A repeat of my bloodwork confirmed that the elevated serum creatinine levels were a concern regarding my kidney function, so the physicians ordered more intravenous hydration with saline and potassium to flush them out. As mentioned in my prior post, this is a common issue with chemotherapy (cisplatin).
They originally wanted to do the hydration Friday late afternoon. Unfortunately, that would have interfered with my getting back to Pennsylvania in time to see Megan before her Freshman formal dance. After explaining the situation, they came up with the solution of hydrating Saturday instead. While this would allow me to see Meg, it made for a short trip to Pennsylvania before heading back to NYC.
It was definitely worth the short trip. Our friend and fellow photographer Sharon Mastrosimone was kind enough to come over and take pictures before the dance. The image in this blog post is one of my favorites and alone made the night worthwhile. Many thanks Sharon!
So, here I sit at MSKCC with Lorie getting hydration on a Saturday afternoon instead of being back home in Pennsylvania. But I’m doing it with a smile on my face looking at pictures from last night. Megan looked beautiful and I’m so glad I was able to be there.
During Week #5, another common side effect from chemoradiation treatment emerged – radiation dermatitis. Just like oral mucositis discussed in a prior post, radiation dermatitis is graded on a scale – with Grade 1 being mild and Grade 4 being severe. In most patients, radiation dermatitis is mild to moderate (grades 1 and 2), but ∼20%–25% of patients experience severe reactions¹.
Right now, I have mild to moderate radiation dermatitis on my neck in the area that is being targeted. This is characterized by mild erythema (red rash), which you can see in the accompanying image. The more severe forms of radiation dermatitis are associated with itchy, peeling skin and ultimately open wounds and ulceration. I’m hoping that my condition doesn’t advance to those stages.
The treatment for radiation dermatitis is basically keeping the skin moist by applying Aquaphor ointment. No creams or ointments have shown superior efficacy over another in randomized clinical trials. This includes topical steroids and other agents.
Other than that, there is some indication that my kidney function might be impaired due to elevated serum creatinine levels. They are still running more tests, but worse case would be more frequent intravenous hydration to flush out the kidneys. Kidney function can be negatively impacted by the chemotherapy (cisplatin).
I did have intravenous hydration today and have been feeling pretty good overall. Fatigue is still my major complaint, but also par for the course.
¹ Consensus guidelines for the management of radiation dermatitis and coexisting acne-like rash in patients receiving radiotherapy plus EGFR inhibitors for the treatment of squamous cell carcinoma of the head and neck. Ann Oncol (2008) 19 (1): 142-149. doi: 10.1093/annonc/mdm400. First published online: September 4, 2007
The second round of chemotherapy and end of Week #4 was relatively uneventful – especially when compared with the first cycle when I came down with the flu. The biggest changes are increased taste alteration and fatigue.
My heart rate and blood pressure were elevated this week, so my physician ordered an extra 2-hour intravenous hydration session. Frankly, I was happy to do so – as I planned on coming home to Pennsylvania for the extended weekend.
I took the train home on Friday afternoon, but spent most of the day on Saturday sleeping which isn’t like me at all. I’m not normally one to take naps, but the fatigue from radiation and chemotherapy makes it hard to even keep my eyes open at times. I feel like I’m sleeping the entire weekend away!
Lorie’s sister Maureen is in town for a few weeks and has been a tremendous help around the house. She’s also a great cook and has been making some fabulous meals, although I just haven’t been up to eating them and have very little appetite. However, Lorie and the kids are enjoying them.
Sunday (today) is Lorie’s birthday in addition to being Valentine’s Day, which is another reason why I really wanted to make it home this weekend. I definitely owe her a proper celebration after we are past the cancer treatment, but in the meantime it will be nice to have a small celebration at home.
Monday starts Week #5 and it looks like March 4th will be my last radiation session. From what the doctors tell me, this is where things start to get rough with the treatment. Accordingly, I’m a bit nervous about what the coming days/weeks will bring…
Today was the start of week #4 for my chemoradiation treatment. It was also the second time that I was scheduled to receive chemotherapy (cisplatin) in addition to my daily radiation treatment. I receive a total of three chemotherapy treatments – one at the beginning, one in the middle, and then one at the end of my therapy.
