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.
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.
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.
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.
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.
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…
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!
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.
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.
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.
Last week, I underwent my first CT scan since stopping chemotherapy in March 2018. It would have been surprising for the tumors in my lungs and spleen to remain unchanged in size during this period. Nonetheless, I admit to secretly hoping that there was little or no growth.
Instead, all of my existing tumors roughly doubled in size. In my lungs, several nodules that measured one centimeter in diameter are now two centimeters. Cancer in my spleen grew from two centimeters to four centimeters.
A few new spots also appeared. In particular, in the mediastinum and thoracic nodes near the heart, thymus gland, windpipe, and large blood vessels.
In other words, cancer resumed its growth in the absence of chemotherapy.
However, with a taste of life without the toxic effects of chemo – I don’t want to go back. A point that I made in the recent Forbes article and video The Art of Dying.
In keeping with that theme, I’ve decided to remain off treatment. The obvious result is that cancer will continue to grow unabated. It wasn’t an easy decision, and it wasn’t made in a vacuum.
During today’s appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) with my oncologist, Dr. David Pfister, and Nicole Leonhart, ANP, RN, we discussed a lot of topics: How quickly will my disease progress? When will my quality of life diminish? How long until I die?
All valid questions, but each very difficult to answer. I already witnessed the perils of making such predictions last summer when I didn’t expect to see my 49th birthday. And yet, here I am – having just enjoyed the best several months since first being diagnosed in late 2015.
When my treatment changed from curative to palliative intent, I knew that cancer would likely claim my life. It didn’t stop me from living. In fact, in many ways it made me appreciate life even more.
Some readers will offer battle/combat analogies. “You can still beat this.” “Keep fighting.” “Don’t give up.”
Fighting words may help some people, but I prefer to embrace acceptance. My patient advocacy efforts, such as raising awareness for the human papillomavirus (HPV) and various cancers it can cause (including mine…), are not made more or less successful based on my disease outcome.
Throughout my life, I did things my way (cue Frank Sinatra). And I don’t plan on changing that now. I feel good and plan on enjoying it for as long as it lasts. Quality, not quantity, of life, is what matters most to me now.
Eventually, my disease will progress and pose a problem. But not today or perhaps even tomorrow. So, until then, I’m going to continue savoring experiences and my remaining time. I’ve had a fantastic life and will continue to greet each new day as a gift.
The past week is a blur. It started last Saturday with the airing of a national television segment on CBS during both their morning and evening broadcasts. Reported by Dr. Jon LaPook, Chief Medical Correspondent for CBS News, the show highlighted the recent rise in head/neck cancer in men due to “oral” human papillomavirus (HPV) and featured my story as an example. Special thanks to everyone who played a role in creating this important segment! A replay is available below:
On Monday, I traveled to Washington, DC via train to speak at the Rare Disease Legislative Advocates 2018 Legislative Conference in the session titled, “Right to Try – Is it a Solution?” I haven’t been shy about my cynical perspective on this pending legislation. You can learn more by reading my opinion article on the topic (click here) and listening to a replay of my interview with NPR’s Scott Simon (click here).
Tuesday morning marked the beginning of my ninth cycle of chemotherapy at Memorial Sloan-Kettering Cancer Center (MSKCC) in NYC, which will slow me down a bit. Recall that each chemotherapy cycle is four weeks, beginning with both carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover. Towards the end of March, I’ll have another CT scan to determine if my disease is still stable or progressing. In this regard, I’m hoping March indeed goes out like a lamb!
In the meantime, I’m participating in several additional media opportunities to help tell my story and create more awareness for HPV and its link to cancer in both men and women. Interestingly, the International Papillomavirus Society (IPVS) has declared this Sunday, March 4th as “International HPV Awareness Day” to promote awareness of and education around HPV infection, how it spreads, and how HPV infection and the cancers it causes can be prevented. Click here for more information.
It started with a runny nose and sneezing last weekend. Then came a cough and a mild fever that never went above 99.7 Fahrenheit – that is until the following Wednesday. A brief telephone discussion with the doctor on call late that evening confirmed that a trip to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility was in order.
Following my latest round of chemotherapy, a fever of 100.4 Fahrenheit or higher is disconcerting. It could signal that I’m neutropenic – running dangerously low on a type of white blood cell (neutrophils) that serve as the body’s primary defense against acute bacterial and certain fungal infections. The chemotherapy I’ve been receiving can reduce the number of neutrophils circulating in the blood. Alternatively, a fever could be associated with the flu, which is particularly dangerous this season and breaking records.
