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.
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
It was July 18, 2017 when I started my third line of treatment (carboplatin/paclitaxel) for Stage IV squamous cell carcinoma of the head and neck. Things weren’t exactly going great at the time and I remember thinking that I wouldn’t make it until my 49th birthday in November.
For example, I had two chest tubes to manage a pleural effusion (buildup of fluid in the pleural lining of the lung). My tumors were slowly growing with each CT scan. Additionally, I had an IVC filter put in to manage clots since blood thinners had caused bleeding issues. I was a mess and in-and-out of the hospital constantly.
Earlier today, however, I received my third consecutive CT scan report since starting chemo again that showed further decreases in my lung, spleen, and pleural metastases (where the cancer had spread). It looks as though the cancer continues to respond to the treatment, which is great news.
It just goes to show the perils of trying to answer the question every cancer patient wants to know: How much more time do I have left? It doesn’t stop us from asking physicians, but as a dear friend consistently points out to me – you just have to live in the moment and enjoy every day. Much easier said than done, but sage advice nonetheless.
I can’t help but wonder if our 8-month old golden retriever puppy, Humphrey, is perhaps some kind of good luck charm? We got him about a month before I started treatment and things have been going relatively well since then. Not that we need another reason to love him! He’s such a clown, always making us laugh and smile. We love all of our other pets too, but there’s just something about Humphrey that makes him special. At the very least, he’s a great therapy dog for me.
In any event, today is a very good day. It will be nice to bask in the warmth of some good news as the colder weather of the season approaches.
You’ll know from the opening pages of my memoir A Walk with Purpose that it was the day before Thanksgiving in 2015 when I first discovered a large lump on the right side of my neck. The discovery catapulted me on a journey that I never could have imagined, full of twists and turns and changing the very fiber of my being—physically, emotionally and spiritually.
A lot has changed in the past two years—some good, some bad, some perhaps downright ugly. But Thanksgiving has always been one of my favorite holidays—a time of reflection and giving thanks for the goodness of the season past instead of complaining about what we don’t have.
Throughout the process of writing my memoir, I was constantly amazed to see how all the gifts and experiences of this world came together like tiny puzzle pieces to reveal the bigger purpose of my life. In particular, how an unlikely career path to the biotechnology industry would help forge key relationships, open new doors, and help me navigate a cancer diagnosis and treatment through the knowledge gained over decades of service and leadership. Most importantly, how I could use all of the aforementioned to help others facing head and neck cancer caused by the human papillomavirus (HPV).
In some ways, my revelation was reminiscent of the first time I saw the movie Signs written and directed by M. Night Shyamalan. In the movie, a father and former priest lives with his asthmatic son, his daughter who constantly leaves glasses of water sitting out around the house, and his younger brother, a failed minor league baseball player, on an isolated farm in Bucks County, Pennsylvania (coincidentally where we have lived for more than 15-years…). The father lost his faith and gave up his priesthood after his wife died in a local traffic accident. Towards the end of the movie, a crucial scene reveals the unlikely connection between asthma, glasses of water, and the mother’s final words to her husband instructing his brother to “swing away.” At the end of the movie, the father is shown returning to his priestly duties, apparently having regained his faith.
During 2017, I was fortunate to write and publish (then rewrite and republish…) my memoir. Since my diagnosis, I’ve also published a total of 70 posts (gulp!) on my patient blog. Supporting these efforts, I’ve worked with a publicist and conducted numerous interviews and penned guest editorials for various media outlets. All of these actions designed to: 1) help increase awareness of HPV and its link to six cancers in men and women; 2) underscore the need for additional prevention efforts for HPV-associated cancers, including efforts to increase vaccination coverage; 3) correct the misperception that HPV is mainly a disease affecting women; and, 4) highlight how HPV can be spread in the fluids of the mucosal membranes, which line the mouth, throat and genital tracts. Looking back at my efforts, I hope you’ll agree it has been a productive year.
I’m currently going through my third treatment regimen (chemotherapy) with the simple hope of buying more time. My body is weary from repeated assault with toxic chemicals aimed to keep the cancer at bay—hoping to see the day when a better treatment option becomes available. Fortunately, my current quality of life allows me to continue my walk with purpose. In fact, today I am doing a couple of media interviews and meeting with a head and neck cancer patient support group in Princeton, New Jersey.