Fortunately, I felt well enough last Friday to come home to Pennsylvania for the weekend. It was great to see my wife and kids, pets, and sleep in my own bed for the second weekend in a row. I was really glad I could make it, since I missed being with Rosie for her 18th birthday during the week while I was in NYC. I can’t remember the last time I wasn’t with her to celebrate her birthday in person, although I was able to FaceTime and sing happy birthday.
This morning, my wife and I took the morning train from Bucks County, PA into NYC for my chemotherapy appointment. I was feeling a lot of pain this morning from the mouth sores and for the first time in my throat as well. I was miserable the entire train ride, but made it to New York and we headed to Memorial Sloan-Kettering Cancer Center (MSKCC) for treatment.
The day started with radiation therapy and then an appointment for blood work and then a meeting with Nicole – the nurse practitioner before starting chemotherapy. Last week when I met with her, she prescribed gabapentin and a lidocaine gel to help manage the pain. Today when I communicated my current pain level to her, she also prescribed Oxycodone. After about 30-minutes, the pain was improving and continued to do so throughout the next few hours with the Oxycodone. Nicole also mentioned that the steroids administered as part of the chemotherapy could also help with inflammation and might help alleviate the mouth and throat pain.
My chemotherapy was scheduled for 1pm, but the routine blood test came back with some bizarre readings in the metabolic panel. In fact, had the results been correct – the nurse said my heart would likely have stopped! Needless to say, they also couldn’t proceed with chemotherapy if the results were accurate. They needed to take another blood test to determine whether or not the readings were true. Not surprisingly, the first results were wrong and the second set was perfectly normal. As a result, the chemotherapy treatment proceeded – but not until around 2:30pm.
I finally finished chemotherapy at 7:45pm and Lorie and I went to a nearby restaurant for a late dinner before heading to the apartment. The second dose of Oxycodone left me feeling little pain and I actually had an appetite. It was the first time I felt comfortable going out to eat in more than three weeks. The French toast sounded like a good bet for some much needed calories and I ate the entire portion except for some of the crust. It was a fantastic end to a day that started off a little rough.
Tomorrow is the second day of chemotherapy and then I’m back to just daily radiation for the next few weeks. It will be interesting to see how I handle this round of chemotherapy as opposed to the first round when I came down with the flu.
Yesterday marked the beginning of Week #3 for my chemoradiation treatment. By now, the cummulative effects of daily radiation have started to appear. This includes oral mucositis (where the mucosal lining of the mouth breaks down forming ulcers) and xerostomia (dry mouth). The World Health Organization (WHO) Oral Toxicity Scale measures anatomical, symptomatic, and functional components of oral mucositis¹. The scale ranges from Grade 0 (no oral mucositis) to Grade 4 (unable to eat solid food or liquids). The majority of head and neck cancer patients (83%) who are receiving radiation therapy develop oral mucositis and 29% develop severe oral mucositis².
My current assessment would be WHO Grade 2, which means that I can still eat solid foods despite the presence of ulcers (see photo of the single ulcer on the side of my tongue). Recall that I started taking Caphosol® at the start of my chemoradiation treatment. This oral rinse has been shown to reduce the severity and duration of oral mucositis in a clinical study. The study design used a different oral mucositis scale devised by the National Institute of Dental and Craniofacial Research (NIDCR), which ranks oral mucositis on a 0-5 scale where I would presently be at Grade 2 (single ulcer <1 cm). Results from the study demonstrated a peak Grade 1.38 for patients using Caphosol compared to Grade 2.41 for the placebo group. Accordingly, it will be interesting to see whether or not I develop additional ulcers or more severe oral mucositis to help determine the benefit of using Caphosol.
I received a progress report during my appointment with Dr. Nancy Lee, my radiation oncologist at Memorial Sloan-Kettering Cancer Center (MSKCC). The results are encouraging, as the tumor has markedly decreased in size over the first two weeks of therapy – characteristic for my type of cancer. The better news was that the PET imaging study looking at levels of oxygen deficiency (hypoxia) in the tumor tissue showed dramatic improvement. In particular, the pre-treatment scan showed “mild” radiotracer uptake in the primary tumor (right tonsil) and “intense” radiotracer uptake in the neck lymph node, indicating a significant amount of hypoxic tumor cells that are generally more resistant to radiation and many anticancer drugs. However, the most recent PET scan showed “no” radiotracer uptake in the primary tumor and only “mild” persistent uptake in the neck lymph node. Unfortunately, the fact that there is still some hypoxia means that they won’t be able to reduce the amount of radiation to the neck node, which could have reduced some of the side effects.