Lorie and I started packing for an overnight stay at the MSKCC “bed and breakfast” as we like to call it. Before heading out, I hugged each of our dogs – just in case. Unfortunately, that simple action set into motion a rush of feelings and steady stream of tears down my cheeks. I was a total mess by the time Lorie backed the car out from the garage. Our daughters weren’t home at the time, which in retrospect was probably best.
Upon arrival at urgent care just before midnight, a series of tests were ordered – blood work, urine, chest x-ray, and nasal swab to test for influenza. The blood work came back first and my absolute neutrophil count (ANC) was 800 cells per microliter of blood. With an ANC below 1,000 cells per microliter of blood, the risk of infection increases. Combined with my fever, the medical team informed me that I was going to be admitted to the hospital and given a broad spectrum, intravenous antibiotic Zosyn® (piperacillin and tazobactam).
One by one, the other test results came back normal – that is until the nasal swab revealed I was positive for Influenza B. Influenza A and B are the two main types that routinely spread in humans and cause seasonal flu epidemics. Fortunately, I had received a flu shot this season, as this can help reduce the severity of the virus.
Alas, being hospitalized ended the longest “uneventful” streak of my cancer experience. But for six glorious months, living with cancer was relatively dull and boring. And it was wonderful.
With the source of my fever identified as the flu, I was prescribed Tamiflu® (oseltamivir phosphate) and the general plan was to release me from the hospital as soon as my ANC returned to 1,000 or higher. My prior chemotherapy was given on January 30th, so its adverse effect on my blood counts should be diminishing. Patients often have their lowest number (called a nadir) and highest risk of infection around 7 to 10 days after the start of chemotherapy.
By Friday, my ANC rebounded slightly to 700. Heading in the right direction, but still below the 1,000-level needed for my release home. I felt much better than when I was admitted, which was frustrating. In fact, the fever went away as did a runny nose, sneezing, and coughing.
A repeat blood test was scheduled for very early Saturday morning, with the expectation that my ANC would finally rise above 1,000 and we’d be sent home. Or so I hoped. But the test results showed a slight decrease from the prior day to 600.
I was then given a shot of Neupogen® (filgrastim), which works like a natural protein in your body to promote the growth of new white blood cells. Interestingly, Neupogen was among the very first biotechnology products that I learned about during my introduction to the sector in the late 1990s. It was approved by the Food and Drug Administration (FDA) back in 1991.
My blood counts will continue to be monitored until the ANC improves, but sometimes it can take 24-hours to see the effect of Neupogen. And so, we wait.
In my prior post, I referenced that more and more terminal cancer patients are placing their most private, personal journeys in this entirely public, impersonal domain we call the Internet. Among the blogs about fashion, food, home design, travel, and others, numerous blogs about severe disease and dying have appeared in recent years.
Personally, I find that writing a cancer blog is cathartic – and I’ve been doing it for more than two years now. It’s a great way to share updates and information quickly and efficiently to others who are interested in your health. Blogs and participation in other online patient forums also make the experiences of cancer illness publicly visible, provide alternative voices to that of the medical expertise, and challenge the traditional patient-doctor relations. What a remarkable era for patient advocacy.
But maintaining open and honest communication with your health professionals is an essential part of the cancer patient’s care. Doctors, nurses and patients work best together when they can talk honestly and openly with one another. In this regard, it is essential that patients avoid blogging or posting anything on social media that could jeopardize this relationship. When in doubt, discuss material and images that you plan on blogging with them in advance – especially when the information pertains to participation in an ongoing clinical trial where sensitivities to confidential data may exist.
So far, healthcare professionals have embraced my public visibility. For example, I first met my incredible medical oncologist, Dr. David G. Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC), in December 2015. Since that time, I published my memoir, more than 75 cancer blog posts, and three opinion editorials in various media outlets. It’s probably safe to say that I’ve been among his more “uniquely” visible patients during the past two years. But Dr. Pfister and others at MSKCC, along with my team at the National Institutes of Health (NIH), have mainly been accepting and supportive of my blog, book, and photojournalism. And, for the first time, my wife Lorie was even able to snap a quick photo of me with Dr. Pfister this week that I will treasure.