My next CT scan has been scheduled for the last week of November. The results of which will inform whether or not my cancer continues to shrink, stays stable, or is progressing. Regardless of the outcome, I strive to simply live in the moment and take advantage of the Thanksgiving period to consider how we can spread more happiness around, to look back at all the great memories and good people who came into our lives.
May the good things of life be yours in abundance not only during November but throughout the coming year. Thank you to everyone with an interest in my story for your continued support and for keeping in touch!
Back in early August 2017, I had my two chest catheters removed during one of my many hospital visits during the summer. While insertion of both devices was done under twilight anesthesia, the medical professionals who arrived at my room explained that lidocaine injections would hurt more than the actual extraction – so no local anesthesia would be used.
I had two different catheters in my body. The first one was an Aspira® catheter, which was in my body approximately four months. The second was a PleurX® catheter that was used for a much shorter period.
Since the removal of both catheters, I’ve had issues with the area between where the Aspira catheter was inserted and the exit site (see Figure 1). The area was often sore and red, which got gradually worse during the past two months. This week, the exit site became raised and fluid started oozing from the previously healed exit incision.
To help keep the catheter tube in place, a retention cuff is used to facilitate tissue in-growth (see Figure 2). Accordingly, the catheter must be surgically removed by first freeing the cuff from the tissue, then by pulling the catheter out gently and smoothly.
Yesterday, an ultrasound imaging procedure revealed that the Aspira cuff was left behind and was the source of my discomfort. There was no surgical procedure used in the removal of my Aspira catheter back in August and therefore the cuff, which became quite attached to my body, didn’t want to leave.
Fortunately, I was able to see a surgical team late yesterday as well. After assessing the situation, they were able squeeze me in for a procedure. First, they numbed the area with lidocaine injections and then retrieved the rogue Aspira cuff. It was a quick procedure.
I’ll have plenty of time to rest, as my blood counts were once again too low for chemotherapy this week. Next week is my normal week off from chemo as well, so my next round of therapy should be on November 7th.
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.
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.
My recent hospitalization was the longest and most volatile, resembling that of a roller coaster ride at an amusement park. What started with a fever prompting our arrival at Memorial Sloan-Kettering Cancer Center’s (MSKCC’s) urgent care facility in New York last Thursday evening ended up escalating to a brief visit to the intensive care unit (ICU) as detailed in my prior post.
The isolated cardiac event appears managed by medication (metoprolol) and hasn’t reappeared. However, despite numerous blood cultures, chest x-rays, CT scans, and other diagnostics, the cause of my fever – the original reason for my hospital visit – remains a mystery.
After an infectious disease consult, bacterial infection was ruled out as the likely source of the fever and I was taken off the broad-spectrum antibiotics that were being delivered via intravenous infusion. Some of the cultures take time to process, so there is always a chance that something will materialize in the coming days.
One silver lining amidst the tight turns, steep slopes, and inversions on my roller coaster ride was the fact that my left lung appeared much improved in terms of fluid accumulation. This coincided with almost zero drainage from my two chest tubes over the past week or so and it was determined that removing both of them was in my best interest since they weren’t serving any functional purpose and there is always a risk of infection in having two foreign objects in the body.
Insertion of the two chest tubes (one while at the National Institutes of Health and the other at MSKCC) was done under twilight anesthesia, where I was awake but sedated. This is accomplished via administration of a concoction of agents including a benzodiazepine (midazolam) and the narcotic fentanyl. For both procedures, I had little if any discomfort.
Naturally, I expected that removal of the chest tubes would also be done under twilight anesthesia. Much to my chagrin, I was informed that the extraction procedure is normally done bedside and without anesthesia. Two medical professionals arrived at my room at MSKCC and provided a reasonable explanation for the lack of lidocaine or other local anesthesia (the injections would hurt more than the extraction, several would be needed to cover the entire area, and risk that the tubes could be punctured via the needles).