This morning I had my follow-up hearing test, which showed no change from pre-treatment. This is also good news, as the chemotherapy (cisplatin) can sometimes cause hearing loss. Next week will be my second round of chemotherapy on both Monday and Tuesday. I’m hoping that this cycle will be less eventful than the first and that I don’t contract the flu or have any other surprises.
¹ World Health Organization. WHO Handbook for Reporting Results of Cancer Treatment. Geneva, Switzerland: World Health Organization; 1979:15-22.
² Vera-Llonch M, Oster G, Hagiwara M, Sonis S. Oral mucositis in patients undergoing radiation treatment for head and neck carcinoma. Cancer. 2006;106:329–36.
In contrast to the first week, the second week of treatment was relatively uneventful. I had daily radiation therapy Monday-Friday and the effects of the flu seemed to dissipate with each passing day. Still not what I would consider back to 100%, but a heck of a lot better than how I felt last Friday!
I’m writing this blog post on the New Jersey Transit evening train heading home to Bucks County, PA for the first time since I started treatment on Monday, January 18. I normally commute to NYC daily for work, so it is a very familiar ride. But the prospect of seeing my wife and kids, family pets, and sleeping in my own bed is making the trip seem a lot longer – almost like time is standing still. I’ll spend the weekend home and then return to NYC for week three of treatment. It’s a calculated risk coming home and being far from MSKCC, especially in view of what happened last weekend. However, I fear this will be one of the last times I’ll feel up to commuting back-and-forth and I really need a distraction at the moment.
By now, I’ve started to see the same familiar faces in the men’s locker room to change before getting daily radiation. The first few times, there wasn’t a lot of discussion or interaction. Slowly, you strike up conversation that is oddly reminiscent of a prison scene from the movies. “What are you in for?” “How long is your sentence?” Stuff like that.
It’s a strange cast of characters and most of them are much older. Almost everyone I’ve spoken with seems to have some cancer involvement in the lungs that required surgical removal of at least a portion of them in addition to subsequent radiation. Then there are the real strange diseases, like the older guy who had cancer in some tissue left behind from his umbilical cord when he was an infant that spread to both his bladder and lungs. Another guy who has cancer of the eye, with visible impact. They all remark that they are at peace with their fate; ready to go if this is their time but not minding a longer stay on this earth if the opportunity is provided by the treatment. Maybe because I’m the younger one in the crowd, but not me…I’m not at all at peace with the situation and ready to fight like hell.
Truth be told, all this week I felt worse than I had originally expected. I was told the “tougher” part of therapy would be around week three or four, so it was disheartening that I felt so awful after only the first round of chemoradiation.
Moments after my brief victory lap for completing the first week of treatment, I started running a fever and felt rundown. A quick call to my oncologist and I was instructed to head over to the urgent care facility Friday night. Fortunately Lorie and Rosie were already in town to spend the weekend with me (Megan was sick and stayed back in Pennsylvania with a friend).
The snow storm hadn’t hit NYC yet, but the hospital lobby was fairly crowded. When I was seen, they took a nasal swab to test for the flu. Everything was fine until the blood test. During the blood draw, I felt lightheaded and nauseous (which never happens to me…). Immediately afterward the room started getting dark and the next thing I knew I was in another room with nurses standing around me suctioning vomit from my mouth. I had what is called a vasovagal response, which caused me to pass out and vomit.
Long story short, and despite getting the flu shot this season, the nasal swab came back positive for the flu. The flu effects are magnified in patients undergoing chemoradiation, which is why I felt so crappy this first week. The good news is that they started me on an antiviral agent (tamiflu) and hopefully I’ll be feeling much better during week two of therapy.
I was put in isolation so as not to get other fragile cancer patients sick, hence the mask and outfit shown in the accompanying image. I need to stay in the hospital for the full weekend to get IV fluids and rest, but will move forward with starting week two of radiation therapy on Monday with no interruption.