On the topic of this week’s appointment, we reviewed the CT scan results from last Friday’s imaging session. As updated briefly via social media, the results were favorable – stable disease (there were no new sites of disease, and the existing tumors stayed about the same size from the prior scan). Growth in the current tumors or new sites of disease would indicate disease progression and likely necessitate switching therapies. Since that wasn’t the case, and since I’ve handled chemo well with no neuropathy or need for growth factors, the plan is to continue with my current chemotherapy regimen. It consists of a four-week cycle starting with carboplatin and paclitaxel on week one, paclitaxel only for week two, and then no treatment for weeks three and four to allow blood counts to recover. I’ll have two more cycles and then do another CT scan around the second week of April 2018.
After the meeting with Dr. Pfister, I started my eighth cycle of this chemo regimen and was back home by late afternoon. The purpose of this treatment is palliative – to keep the tumors in my lungs and other organs from growing to a point where they cause pain, breathing difficulty, and other issues. It is different from care to cure your illness, called curative treatment.
When treatment is palliative, some patients may feel uncomfortable asking their doctor, “How long do you think I have to live?” The truth is that this question is often awkward for doctors too. Nonetheless, it is a question on the mind of many terminal cancer patients – including me.
Every patient is different, and a statistical prognosis is just an estimate, not a firm prediction. For example, last summer I was in terrible shape (two chest tubes, progressive disease, blood clot and bleeding issues, rapid heart rate requiring a stay in the ICU, etc.). The prognosis at that time was grim, and I wasn’t expected to live more than a few months.
But, effective treatments can sometimes dramatically improve a person’s well-being and even survival. After starting chemotherapy again, cancer regressed, and both chest tubes were removed as the fluid in my lung cleared. My heart rate has been stable since starting medication. I celebrated my birthday, Megan’s birthday, holidays, and welcomed the New Year. It’s now likely that I will be there for Lorie and Rosie’s birthdays next month and even our 26th wedding anniversary in March. I have been given additional precious time.
My disease is still likely incurable, and the current statistical prognosis indicates a median life expectancy of less than one year. I suffer from fatigue, anxiety, depression and other issues that negatively impact my quality of life. Knowing my prognosis, however, is helpful for guiding critical personal plans and life decisions.
I believe that blogging about life with a terminal illness can offer unique insights into how it is to live with cancer and to face the final phase of life. Hidden away and sequestered, removed from everyday experience, death has made a mediated return to the public sphere through digital and networked media.
What a relief that the weather for yesterday’s periodic commute to New York for chemotherapy was much warmer than the bone-chilling, windy backdrop of the past several days. Even more pleasant was a punctual public transportation commute, which got me to my appointment at Memorial Sloan-Kettering Cancer Center (MSKCC) on time. Work on the signals and tracks at NY Penn Station frequently delayed my trains in recent weeks, so I never know quite what to expect these days.
My blood counts were amenable to the scheduled dose of chemotherapy, which was infused as planned. My positive transportation karma continued, and I was back home resting in Pennsylvania by mid-afternoon. No more treatment until after my CT scan later this month for an update on my disease status (queue “scanxiety”).
Traveling alone, I took time during my commute to listen to music on my headphones and catch up on news events. Scrolling through my Twitter feed, I came across the fact that January is Cervical Cancer Awareness Month. It caught my eye, as cervical cancer and oropharyngeal cancer (tongue, throat, and tonsil – as in my particular diagnosis) collectively account for more than two-thirds of the cancer cases caused by high-risk human papillomavirus (HPV) infection. According to the CDC, more than 30,000 new cancers attributable to HPV infection are diagnosed each year.
For most people exposed to HPV, the virus goes away on its own, but a small group of people will experience health problems — sometimes even 20 or 30 years after the initial contact — and go on to develop cancer. In these individuals, HPV can cause changes in the body that can lead to the development of:
Cervical, vaginal and vulvar cancer in women;
Penile cancer in men; and
Oropharyngeal (the tongue, tonsils, and back of the throat), anal, and rectal cancer in both women and men.
So, with PLENTY of room for progress in vaccinating both girls and boys against HPV, please schedule a time to talk to your pediatrician now to eradicate this cancer-causing virus.