Ever since their initial placement, I’ve been anxious when cleaning or touching the plastic tubes that protruded from the front of my left chest. There was just something unnerving about seeing the foreign tubes that looked like they would be better suited on a Borg, a fictional alien group that appeared in the Star Trek franchise.
As such, you can imagine my surprise as one of the medical professionals from interventional radiology wrapped the first tube around her hand and proceeded to yank it with the same intensity as trying to start a lawn mower by pulling the cord. To be fair, the pain wasn’t terrible and this was one of those situations where speed was definitely better than dragging it out. Nonetheless, I was shocked by the experience and now had an idea what extraction of the second tube would be like.
The first tube was easy by comparison, as it was only placed a short while ago. The second extraction was more difficult as that tube was in place for 4-months and had grown quite attached to me. The first attempt yielded little, if any, movement from the tube. Fortunately, the second try was successful and I am now “tube free.” The tips of both tubes were cut and sent to be cultured in case either was the source of infection that was causing my fevers.
There are plenty of other possibilities to explain my fevers, including the tumors, blood clots, and others. For now, the plan is to carefully monitor my temperature and hope that it continues to respond to Tylenol®. If not, we’ll be back at the hospital.
In view of the current situation, my medical oncologist (Dr. Pfister) appropriately held back on this week’s cycle of chemotherapy to be safe. Encouragingly, the CT scan used to look for pneumonia and other potential reasons for the fever provided a sneak peek of how the tumors responded to the first three weeks of chemotherapy and almost all of them showed decreases in size. This is definitely better than having the tumors grow or stay the same size, but likely doesn’t change the “terminal” nature of my disease. It does, however, hopefully buy me some more time.
It’s great to be back home and I cannot wait to see my daughters and the petting zoo…especially Humphrey! And words cannot begin to express our family’s gratitude for all of the many people that helped out while we were at MSKCC the past 5-days.
On Tuesday, August 1, 2017, I received my third dose of chemotherapy. Everything went well and the next day I was feeling excellent, although some of that can be contributed to the steroid pre-medication. As an added plus, I was looking forward to having family in town for the weekend. Life seemed pretty good.
In the back of my mind, I knew that I likely hadn’t reached the nadir, or lowest point, in my blood counts from the prior chemotherapy. As such, there was a possibility that I might not be feeling 100% for my visitors.
Sure enough, by Wednesday evening I started running a mild temperature. No big deal – it was below the 38 degrees Celsius (°C) cutoff for an “official” temperature. On Thursday I wasn’t feeling energetic and napped most of the day. Then the real fun started.
My temperature rose Thursday evening and the physician-on-call at Memorial Sloan-Kettering Cancer Center (MSKCC) recommended that I come to urgent care to get things checked out. So, Lorie and I made the drive from Bucks County, PA to New York City for the third visit to urgent care within the past three weeks! We debated taking the train as opposed to driving, which would have been faster.
By the time we arrived at MSKCC, my temperature was above 39 °C and I felt the familiar muscle aches and general fatigue that I associated with influenza. Coincidentally, it was the diagnosis of influenza during my first week of chemoradiation in early 2016 that resulted in my first trip to MSKCC’s urgent care facility.
Flu season doesn’t usually begin until October, so this time concern focused on bacterial infection. With my white blood cell counts negatively impacted by chemotherapy, it was possible that my body couldn’t fight off an infection in one of my chest tubes or another location.
I was triaged with the usual battery of blood tests and a chest x-ray before being placed in an exam room. Urgent care was very crowded and I was just happy to have a bed and looked forward to resting horizontally for a while.
I sat on the bed, preparing to relax when I clutched my chest from a sudden, stabbing pain. Lorie could tell from the expression on my face this was no ordinary situation and called for the nurse who arrived immediately to assess the situation. As various cables were connected, I felt my heart racing and Lorie was shocked to see my pulse was 225 on the computer monitor.
Normally, the heart beats about 60 to 100 times per a minute at rest. But in tachycardia, the heart beats faster than normal in the upper or lower chambers of the heart or both while at rest. The episode ended within a minute or so, but tachycardia can disrupt normal heart function and lead to serious complications, including heart failure, stroke, and sudden cardiac arrest or death. Patches were promptly applied outside of my chest wall, which could be used if needed to provide a brief electric shock to the heart to reset the heart rhythm back to its normal, regular pattern.