Following this evening’s (Friday) radiation treatment, I will have completed week one of my 6-7 week chemoradiation treatment schedule. No therapy is given on the weekends and I’m very much looking forward to the upcoming two-day break despite the dire winter weather forecast.
Monday and Tuesday’s chemotherapy sessions took a toll by Wednesday of this week as the nausea side effect started to really kick into gear. After switching to a different anti-nausea medication (ondansetron) later that day, things improved a bit. By Thursday, I was “mildly” interested in food again – although meals don’t quite taste the same now. Known as dysgeusia, this alteration in taste is a common complaint of patients undergoing chemotherapy and research indicates that 46-77% of patients receiving chemotherapy report changes in taste (Bernhardson, Tishelman, & Rutqvist, 2008).
I was able to move into an apartment in New York this week, which makes a huge difference in terms of commuting to both work and daily radiation therapy appointments. It’s walking distance to both my oncologist and radiation oncologist, which is quite convenient. The biggest downside is not being able to see my wife and kids daily, but I’m trying to stay focused on the relatively short duration of treatment and looking forward to being back home in a few months.
In addition to daily radiation therapy, next week’s appointment schedule includes some PET imaging studies, which will provide some insight into how treatment is impacting the cancer.
Yesterday (Jan 18) was my first day of therapy. As expected, it was bittersweet. On one hand, it felt great to finally get started with attacking the disease. The flip side is knowing what lurks around the corner in terms of side effects.
The day started at 8:45am with bloodwork and consultation with a nurse to answer any remaining questions. Next was two hours of intravenous fluids, an hour of intravenous anti-nausea medications and kidney protection medication, an hour of intravenous chemotherapy, and then two more hours of intravenous fluids. Of the six hour total infusion time, the four hours of fluids cover flushing out the kidneys, which are at risk for damage from the chemotherapy.
The time actually passed quickly. My wife and I chatted throughout, had a small lunch, checked emails, etc. Not quite a day at the spa, but no unpleasant surprises. It’s so great having her by my side! Luvya babe.
The fun wasn’t over yet. Next was a shuttle bus to the radiation center for that component of the therapy. The radiation treatment is only about ten minutes, but there is setup time, changing clothes, etc. that take up about an hour total.
You do not feel anything during the radiation treatment. The side effects come later, so literally you leave day one feeling emotionally drained but physically fine. The worst part of radiation treatment is that darn mask! The confining nature of the mask and being pinned to the table is more of a mental challenge than anything else.
Today (Tue), I woke up early at 5am feeling wide awake, which can be a side effect from the steroids they gave me. However, a short while later I started to get a bit nauseous. It was disturbing to see the chemotherapy side effect so soon after treatment, but I took a pill for nausea they prescribed and felt better after about 30-minutes.
My wife and I stopped for breakfast and I was able to order my favorite banana toast meal from Bluestone Lane and had some coffee as well. We then headed over to MSKCC for day two of chemoradiation.
For the next few weeks, I won’t have to do the 5-6 hour chemotherapy. During that period, I “simply” have daily radiation Monday-Friday. Then, around week three I go through the same two-day chemotherapy with radiation and the process repeats. The total treatment cycle is 6-7 weeks.
The biggest epiphany so far is that commuting to New York daily for both treatment and work is likely going to be too much. As a result, I’m getting a temporary apartment in NY for the next few months. Not a cheap solution, but a necessary one – especially when side effects start to appear around week three or four. Fortunately, family has been there to help offset the added and unforseen expenses (thanks again!).
Lastly, to everyone that posts on my Facebook page, comments on this blog, emails, texts me on my phone, etc. – I can’t tell you how much it means to me. The kind notes and supportive words really do keep my spirits high. Thank you!
When I first licensed the North American marketing rights to Caphosol® in October 2006 (see press release), I had no idea that nearly a decade later I would be a customer. The product is intended to treat some of the common side effects from cancer chemotherapy and radiation – both oral mucositis (inflammation of the mucous membranes in the mouth with symptoms ranging from redness to severe ulcerations) and xerostomia (dry mouth). While these side effects can occur as a result of various treatments, they are particularly prevalent in head and neck cancer patients undergoing chemoradiation like me.