PS – There is undoubtedly a role for gender-specific cancer awareness activities, such as Cervical Cancer Awareness Month. From pink ribbons to professional sports apparel, breast cancer awareness advocates have done a fantastic job spreading the word that October is National Breast Cancer Awareness Month. But each September, during National Prostate Cancer Awareness Month, the color blue doesn’t consume the country with the same vigor. And reduced awareness correlates with less money*, as prostate cancer research receives less than half of the funding as breast cancer research from the American Cancer Society. On this note, perhaps it is time to at least consider “HPV-Related Cancer Awareness Month” or something gender neutral?
Early this morning, my youngest daughter Megan and I arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) to start round number seven of my current chemotherapy regimen (a combination of carboplatin and paclitaxel). What a fun way to welcome 2018!
Each treatment appointment is preceded by a blood test to look at the levels of various components (red blood cells, white blood cells, platelets, electrolytes, etc.). Not surprisingly, all of my counts were good enough to warrant treatment today as planned after a two-week break at the end of December 2017.
Knowing today might be a bit crazy, I had scheduled an early morning appointment to try and get ahead of any delays. We arrived a few minutes before my 7:45 am ET blood test and ended up catching the 12:20 pm ET train from New York to return home. Everything went fine with treatment, although I don’t usually start feeling the side effects for a few days.
The best news of the week was being able to spend New Year’s Eve celebrating with my wife, Lorie. Actually, “celebrating” might be a strong word–unless you expand the definition to include sitting on the couch watching Dick Clark’s New Year’s Rockin’ Eve with Ryan Seacrest and going to bed before midnight. But, we were together for yet another milestone. One that, frankly, I was quite surprised to see.
To my family, friends, colleagues, researchers, health care providers, members of the media and anyone reading this blog post–thank you for your interest in my cancer patient journey. I wouldn’t be here today without such a robust support network. Best wishes for good health, plenty of happiness, and much prosperity in 2018 and beyond to all of you!
Yesterday marked the beginning of cycle number six for my third-line chemotherapy treatment. In this regimen, one full cycle is comprised of four weeks. During week one, two different chemotherapeutics (carboplatin and paclitaxel) are given along with the requisite premedication (steroid, anti-nausea meds, and an antihistamine). During both the second and third weeks of a cycle, I receive only one chemotherapeutic (paclitaxel) and the same premeds. Week four is a holiday/break, with no scheduled treatment that helps provide recovery time for blood counts and other markers. Then the four-week cycle repeats.
Having received five cycles over the past five months, my blood counts are slower to recover – particularly my white blood cells. As a result, my medical oncologist (Dr. David Pfister at Memorial Sloan-Kettering Cancer Center (MSKCC)) modified the last treatment to forgo the third week of chemo since that is usually about the time that my white blood cells are on the low side. In other words, the most recent two cycles of treatment have been “two weeks on, two weeks off” meaning that I get two chemotherapeutics (carboplatin and paclitaxel) on week one, only paclitaxel on week two and then a two-week break during weeks three and four before starting the cycle over again.
Considering that the latest 2/5 cycles have been reduced in terms of the total amount of chemo I’m receiving, it is encouraging to see that each CT scan still shows decreases in the size of some tumors. For example, take the largest tumor (on my spleen) that originally measured 6.4 cm on its longest axis and 6.0 cm on its shortest axis back in early January 2017. Since starting third-line chemo over the summer, those dimensions have decreased on each subsequent CT scan: 5.4 x 4.8 cm, 3.2 x 2.6 cm and most recently 2.9 x 2.0 cm. Many other lymph nodes in my lungs and abdomen are also now 1 cm x 1 cm or smaller, which is typically the size of a “normal” lymph node—although PET imaging would help inform whether or not there is still disease activity.
But just exactly how unusual or encouraging is all of this? During the MSKCC appointment, I gathered that the general expectation would have been decreased disease from the first treatment cycle, perhaps stable disease on the second cycle and then possibly progressive disease on the third or later cycles. Bottom line: my cancer continued to decrease across all three recent scans, which is better than normally expected.
I’m happy about the results and extremely thankful that I received strong encouragement to give chemotherapy another chance. And it’s not just about tumors shrinking, there have also been meaningful improvements in my quality of life. For instance, at the start of chemotherapy I had not one but two chest tubes placed to help reduce fluid around my left lung. Both have since been removed, as the fluid buildup is gone. Associated side effects with the fluid, such as coughing and difficulty breathing have also disappeared. Oh, and it is a lot easier to shower without wrapping your chest and abdomen in plastic wrap each time to avoid water getting into the tubes!