My heart wasn’t the only one racing as the medical team placed a crash cart outside my door and a sense of urgency filled the room. The contents of a crash cart vary, but typically contain the tools and drugs needed to treat a person in or near cardiac arrest. I was sure that the end was near.
Fortunately, no further cardiac events occurred and I was admitted to MSKCC’s intensive care unit (ICU), where seriously ill patients are cared for by specially trained staff. While I have never had the misfortune to be admitted to an ICU in the past, I was amazed by the both the medical staff and technology used to monitor my condition and knew I was in good hands.
I was placed on an antibiotic and medication to stabilize my heart rate while the team worked to determine the source of the tachycardia and whether or not my episode had caused any damage to my heart. Preliminary assessments ranged from one of my tumors or chest tubes rubbing up against the sensitive tissue surrounding the heart to low electrolyte levels, which are important minerals in your body that have an electric charge. Maintaining the right balance of electrolytes is key for your body’s blood chemistry, muscle action and other processes.
On Friday, my temperature returned to normal and there were no further cardiac events. Still, I couldn’t help but feel that perhaps it was time to contact hospice and let the cancer take its course. I had faced my share of obstacles since being diagnosed with cancer in late 2015 and three recent trips to the hospital resulted in further erosion of my quality of life with two chest tubes, being back on chemotherapy and its side effects, and now the prospect of potential cardiac issues. Lorie and I discussed the topic of hospice and she rightfully pointed out that such a decision shouldn’t be made while sitting in the ICU.
I shared my thoughts about hospice with one of nurses while he assisted me with walking a few laps around the floor. Much to my surprise, he shared with me that it was about 11-years ago that he underwent a bone marrow transplant at MSKCC and how it caused him to pursue a career in medicine. He discounted my outlook on hospice, stating that I was young, up-and-walking, and seemed otherwise quite capable of enjoying further quality time with my wife and daughters. When my quality of life truly diminishes, that would be the time to consider hospice.
Our daughters, Rosie and Megan, traveled by train to NYC and were able to visit me briefly in the ICU. However, they all stayed overnight in a nearby hotel thanks to my father and step-mother. Being in the ICU wasn’t conducive for the planned family visit, which unfortunately got cancelled.
I was released from the ICU to a regular room very late Friday evening. I’ll be here for at least another day or two because the source of the fever still hasn’t been identified. With the fever gone, it appears the antibiotics were successful in treating the infection, but without knowing the source or strain – treatment can be challenging.
Viewing my Twitter feed briefly from the ICU on Friday, I was delighted to learn that Adam Feuerstein, Senior Writer at STAT News (statnews.com), Tweeted that he was dedicating his Pan-Mass Challenge ride to me.
Each year the Pan-Mass Challenge brings together thousands of impassioned cyclists, committed volunteers, generous donors and dedicated corporate sponsors. Together, they strive to provide Dana-Farber’s doctors and researchers the necessary resources to discover cures for all types of cancer.
“Michael, we love you, support you. Your strength will inspire me tomorrow.,” Tweeted Adam. Well, Adam, your Tweet and the many acknowledgements on Twitter helped brighten my day and I’m still here giving cancer everything that I’ve got. Godspeed on your ride and thank you for an amazing gesture!
And special thanks to all of Lorie’s friends who have helped our daughters get to NYC and/or babysit our small petting zoo while we’re away. It’s a lot to ask, and we’re so grateful for the help since it is one less thing to worry about. Humphrey appears to have made new puppy friends, as evidenced by the photos and videos that I love seeing.
It’s Saturday afternoon as I finish writing this blog update. Lorie, Rosie, and Megan are able to visit longer since I’m in a regular room now. Seeing people in the hospital isn’t tops on most teen’s lists of favorite activities, but it means so much to me having them here.
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…
As discussed in my prior blog post, the recent CT scan at the National Institutes of Health (NIH) didn’t turn out as we had hoped. Not only did the cancer show signs of progressing, but a blot clot was also found in my left iliac artery near my pelvis.
