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).
For the past few years, I’ve received three separate cancer treatments with little reprieve from many of the associated toxicities. This month, I finished my ninth cycle of therapy – a combination of two chemotherapeutics (carboplatin and paclitaxel). The chemotherapy has significantly reduced the size of tumors in my lungs and spleen, but they have not entirely gone away.
This week, I had my periodic CT scan to assess whether the cancer is progressing, regressing, or continuing to remain stable. The positive results, which came today, show no new metastases (the spread of cancer) and unchanged disease in my spleen and lungs since my last CT scan from January 19, 2018.
After a great deal of consideration, I have decided to take a well-deserved break from treatment. It will allow me to recharge, improve my quality of life, and even allow me to travel and hike. In a few months, I’ll have another CT scan to see how my cancer behaved during the break. I hope that it remains stable or perhaps progresses slightly, although anything is possible during this period. I still recall how quickly I went from “no evidence of disease” to the progression of disease in both lungs and spleen (see accompanying image).
I’m quite proud of everything that I’ve accomplished since my initial diagnosis back in December 2015. I wrote and published my memoir, significantly raised awareness for the human papillomavirus (HPV) and its link to six cancers through numerous articles, radio, and television interviews, authored more than 80 blog posts, vehemently opposed the Right to Try Act, and even published a collection of my photography work.
I believe that my current “walk with purpose” as a patient advocate is far from finished. But with spring and summer around the corner – I want to get outside, travel, and enjoy life without being hampered by the deleterious effects of chemotherapy.
The title of this post reflects the 1929 slogan used in advertising for Coca-Cola. It takes on special meaning for me, as I hope that this pause in therapy helps me heal both physically and mentally. And that would indeed be very refreshing.
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.
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.
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
It’s been a few weeks since my last blog post, so I wanted to provide a brief update. The good news is that life has been rather uneventful – no trips to the emergency room, no new side effects, etc. Let’s face it, we were due for a break!
Last week was not only the Labor Day Holiday but also a scheduled break from chemotherapy to allow my blood counts, etc. to recover. As a result, as of Monday morning I was feeling better than any time in recent memory. My appetite has been good and my energy level afforded us an opportunity to take our puppy Humphrey with us to walk around a local art fair this past weekend.
This week, however, I’m back to week #1 of my treatment schedule starting with a doublet of chemotherapies (paclitaxel and carboplatin). For me, the carboplatin results in greater side effects, particularly stomach upset, decreased appetite, and fatigue. My typical four week treatment “cycle” looks like this:
Week #1: paclitaxel + carboplatin
Week #2: paclitaxel only
Week #3: paclitaxel only
Week #4: holiday/break (no treatment) Lather, rinse & repeat
Before this week’s chemo appointment, I had time and energy to visit with another one of my social media connections for the first time (@BursatilBiotech). She traveled from Argentina to New York with a relative for vacation and we had arranged a brief meeting in the morning while she was in town.
My next chemo break falls during the first week of October. At that time, I’ll have my periodic imaging procedure to see if the cancer is continuing to respond favorably to the treatment. Based on improved air flow to my lungs, I’m hopeful for some continued good news.
In the meantime, I’ve been keeping busy with my mission to raise awareness for the human papillomavirus (HPV), its direct link to six cancers, and the available vaccines that can prevent HPV. For example, my guest editorial on the topic appears in this week’s issue of BioCentury and is freely available to view on their website by clicking here. In addition, last Thursday I did a television interview with CURE Today and you can view the first segment on their website by clicking here. I’m so very grateful to these and other media outlets that have provided me with a platform to advance my mission!
Most importantly, today is another gift that I will truly treasure…as I get to celebrate my youngest daughter’s birthday. Happy 17th birthday Megan!!
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.
Life has been hectic since this past Sunday when Lorie and I drove to New York City for another visit to Memorial Sloan-Kettering Cancer Center’s (MSKCCs) urgent care facility. Drainage from my chest tube once again changed from amber fluid to the color of a fine Cabernet wine, which signaled that bleeding resumed. More alarming was the accompanying shortness of breath and increased coughing. I was out of breath even from walking a short distance to go to the bathroom.
We arrived at MSKCC around 10am and, following a brief review of recent events, had a chest x-ray taken to get a quick read on the situation. The resulting images showed a complete “white-out” in the left lung, which indicated that fluid had essentially filled the entire space. Normally, the lungs look transparent or black on an x-ray due to air in the lungs.
The fact that I had only one viable lung explained the shortness of breath and coughing. What the x-ray couldn’t reveal was the composition of the fluid (serous fluid, blood, tumor) or its source. For more information, a CT scan was required and scheduled. Unfortunately, weekends at any hospital can be hectic and my CT scan didn’t take place until close to midnight and I was admitted.