I’m a curious person by nature and seeking potential answers as to “why” my disease is responding a bit better than expected to the current chemo regimen. As a long-time champion of immunotherapy, I can’t help but wonder about my prior second-line therapy with M7824, an experimental bispecific fully human antibody designed to simultaneously block two immuno-inhibitory pathways (both PD-L1 and TGF-β) that are commonly used by cancer cells to evade the immune system. The aim of this investigational drug is to control tumor growth by restoring and enhancing anti-tumor immune responses.
While receiving M7824 at the National Institutes of Health (NIH) as a participant in their Phase I trial, results from biopsies of both my tumor and pleural fluid provided evidence of immune system activation in the vicinity of the tumor, indicating that the experimental agent M7824 was performing as designed. In particular, the presence of tumor-reactive CD8-positive T-cells, which have emerged as the predominant effector in most cancer immunotherapy settings. In fact, one published study in head and neck cancer patients whose tumors were densely infiltrated by CD3-positive and CD8-positive T cells had a significantly longer overall survival (OS) and progression-free survival (PFS) compared with patients whose tumors were poorly infiltrated.
It’s quite possible that based on the large tumor burden in my body, the immune system activation resulting from M7824 might not have been able to overpower the disease. However, with my tumor burden now having decreased substantially through subsequent chemotherapy, I can’t help but wonder if M7824 could be playing a role in my ongoing disease improvement.
While answering this question is purely academic, it could help inform the design of future combination studies with M7824 and chemotherapy. From a personal perspective, it would also validate that I made the right decision to jump into the M7824 trial after failing first-line therapy (chemoradiation).
As someone with no formal medical training, my initial thought was to have the largest, most accessible tumor biopsied to look for residual immune system activation. Unfortunately, the largest remaining tumor is on my spleen and my oncologist frowned on the prospects of poking needles around that area. A good to time to remind readers that while I have a fair amount of working knowledge in biotech, I always rely upon the wisdom and experience of the treating physician. They’ve gone to med school…I have not.
But I do feel it is very important, to the full extent possible and without substantial added risk to me, to find some signal—even if anecdotal—that M7824 did something good. For my friends in the medical community, please feel free to email me any ideas or thoughts!
 Targeting CD8+ T-cell tolerance for cancer immunotherapy. Stephanie R Jackson, Jinyun Yuan, and Ryan M Teague. Immunotherapy. 2014 Jul; 6(7): 833–852.
 Tumour-infiltrating lymphocytes predict response to definitive chemoradiotherapy in head and neck cancer. P Balermpas, Y Michel, J Wagenblast, O Seitz, C Weiss, F Rödel, C Rödel and E Fokas. British Journal of Cancer (2014) 110, 501–509. doi:10.1038/bjc.2013.640
Earlier this week, I had my periodic CT scan to determine whether or not the chemotherapy I’ve been receiving is continuing to work. I just received word from MSKCC moments ago that indeed many of the tumors continued to shrink compared to my last imaging procedure in August (which showed a decrease in tumor size almost across the board). Importantly, there weren’t any new lung metastasis.
Clearly, this is very good news. In a perfect world, one would like to see all the tumors completely disappear. That would be highly unusual, so I will gladly accept serial decreases in the tumors from period-to-period.
This coming Tuesday, I should receive my chemotherapy doublet (provided that my blood counts are sufficient).
That’s all for now…short and sweet…as I am going to hug my family and enjoy the weekend.
Thankfully, yesterday’s cardiology appointment and weekly chemotherapy session were both uneventful. The mystery fever hasn’t come back and I haven’t had any more rapid heart episodes since my last visit to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility.
Before my first appointment, we had a chance to stop by and say “hello” to Dr. Susan Slovin at MSKCC for a few minutes. She specializes in prostate cancer, clinical immunology, and other genitourinary malignancies. If you’ve read my memoir, you are aware that we’ve known each other for quite some time and that she is a trusted resource and friend. As always, she had some words of wisdom to share and put a smile on our faces. Truly a great start to the day – thank you Dr. Slovin!
The cardiologist did change my medication, as the beta blocker I was taking (metoprolol) also resulted in some fairly low blood pressure readings and lightheadedness when going from a sitting to standing position. But again, minor complaints compared to being in the intensive care unit (ICU) a short while ago. My latest EKG looked fine and I simply need to follow-up in one month.