I had been on Lovenox (enoxaparin) for just under one week, when I noticed that the daily drainage from my chest tube looked much more like blood than the usual straw color. Equally disconcerting, the volume of drainage was greater than usual.
At the suggestion of my treating physicians, we stopped at the emergency room at a local hospital in Bucks County (which will remain nameless) on Sunday morning around 10am simply to have a complete set of blood work done. The concern being that the loss of so much blood via the chest tube could necessitate a transfusion.
Fortunately, my hemoglobin levels were okay (low hemoglobin count may indicate you have anemia) and a transfusion wasn’t needed. However, a big problem remained – finding the cause of bleeding coming from my pleural effusion and how to stop it.
One thing was almost certain – the anticoagulant Lovenox likely played a role. Discontinuing Lovenox could help reverse the bleeding, but I would be left with an untreated blood clot that could cause major problems if it moved from its current location. Damned if i do, damned if i don’t.
Quite the conundrum and not one to take lightly. As such, after waiting around the local hospital until early evening with no solutions, nurses, or physicians in sight, Lorie took control and requested that I be immediately discharged. Shortly thereafter she drove us to New York City to visit Memorial Sloan-Kettering Cancer Center (MSKCC). I already had an appointment scheduled with my medical oncologist (Dr. David Pfister) for Tuesday to discuss possible next-steps for treatment, such as chemotherapy, and the drive to NYC is shorter than going to the NIH in Bethesda, MD.
We arrived after midnight, but the urgent care team at MSKCC promptly assessed my condition. More blood work was drawn along with a chest x-ray and CT scan. Simply looking at the chest x-ray, I could tell that the pleural effusion was quite large. This shouldn’t be the case, as I drain it daily.
For now, stopping the internal bleeding is more important than addressing the blood clot – although both issues require immediate attention. I’ve already discontinued the Lovenox and the MSKCC team will assess various options to access and drain the large amount of fluid still trapped in my left lung. The impact of the fluid is not insignificant, as I am short of breath walking short distances or up/down stairs. Coughing also has gotten worse and leads to feeling light-headed or dizzy.
Assuming the pleural effusion can be controlled, the next step would be to deal with the blood clot. One solution is to place a filtering device in the Inferior Vena Cava (IVC, a large vein in the abdomen that returns blood from the lower body to the heart) that could help prevent a pulmonary embolism, which is fatal in one-third of patients who suffer from it. The filter essentially traps blood clots and prevents them from reaching the lungs or heart.
Of course, aside from the aforementioned, I am interested in exploring potential new treatment options and look forward to upcoming physician appointments. Until then, I’ve been admitted to MSKCC for at least a day or two and will provide any meaningful updates via Twitter, etc.
After a full day of activities yesterday, Lorie and I decided to grab an early dinner in Bethesda, MD at a restaurant recommended to us. We really haven’t explored much of the local establishments, so it was nice to venture out and try something new.
We sat down and I immediately focused on the cheese appetizer selection and ordered three different types. Half way through the appetizer, however, my cell phone rang. It was Dr. Strauss from the NIH.
I could tell from the initial line of questioning (are you still at NIH, where are you now, are you alone, etc.) that bad news would shortly follow. Sure enough, yesterday’s CT scan revealed a deep vein thrombosis (DVT) on the left side of my pelvis and Dr. Strauss requested that we promptly return to NIH to start treatment with Lovenox (enoxaparin). With that, we paid our restaurant bill and left our dinners behind to take an Uber back to NIH.
VIDEO CAPTION: 3D CT image from NIH showing tumor locations highlighted in green. The largest mass (lower right) is from my spleen.
Both Dr. Gulley and Dr. Strauss met us back at NIH in the day hospital and we went to an empty treatment room to talk in private. Unfortunately, the blood clot was merely a sideshow for the bigger news, which was that several tumors increased in size from the prior scan taken 6-weeks ago. For the first time, my outlook was black & white: the cancer was winning the tug-of-war with my body’s immune system. Receiving further treatment with the experimental agent M7824 would be hard to justify and more aggressive treatment, such as chemotherapy, appeared to be the favored next step.