It was disheartening that so many years after its commercial introduction, no physician I spoke with had heard of Caphosol. After a fair amount of nagging and discussion, I was finally able to secure a prescription this week and locate a pharmacy that carried the product in advance of starting treatment this Monday (special shout out to my wife, former colleague June, and her colleague Ken for their assistance in this regard!). This is important, as one the key clinical studies supporting Caphosol’s efficacy incorporated the product at the start of therapy. In other words, Caphosol was used before the incidence of oral mucositis or xerostomia – as a preventative therapy. The trial demonstrated that Caphosol was able to reduce the severity of oral mucositis, decrease pain and associated use of opioid analgesics, and reduce the days of neutropenia (abnormally low concentration of white blood cells in the blood) – see journal abstract from the study.
To be perfectly clear – I have absolutely no financial interest in Caphosol. However, I am a believer in the product and did extensive due diligence as part of the licensing process. As a result, I hope that this blog post can help other patients at risk for oral mucositis and/or xerostomia learn about Caphosol. While there are other agents used in the treatment of oral mucositis and xerostomia, Caphosol is unique in that the product’s efficacy was demonstrated in a randomized, placebo-controlled clinical study. Perhaps the most significant distinguishing feature of Caphosol is the high concentrations of calcium and phosphate ions. Why is this important? Calcium ions play a crucial role in several aspects of the inflammatory process, the blood clotting cascade, and tissue repair, and phosphate ions may be a valuable supplemental source of phosphates for damaged mucosal surfaces. No other product on the U.S. market is formulated this way or has the proven clinical benefit that Caphosol does.
As you can see in the accompanying image, Caphosol is supplied in a carton with 30 doses. A dose is comprised of two ampules of aqueous solutions, one containing a phosphate solution and the other containing the calcium solution. The two solutions are combined in a glass and patients are instructed to swish the resulting mixture in the mouth thoroughly and then expectorate (spit out). This process can be repeated 2-10 times per day, although four doses per day is what was used in the clinical trial.
I will report on my experience with Caphosol (good, bad, or indifferent) throughout my chemoradiation treatment over the next 6-7 weeks. My first round of chemotherapy and radiation therapy starts this Monday and Tuesday. As the treatments occupy most the day, it may not be until later this week that I post any blog updates.
It’s coincidental that after spending so many years leading a few small, oncology-focused biotechnology companies developing immunotherapies, radiopharmaceutical agents, and supportive care oncology products, I am now utilizing that experience, knowledge and network to make informed treatment decisions following my cancer diagnosis. Like driving down a familiar road, I am constantly seeing landmarks and signs that I know quite well from my time in the industry.
For example, some of the common side effects from chemotherapy and radiation therapy include oral mucositis (painful ulcers in the mucosa) and xerostomia (dry mouth). I studied these two side effects extensively as part of the due diligence process when I licensed and launched an advanced electrolyte solution called Caphosol® back in 2006. Based on this experience, I know what to expect from my chemoradiation treatment and hope to incorporate Caphosol into my arsenal against these debilitating side effects.
While the streets may be familiar at times, I am still faced with difficult decisions at some of the crossroads. The latest example arose during yesterday’s follow-up visit with Dr. David Pfister, my medical oncologist at Memorial Sloan-Kettering Cancer Center (MSKCC). Separate from my upcoming daily radiation treatments, the appointment largely focused on scheduling my three chemotherapy infusions and discussing what to expect in terms of side effects from the treatment. The chemotherapy I will receive is called cisplatin, which was first approved for use in testicular and ovarian cancers back in 1978. The list of potential toxicities includes nausea, constipation, kidney issues, hearing issues, and others. The conversation shifted to potential clinical trials and Dr. Pfister mentioned one that is exploring an alternative to chemotherapy that may have less side effects. In the study, the chemotherapy agent (cisplatin) is replaced by Erbitux® (cetuximab) – another FDA approved agent for treating head and neck cancer. Erbitux is an inhibitor of the epidermal growth factor receptor (EGFR), a receptor found on both normal and tumor cells that is important for cell growth. But the study also adds an investigational agent BYL719, which is an inhibitor of PI3K, an enzyme which fuels the growth of several types of cancer. Having worked at several companies developing inhibitors of the PI3K pathway, this was more familiar territory. However, trading the proven results with cisplatin for “potentially” similar efficacy with lower side effects from the investigational combination is a difficult crossroad.