The consensus seems to be that my rapid heartbeat was caused by a perfect storm consisting of a high fever, low electrolytes, and possible bacterial infection. So, my job is to help make sure not to repeat these circumstances by keeping hydrated and getting plenty of electrolytes.
In terms of chemotherapy, my blood counts are doing well – especially after last week’s doublet of carboplatin and paclitaxel. While I only get carboplatin every three weeks, it does seem to hit me much harder than the paclitaxel alone – especially with regard to appetite. In any event, yesterday’s chemo session went as planned with just the paclitaxel and various premedication.
We finished everything by early evening and planned on staying in NYC overnight rather than rushing to get home. Since I was hungry for a change, Lorie and I went to the hotel’s rooftop bar and enjoyed dinner outside under the stars. It’s moments like those that make everything worth it – and I savor every one.
The rescheduled visit by my sister and her family went well this past weekend. I haven’t made it back to Chicago to see them in a while and I was amazed by how much their two boys had grown since I last saw them. It meant a lot to be able to spend some quality time with all of them and I appreciate their long drive back-and-forth from Illinois to Pennsylvania just to see me (okay, perhaps they really came to see Humphrey…).
The plan for now is continued weekly chemotherapy with a possible break during Labor Day week. Treatment would then resume with an eye towards imaging in early October to see how things are progressing – or perhaps more optimistically “regressing.”
Knock on wood, things will remain calm for a bit as Lorie goes back to work and our girls return to school. It’s always a stressful time for them, so it would be nice for my disease to behave for at least a little while.
Lastly, I recently gave my book website a makeover, so please take a look and let me know what you think at www.awalkwithpurpose.com
Bacterial cultures from the tips of two chest tubes that were recently removed revealed growth of a pseudomonas organism on one of them. These are fairly common pathogens involved in infections acquired in a hospital setting. Whether or not this was the source of my fevers, I was prescribed an antibiotic (levofloxacin, 500mg daily) since pseudomonas can lead to other nasty conditions.
I continued running fevers for a few days after starting the antibiotic, but was free of fever for the 48-hours leading up to my next scheduled chemotherapy round. Aside from the mystery fever, my blood counts have been good throughout the three weeks of chemotherapy that I received thus far. Accordingly, my medical oncologist (Dr. Pfister) supported resuming treatment.
On Tuesday, August 15, 2017, Lorie and I took the early morning train to NY so I could receive an intravenous infusion of paclitaxel and then carboplatin as planned. I was quite anxious to resume treatment after a one week break – especially after seeing the decrease in tumor size from the recent CT scan.
I looked at my blood test results from that morning and noticed my magnesium level was again low. Knowing that this “could” have played a role in the recent cardiac event, and that my daily oral magnesium isn’t keeping up, I requested an additional intravenous course of magnesium just to be safe and the medical staff agreed.
The chemotherapy infusions went well and we were able to take an afternoon Amtrak train back home. Benedryl® is one of the pre-medications they give me, so I slept a good portion of the trip home. Lorie was kind enough to capture me asleep with her phone.
After postponing their prior trip due to my hospitalization, my sister and her family are planning to visit us this weekend. Hopefully life is uneventful and we all get to spend some time together.
It was surreal that exactly one week after being in the intensive care unit (ICU) at Memorial Sloan-Kettering Cancer Center (MSKCC), I felt good enough to participate in a scheduled radio interview conducted in Philadelphia on August 10, 2017. Just goes to show there are good days and there are bad days. NPR member radio station WHYY host Dave Heller knew an awful lot about my book “A Walk with Purpose: Memoir of a Bioentrepreneur” and it was so great working with him during my first experience in a radio recording studio. Please take a moment to listen to a replay of this 20-minute segment and other events, along with reading newspaper and other media reprints, under the “In the News” menu tab at my memoir website by clicking here.
Hopefully I continue to feel okay the next couple of days and look forward to seeing family while in town. It should take a week or so for the latest treatment effects to materialize. If not, however, I’m sure Humphrey will provide them with endless hours of amusement!
I would be remiss if I didn’t mention in closing that the start of the new school season is a great time to schedule an appointment with your pediatrician to talk about an important immunization that could prevent 6 cancers in boys/girls. You can learn more about this vaccine in an earlier blog post by clicking here. Had this vaccine been available when I was a child, it could have prevented the cancer that’s killing me. Start the discussion with your doctor – today! And help spread the word by using the #DiscussHPV hashtag in your social media posts.