After a brief tutorial on self-injecting Lovenox twice daily, we returned to the hotel and planned on meeting early the next morning to review the CT scans and have further discussion. The mood was somber and neither one of us slept very well.
The NIH is only one of two places to have advanced imaging technology that was truly fascinating and dramatically improves the ability to visualize and follow specific tumors over time. Personally, I was amazed by the progress radiology has made since I last reviewed such images. We were engrossed in discussion about the various images displayed on the three monitor screens when Lorie’s phone rang. It was our oldest daughter Rosie.
The first few calls were easy to dismiss since we were in an important meeting, but then came a text – “emergency.” Driving home from class, Rosie apparently veered into the lane of oncoming traffic and hit another car going 30-40 MPH. All of the airbags deployed and the car is totaled. She was taken to the local hospital for x-rays, but nothing was broken and she was released. We understand the driver of the other car is okay as well.
Immediately, my mind wandered from my own mortality being visualized on the computer screens to how Rosie’s accident could have been far, far worse – perhaps even fatal. I’m not sure exactly how I would have reacted to that news on top of my disease update, but I do know it would pale by comparison to my own situation.
On more than one occasion, Lorie and I have uttered the words “it could always be worse.” Lately, it has been harder and harder to make that statement. However, with Rosie largely unharmed in what could have been disastrous, today definitely could have been worse.
I will blog more about my condition and treatment options in future posts after digesting all of the information from the past 48-hours. In the meantime, with no infusion of M7824 today, we are on the train home to be with Rosie.
Earlier this week, Lorie and I made our biweekly visit to the National Institutes of Health (NIH) for my infusion of the experimental agent M7824. The two day trip was uneventful and included a variety of imaging and other diagnostic tests, including an ultrasound of my spleen and a chest x-ray to monitor the pleural effusion in my left lung.
Fortunately, all of the tests came back fine and I was cleared to receive my regular infusion of M7824. As with all the previous treatments, there were no adverse reactions and we returned home later that evening.
However, with the month of July rapidly approaching, I can’t help but start to feel quite anxious. This is due to the published results from Bristol-Myers Squibb’s “CheckMate 141” phase 3 trial with Opdivo® (nivolumab), an anti-programmed death 1 (PD-1) monoclonal antibody also known as a checkpoint inhibitor. In that study, 361 patients with recurrent squamous-cell carcinoma of the head and neck (SCCHN) whose disease had progressed within 6 months after platinum-based chemotherapy were assigned, in a 2:1 ratio, to receive Opdivo every 2 weeks or standard, single-agent systemic therapy (methotrexate, docetaxel, or cetuximab). The primary end point was overall survival.
Treatment with Opdivo resulted in longer overall survival than treatment with standard, single-agent therapy. The median overall survival was 7.5 months (95% confidence interval [CI], range 5.5 months to 9.1 months) in the Opdivo group versus 5.1 months (95% CI, 4.0 months to 6.0 months) in the group that received standard therapy.
Recall from prior posts that M7824 is a completely novel, first-in-class, bispecific fusion protein of an avelumab-like, anti-PD-L1 antibody linked to two molecules of TGF-beta trap. Therefore, I always viewed M7824 as a “potentially” superior alternative to Opdivo given its added mechanism of action, hence my strong interest in participating in the M7824 clinical trial.
Assuming for a moment that M7824’s treatment effect is at least comparable to Opdivo, and considering that my disease recurred around December 2016, an expected survival of 7.5 months would translate to the July/August 2017 timeframe.
To be fair, an apples-to-apples comparison of Opdivo and M7824 isn’t possible. However, the results of Bristol-Myers Squibb’s “CheckMate 141” trial serve as a contemporary data set for checkpoint inhibitors in the treatment of recurrent SCCHN and are definitely something that I keep my eye on.
Barring any surprises, I’ll continue biweekly treatment with M7824 and then repeat imaging in July to see whether or not my disease has progressed. In the meantime, I’ll continue to savor simple moments like enjoying ice cream on a warm summer evening with my wife (see photo).
It’s been a couple of weeks since my last clinical post, so I wanted to provide an update following this week’s NIH appointments.