On the one hand, the aforementioned clinical trial includes an approved agent for treating head and neck cancer (Erbitux). This is different from some other clinical trial designs that include a placebo arm or an arm with only an investigational agent. However, Erbitux has its own side effects and there are unanswered questions in the medical community regarding whether or not Erbitux is “as good” as cisplatin. As a result some physicians only use Erbitux as a replacement for cisplatin when the patient cannot tolerate cisplatin’s toxicities. In my mind, forgoing cisplatin and its proven efficacy could jeopardize the potential for cure. Partially offsetting this risk is the inclusion of a promising new investigational agent – the PI3K inhibitor BYL719 being developed by Novartis. The PI3K pathway is widely known in the oncology community as a potential target for cancer therapy – and in particular head and neck cancer. Preclinical data suggest that simultaneous inhibition of PI3K and EGFR leads to synergistic antitumor activity in head and neck cancer, but future randomized trials are required to answer the question of whether or not the combination is equal to (or better than) cisplatin. Lastly, BYL719 is an investigational agent and although it appears well-tolerated in studies to date, side effects may arise as more and more patients are exposed to the drug.
Ultimately, I decided to stick with the more established cisplatin for a variety of reasons. First, it is my understanding that the radiation therapy, which would be included regardless of whether I opted for cisplatin or the investigational Erbitux/BYL719 combination, is the driving force for both cure AND debilitating side effects. Most of cisplatin’s side effects, such as nausea, constipation, and other issues, can be partially offset with medication and hydration. Second, cisplatin has been around for decades and appears to be the gold standard in combination with radiation for Stage IV head and neck cancer and it is hard to argue with the clinical data supporting its use to date. Lastly, in the unfortunate event that my chemoradiation therapy isn’t effective – I can always explore investigational treatments as a next step.
One of my wife’s favorite artists is Georges Seurat, a French post-Impressionist painter known for his role in devising the painting technique called “pointillism.” This technique uses small, distinct dots of color that are applied in patterns to form an image. Looking at such a painting from afar, our eyes and brains blend all of the dots of color into a fuller range of tones that then form an image.
Yesterday’s meeting with the radiation oncology team at Memorial Sloan-Kettering reminded me of pointillism. Prior to the visit, I saw the complete picture from afar – it would be 6-7 weeks of treatment and the associated side effects, but there was the prospect of being cured by the end. After the meeting, however, I started seeing the hundreds or thousands of individual dots of color that represented my treatment.
For example, during the day they created the “mask” that will be used to keep my head and shoulders in the exact same place for my daily (Mon-Fri) radiation treatment. The mask is secured where you lay and prevents any movement of the head and shoulders (see example image). Unlike the older masks, there is a cutout for your eyes, nose, and mouth but coverage of the jaw largely prevents you from speaking. Frankly, it is terrifying! They did three imaging procedures in the afternoon (MRI, CT, and PET) and each one involved the mask being worn for about 30-minutes. Each time I was rolled into the imaging tube, I couldn’t help but think – what happens if I start coughing or choking? With my jaw immobilized I wouldn’t be able to do much. Trying to get past that fear, I quickly realized – wearing the mask would become a daily routine for the next 6-7 weeks.
The side effects of radiation therapy were another one of the individual dots of color that came into focus as I looked more closely at my treatment “image.” I’ve lost count of how many physicians and nurses have told me to “bulk up” now before starting therapy. Gain 10 pounds or more they say. This is due to the fact that in a few weeks it will be difficult to chew, swallow, etc. as a result of oral mucositis and dry mouth from the radiation therapy. As a result, weight loss and fatigue are to be expected.
During the day, I enrolled in two clinical trials – one for imaging and another for blood tests. The imaging study looks at levels of oxygen deficiency (hypoxia) in the tumor tissue. Hypoxic tumor cells are resistant to radiation and to many anticancer drugs and therefore tumor hypoxia influences the outcome of treatment with radiotherapy, chemotherapy and even surgery. The hope is that ruling out hypoxia in the area of the tumor could reduce the amount of radiation therapy needed to cure the disease – and thus reduce side effects. The blood test can be viewed as a type of “liquid biopsy” that detects circulating tumor cells and fragments of tumor DNA that are shed into the blood from the primary tumor and from metastatic sites. Changes in these markers may be able to predict the likelihood of disease recurrence after therapy.
