator components twirl around me.
I’ll update the blog with any significant updates on my SBRT experience. For now, I’m simply hoping to get some relief from coughing.