First, surgical insertion of my Aspira® drainage system has dramatically improved the pleural effusion in my left lung. It’s essentially a chest tube/catheter that allows me to drain the fluid buildup on an as-needed basis into drainage bags at home. The image to the right shows before and after chest x-ray images that demonstrate just how blocked my left lung was before being drained (nearly 2/3 blocked). It also shows how my left lung is now “close” to normal following drainage.
Second, I’ve been on prednisone (steroid) to help “sculpt” the inflammatory response, which is also helping keep the fluid from building up so quickly in my left lung. Whereas I was emptying 100 mL or more on a daily basis previously, I am now only draining 15-20 mL every other day or so.
Now that the pleural effusion can be managed, attention returned to whether or not to resume treatment with M7824, a completely novel, first-in-class, bispecific fusion protein (see prior posts for more details). My last infusion of M7824 was several weeks ago.
Following another CT scan and constructive discussion with the NIH team, we came to the conclusion that there is essentially a tug-of-war occurring between the cancer in my lungs and my body’s immune system, the latter of which appears to be benefiting from M7824. The hope is that eventually M7824 will tip the scale in favor of my body’s immune system and control the cancer.
Accordingly, the decision was made to keep moving forward with M7824 and I received an infusion on Tuesday, May 16, 2017. As with past administrations, there were no issues and I returned home to Pennsylvania with Lorie later that evening.
The pleural effusion will be monitored closely and managed via the catheter and steroids. As long as there are no major issues in terms of fluid in my lung, I will continue to receive an infusion of M7824 every other week. A repeat CT scan will be done in a month or so to reassess the situation.
This past Wednesday, I had a thoracentesis procedure in which a needle was inserted into the pleural space between my lungs and chest wall. This procedure was done to remove excess fluid, known as a pleural effusion, from the pleural space to help me breathe easier.
During the procedure, Dr. Elliot Levy, an interventional radiologists at NIH trained in radiology and minimally invasive procedures, drained 1.5 liters from the pleural space. Almost immediately, I felt better and even while I was being wheeled back to my recovery room, I asked my wife Lorie to grab me a turkey sandwich from the cafeteria as I was quite hungry. It’s possible the large amount of fluid on my left side was putting some pressure on my stomach, which could help explain why I haven’t had much of an appetite lately.
By Thursday, however, the fluid was returning, prompting yet another thoracentesis procedure on Friday to remove 1.5 liters of fluid. The rapid nature of the fluid buildup means that I will most likely have an Aspira® drainage system surgically installed to conveniently let me drain the fluid buildup at home via a small catheter and drainage bags. That procedure is planned for Monday, so I have been staying at NIH since Wednesday and will be here over the weekend.
More importantly, however, a CT scan was also done on Friday morning with disappointing results. The cancer nodules grew since the last CT scan on March 7, 2017. This reflects true disease progression as opposed to “pseudo-progression” as discussed in a prior post. I have been taken off the clinical study with M7824.
My individual results do not reflect poorly on the future of M7824, but rather underscore that we still have a lot to learn about immunotherapy and cancer. While I may not have benefited from the drug, the resulting knowledge and clinical data may help guide future development and I am proud to play a part in that process.
At this point, if I received no further treatment and went on hospice, my likely survival would be about two months – although every patient is different. I have scheduled an appointment with my oncologist at MSKCC to discuss the pros and cons of chemotherapy at this stage, but the balance between quality of life and quantity of life is not trivial and I haven’t made a firm decision to go in this direction. Chemotherapy may only add a month or two of survival with a negative impact on my quality of life.
While I have been very open about my disease since originally being diagnosed in December 2015 and enjoy blogging, I will now be focusing much more time with my wife and daughters and finishing up my memoir, which I hope to have published. This will unfortunately mean less time for updating this blog and responding to emails.
Thank you to everyone who has offered their best wishes, thoughts, and prayers during my cancer journey. Having such an amazing support network of family, friends, and social media contacts has been a great source of strength and inspiration. Special thanks to my wife, Lorie, who has been by my side the entire time.