It was a very long day with my first appointment starting at 9am and not finishing until around 6pm, but aside from the aforementioned and putting aside more poking and prodding (including my fourth endoscope procedure – see tiny camera getting stuck up my nose in the embedded image…), by the end of the day I felt somewhat better knowing the timeframe for starting radiation treatment, which looks like it will be Monday, January 18. In addition, I felt much better after meeting my radiation oncologist Dr. Nancy Lee (you can watch a video interview with her under the “Videos” menu tab at the top of my blog). She is fantastic! I have a follow-up appointment with my medical oncologist this Thursday, where I will learn more about the timing for starting chemotherapy.
Since I couldn’t eat all day due to potential interference with the imaging tests, the best part of the day was grabbing a quick dinner in NYC with my wife before taking the train back to Pennsylvania. It is so great having her by my side during this ordeal!
It’s been a while since my last post, so I wanted to share an update on activities over the past week or two. On Christmas Eve, I met with an oncologist at Memorial Sloan-Kettering Cancer Center (MSKCC) to discuss my case following a similar meeting at the University of Pennsylvania (UPenn) a short while before. There appears to be little ambiguity regarding my diagnosis, which both oncologists confirmed as Stage IV oropharyngeal cancer. However, the oncologist at MSKCC used an endoscope to view the tonsils, etc. and also commented after physical examination that the enlarged cervical lymph node seemed “tethered” in its location, which could indicate that the cancer was spreading outside of the node (extracapsular invasion). MSKCC’s treatment approach was chemoradiation, which is the same as UPenn had recommended (UPenn discussed my case during a tumor board and surgery wasn’t recommended there either…). At MSKCC, patients meet with each of the various specialities (medical oncologist, surgeon, and radiation oncologist) so the next step was to schedule an appointment with a surgeon to get their perspective on relevant treatment options and to schedule an appointment with a radiation oncologist, which I did.
Today was the meeting with the surgeon at MSKCC. Not unlike many patients, I am growing weary of being poked, prodded, stuck with needles, etc. and I haven’t even started therapy yet. Much to my chagrin, the surgeon wanted to perform what would be my third endoscope procedure within the past few weeks to examine my throat. In all honesty, it isn’t a horrible procedure and I’m sure in retrospect that it will be a cakewalk compared to what is waiting around the corner – but it still isn’t what anyone would call fun. For the first time, I asked questions about the resulting images from the procedure and the physician was excellent in explaining them along with his overall perspective. For example, in the accompanying image snapped with my iPhone I have indicated where you can find my tonsils (cancerous one circled in red = enemy), soft palate, and uvula. My cancer started in the tonsil and appears to be spreading inward towards the soft palate and also the lymph nodes (not shown).
Both surgery and chemoradiation are “potentially” curative treatment options for me. Some of the differences between these two options relate to side effects and maintaining quality of life going forward. In my particular case, based on the stage and extent of disease, a surgeon could theoretically remove the tonsil, lymph node, and surrounding soft tissue with the hope of getting all the cancer (clean margins). Under that scenario, I could potentially be spared subsequent chemotherapy and its toxicities and simply go through radiation therapy as a next step. However, if the surgical procedure didn’t result in clean margins – then chemotherapy would still need to be included along with the radiation therapy and the surgery would have been somewhat useless. More importantly, it would expose me to potential side effects – such as difficulties in speech, swallowing, and other issues due to the spread of the cancer to the soft palate. Armed with this insight, it was clear that surgery was an unattractive option and the plan to move forward with chemoradiation was confirmed. Baby steps, but it was nice to rule out surgery as a treatment option and focus solely on chemoradiation.