Monday morning, we had the pleasure of meeting again with surgeon Dr. Bernard Park, deputy chief of clinical affairs, thoracic service at MSKCC. In December 2016, Dr. Park had successfully performed a bronchoscopy procedure to biopsy a suspicious lymph node near my airway. We knew that we were in good hands.
Dr. Park explained the situation and the requisite next-steps were abundantly clear. For whatever reason, the Aspira Pleural Drainage Catheter in my left lung wasn’t fully draining the fluid – especially towards the top section of my lung. That fluid needed to be drained in order to alleviate shortness of breath and coughing. How to best accomplish this was a source of significant discussion.
One short-term solution was to temporarily insert a plastic tube straight through the front of my chest into the top section of the lung to manually extract the fluid. This would require a brief stay in the hospital while the tube was present and it would be removed prior to going home. A longer-term solution was to place a second PleurX catheter that could be accessed whenever needed at home to extract fluid from the top section of the lung.
In either case, a potential pitfall was that the fluid in the upper section of the lung may actually be fibrotic scar tissue (called loculation) or tumor, preventing effective drainage. Dr. George Getrajdman, an interventional radiologist at MSKCC, proposed a step-wise procedure. First, he would try to extract the fluid near the top of the left lung using a syringe to see “if” anything could be extracted. If so, he could confidently proceed with placement of a second catheter (Option A) or the fluid could simply be drained with the syringe to see if that provided symptomatic relief before proceeding with more permanent catheter placement (Option B). Placing a temporary plastic tube was also a consideration (Option C), with the downside being that fluid accumulates again in the future – requiring another procedure. If no fluid could be extracted with a syringe, then the space was being occupied by something more solid (fibrotic scar tissue and/or tumor mass) and a catheter would be pointless. Ultimately, I decided to proceed with Option A.
Requiring more urgent resolution, however, was the recently discovered blood clot in my iliac vein near the pelvis and its potential to detach and cause a pulmonary embolism (PE) – a condition in which one or more arteries in the lungs become blocked by a blood clot, which could stop blood flow to the lung. With essentially only one lung functioning, a PE in my remaining viable lung would likely be fatal. Hence the sense of urgency.
Due to the recurrence of blood in the drainage from my original chest tube, we reached the point where taking anticoagulant medication (Lovenox®/ enoxaparin sodium) to treat and prevent deep vein thrombosis (DVT) was no longer viable and was discontinued. The only alternative was placement of an inferior vena cava (IVC) filter device designed to trap/prevent my blot clot from traveling from the largest vein in the body, the inferior vena cava, to the lungs or heart.
To insert an IVC filter, I was given medication to help relax and a local anesthetic to numb the area of insertion. Implanting the IVC filter was Dr. Getrajdman, who inserted a catheter through a small incision in my neck. Using X-rays images to guide the procedure, he advanced the IVC filter through the catheter and into the inferior vena cava. Once the IVC filter was in place, he removed the catheter and put a small bandage on the insertion site.
Fortunately, Dr. Getrajdman was also able to deal with the left lung issue during the same procedure. Approximately 1.5 liters of fluid were successfully acquired from the top portion of the lung, so he proceeded with placement of a second catheter as planned/hoped. Both procedures took about 1.5 hours in total to complete. Afterwards, an x-ray confirmed that the top portion of the lung was free of fluid as shown in the accompanying image.
My breathing improved immediately following the procedure and I felt fine with all of the pain medication. However, waking up the next day (Tuesday) I felt like I’d been hit by a truck. There was a fair amount of pain at both the incision on my neck from the IVC filter insertion and the newly placed catheter site. As the day progressed, the pain diminished and I started feeling much better.
By late afternoon, tissue plasminogen activator (TPA) was injected through my original Aspira chest tube to help clear the line by breaking down blood clots. Afterwards, we were trained on using the “new” PleurX catheter and then proceeded with draining fluid from both the top and bottom catheters. The top PleurX catheter rapidly drained 500cc of fluid, which looked far less bloody than what had previously been extracted from the bottom. We were only able to drain 200cc of fluid from the bottom Aspira catheter, which was still bloody and thicker. It’s speculated that the fluid from the bottom was left over from before and there was no active bleeding, which will be confirmed by monitoring hemoglobin levels.
With the IVC filter in place and the ability to drain both top/bottom fluid from my left lung, I was able to proceed with my second dose of chemotherapy while in the hospital. This consisted solely of paclitaxel and then next week should be my initial loading dose with cetuximab.
We’re planning to try draining both chest tube sites today (Wednesday) and looking for further improvement in subsequent chest x-rays. Assuming all goes well, I should be released from the hospital but need to stay in NYC overnight and see my oncologist tomorrow. I’m feeling much better now, but the coming days should be when the effects of my first week of chemotherapy (paclitaxel/carboplatin) start materializing. In any event, I’ll be happy to get home hopefully tomorrow and see how big our new puppy Humphrey has grown in the short time we’ve been away.