If you’ll indulge me, I would like to end this post with three requests:
If you have a son or daughter, please talk to your doctor about the HPV vaccine, which protects against cancer of the cervix, vagina, and vulva in women; penis in men; and cancers of the anus and head/neck (including the base of the tongue and tonsils) in both men and women. HPV is a very common virus; nearly 80 million people are currently infected in the United States. About 14 million people, including teens, become infected with HPV each year, resulting in 30,700 cancers in men and women. HPV vaccination can prevent most of the cancers (about 28,000) from occurring.
Help preserve federal funding levels by communicating with lawmakers about the critical importance of investing in medical research. There are far too many people suffering from cancer and this is not the time to cut the budget for the National Institutes of Health (NIH) by 18.3 percent, about $5.8 billion, as has been proposed. In an Op Ed by Harold Varmus appearing in the New York Times on March 22, 2017, he states that only about 10 percent of the NIH’s budget supports the work of government scientists and that “over 80 percent of its resources are devoted to competitively reviewed biomedical research projects, training programs and science centers, affecting nearly every district in the country.” Harold Varmus, a professor at Weill Cornell Medicine and a co-recipient of the 1989 Nobel Prize in Physiology or Medicine, was the director of the National Institutes of Health from 1993 to 1999 and of the National Cancer Institute from 2010 to 2015.
If you or someone you know is battling cancer or another disease, please talk to a physician about available clinical trial options. Clinical trials are a key research tool for advancing medical knowledge and patient care. Such trials are important to learn whether or not a new approach works well in people and is safe and which treatments or strategies work best for certain illnesses or groups of people.
Draining the swamp is a metaphor used by American politicians, referencing actions to clean up government corruption. In my case, however, I’m referring to a treatment that involves draining the fluid from my chest cavity, either with a needle or a small tube inserted into the chest. This will treat my pleural effusion, also called “water on the lung,” which is an excessive buildup of fluid in the space between my lungs and chest cavity (see diagram).
The pleural effusion is likely the source of my coughing, shortness of breath, and other recent symptoms. I haven’t been feeling well at all lately, but once it is drained – I should feel much better.
Thin membranes, called pleura, cover the outside of the lungs and the inside of the chest cavity. There’s always a small amount of liquid within this lining to help lubricate the lungs as they expand within the chest during breathing. Certain medical conditions, such as malignancy, can cause a pleural effusion, which is likely my situation. The excess fluid prevents the lung from expanding normally.
Sometime this morning I will have the procedure and hope to provide updates when I am awake later on.
I may need this treatment more than once if fluid re-collects, but we’ll cross that bridge another time.
This is week #9 on clinical study, as I received my infusion of M7824 yesterday as planned. All of my pre-therapy vitals and bloodwork came back fine, which meant the treatment was a go. As with previous infusions, there were no issues during or after. Everything went just fine.
It was unfortunately a later night than expected, as Lorie and I just missed our 7:30pm train and had to catch one leaving the next hour. So, we ended up walking in the door at home around midnight. Could always be worse!
Following the discussion in my past few blog posts, I’ve been learning more about the concept of “pseudoprogression,” or the apparent growth of a tumor followed by sustained regression, which is common following treatment with checkpoint inhibitors. For example, I came across the video clip below by OncLiveTV that contains a discussion of “Pseudoprogression With Checkpoint Inhibitors in Non-Small Cell Lung Cancer,” where panelists explore the implications of this phenomenon for patients with NSCLC. While I do not have NSCLC, the overall concept of pseudoprogression with checkpoint inhibitors is relevant to my treatment and latest scan results – whereby the tumor growth exhibited could be from inflammation due to an ongoing positive immune response, or from an actual increase in the tumor that continues until the body’s immune system overpowers the cancer. It could also be a combination of the aforementioned. In any event, I think that pseudoprogression is an important concept for patients receiving some immunotherapies to better understand – especially when getting imaging results following treatment.
PS – anyone who knows me, knows that I’m a big Chicago Cubs baseball fan (having grown up in Chicago)…so I’d be remiss if I didn’t ask you to keep voting for retired catcher David Ross on this season’s ‘Dancing with the Stars’. In case you missed his debut performance, here’s a clip where he danced to Steve Goodman’s “Go Cubs Go” – while wearing Cubs gear.