Despite the hectic backdrop of late, I’ve been busy researching treatment options for patients like me with incurable squamous cell carcinoma of the head and neck (SCCHN). My first inclination was to pursue another immunotherapy, as there are a lot of clinical trials with novel immunotherapies and combinations currently recruiting. With my disease progressing, however, I felt that perhaps a more aggressive approach backed by data was warranted.
For example, one viable option is the chemotherapy-based “EXTREME” regimen with 5-fluorouracil (5-FU), cisplatin or carboplatin, and the monoclonal antibody Erbitux® (cetuximab). Initially, I discounted this option because 5-FU-based regimens can be associated with significant toxicities. Nonetheless, a multicenter phase III trial in SCCHN demonstrated a 36% longer median overall survival using the EXTREME regimen versus chemotherapy alone (10.1 months vs. 7.4 months, respectively). It was the kind of data-based treatment I was seeking, but I was really against receiving 5-FU.
One of the many nasty side effects from 5-FU is palmar-plantar erythrodysesthesia (PPE), also known as hand-foot syndrome (HFS). There are currently no treatments or preventions for HFS, which is characterized by tingling in the palms, fingers and soles of feet and by erythema, which may progress to burning pain with dryness, cracking, desquamation, ulceration and oedema.
I learned a lot about HFS while serving as CEO of VioQuest Pharmaceuticals. The company was developing a 1% uracil topical formulation to prevent HFS. Uracil is a naturally occurring substrate that directly competes with 5-FU for the enzymes that metabolize 5-FU to its toxic metabolites. When applied topically, the concentration of uracil in the skin greatly exceeds the concentrations of 5-FU, thus blocking the formation of 5-FU’s toxic metabolites. Unfortunately, there haven’t been any updates on the product’s development status since April 2010 according to ClinicalTrials.gov.
When we arrived at Memorial Sloan-Kettering Cancer Center (MSKCC) late Sunday evening, I had already decided that if it came down to the EXTREME regimen as my best option – I would simply forgo further treatment, contact hospice, and let things progress naturally.
Fortunately, my medical oncologist at MSKCC, Dr. David Pfister, suggested replacing 5-FU with weekly paclitaxel, resulting in a chemotherapy regimen known as PCC (paclitaxel, carboplatin, and cetuximab), that has been found to be efficacious and well-tolerated in patients with SCCHN when used as induction chemotherapy. As a result, 5-FU and paclitaxel can be viewed as somewhat interchangeable, but paclitaxel offers a more favorable toxicity profile.
Unlike the two chemotherapeutics, cetuximab is a chimeric human-murine monoclonal antibody (mAb). MAb therapy, the most widely used form of cancer immunotherapy today, is a form of “passive” immunotherapy that often does not require the patient’s immune system to take an active role in fighting the cancer.
Cetuximab targets and binds to epidermal growth factor receptors (EGFR) that are found on the surface of many normal cells and cancer cells. Doing so stops the cell from continuing the signaling pathway that promotes cell division and growth, effectively stopping the cancer by stopping the cancerous cells from growing and multiplying.
I’m a big believer in the power of immunotherapy and believe that my recent treatment with the experimental M7824 (first-in-class, bispecific fusion protein of an avelumab-like antibody linked to two molecules of TGF-beta trap) had a positive effect on my disease. More importantly, there may even be synergy between what M7824 has done so far in combination with the PCC regimen. Even if the PCC regimen only shrinks my lung tumors, the reduction in disease burden could help future immunotherapy treatments be more efficacious.
Having plenty of time to weigh the future treatment options while the bleeding issue with my chest tube was being addressed, I decided that Dr. Pfister’s proposed PCC regimen made a lot of sense. Much to my surprise, I was able to start treatment with the two chemotherapeutics (paclitaxel and carboplatin) on Tuesday and return home that evening. Next Tuesday I will receive my first loading dose of cetuximab.
Regarding the bloody drainage from my chest tube referenced in my prior post, I had a liter of fluid drained using a vacuum-like device connected to my catheter and the drainage returned to a healthier apple juice color. I was started on Lovenox again while continually monitoring the fluid output through the tube looking for the color to change back to bloody. Fortunately, the color remained the same and it looks like Lovenox wasn’t the likely culprit. I’m back on Lovenox and so far, so good.
I never thought I’d say the phrase “I’m back on chemotherapy.” But here I am, continuing the fight. Why? Because Lorie slept at a hotel on our second night in NYC to get some much-needed rest and my mind went drifting down memory lane as I sat alone in the patient room at MSKCC. I thought about all the good times we shared, the family we raised, and how much we love each other. I cried and cried. Suddenly, I knew that if chemotherapy could give me even just one more day with her, it would be worth the drug’s side effects.
And yes, there is still the hope of doing better and living longer than expected. The chances are remote, but not zero. More updates soon…