My next appointment is Monday with the radiation oncologist at MSKCC. I can’t tell you how many people at MSKCC have sung her praises and I very much look forward to meeting with her. The hope is following that initial consultation I’ll be able to (finally!) start therapy the following week. I plan on posting an update after meeting with the radiation oncologist – so for now, best wishes to all of you for a happy, HEALTHY, and prosperous 2016! Speak to you in the New Year…
One of the hardest aspects of having my particular type of cancer is the fact that it has spread to a cervical lymph node on my neck that is both visible and palpable. I am reminded of the disease every time I look in the mirror or place my hand on the area. As a result, I am quite anxious to get started with treatment despite the associated side effects. I just want it gone – now! Christmas day will be exactly one month since I first discovered the growth and I cannot help but feel that the cancer is being given too much time to grow and spread.
I mistakenly envisioned that following a “formal” cancer diagnoses (which itself takes some time waiting for biopsy and imaging results…), a SWAT team of physicians rushed in to promptly start therapy. In reality, however, it can take weeks to schedule appointments with some doctors. For some procedures, such as radiation therapy with IMRT, the process also involves complex treatment planning to deliver dose to the tumor and spare normal tissue and getting fitted for a special reinforced thermoplastic mask to hold the patient within a few millimeters for consistency each day of therapy.
Upon starting daily radiation and chemotherapy, I plan on doing a series of self-portraits to document the associated changes in physical appearance over the 7-week treatment cycle. In preparation, I took a self-portrait today so that you can see the difference in size between the right side of my neck (blue lighting; site of the cancerous lymph node) and the left side (red lighting; normal side).
To help put this in perspective, I also included a comparable image from my recent PET scan that shows the relevant lymph node as a highlighted/glowing mass in the same general area. In case you were wondering or alarmed – no, I don’t have brain cancer. The brain also lights up on a PET scan in extremely intelligent individuals. Just kidding – the brain always lights up as glucose is the predominant substrate for brain metabolism and PET imaging utilizes radiolabeled glucose.
Today was my first appointment with a medical oncologist at the University of Pennsylvania (Penn Medicine). It was a surreal experience to say the least. The waiting area was filled with cancer patients at various stages in their disease, ranging from newly diagnosed (me) to recurrent disease patients. I couldn’t help but wonder – which of this cast of characters would I identify most with in the coming years? Some of the patients looked quite weary from their battle – tired and frail. Unfortunately I was no longer an outsider, but rather just the latest soldier enlisted to fight a common enemy. It was disheartening.
While I read the radiology report from my PET scan last Friday, I couldn’t view the images on the Windows-only CD-ROM. Today, the medical oncologist pulled the images up on a computer screen in his office and for the first time I saw the “enemy.” The bright, glowing areas in the accompanying image represent the cancer. One spot is the tonsil (where the cancer originated) and the other is the lymph node (where it has spread). Both locations are on the right side of my body and the image is seen from the perspective of looking through my body from my feet up towards my head, which is why it looks reversed. You can see familiar skeletal landmarks in the image, such as the jaw bone and teeth in front and spine in the back. FYI – when I got home I was able to view/extract this image using a software program for Macs called OsiriX and you can obtain a free copy by clicking here if you ever get a Windows-based CD with radiology images on it!
The doctor confirmed Stage IV oropharyngeal cancer. The location of the disease near the carotid artery would make surgery difficult, but that would be discussed at a tumor board later in the day. The combination of radiation and chemotherapy would be the most likely initial treatment. In this scenario, the chemotherapy (cisplatin) is used to make the cancer cells more susceptible to the accompanying radiation treatment. The entire course of therapy would span 6-7 weeks and comprise daily radiation treatment Mon-Fri, with chemotherapy spread throughout. The goal of the treatment would be to eliminate all of the cancer, which I’m reluctant to call a “cure.”
There is no sugar coating the side effects from treatment, especially towards week 4 and beyond. The effects of radiation exposure are cumulative and will get worse with each cycle. It will be hell. However, there is a chance that the treatment will be effective – and it is that hope that will help get me through it.
The next step is to meet with a radiation oncologist and discuss various options, such intensity-modulated radiation therapy (IMRT). IMRT is an advanced mode of high-precision radiotherapy that uses computer-controlled linear accelerators to deliver precise radiation doses to a malignant tumor or specific areas within the tumor. However, Penn is one of the few centers in the region to offer newer “Proton Therapy.” A proton beam conforms to the shape of a tumor with greater precision while sparing healthy tissues and organs. This could lower the side effects of radiation therapy and may be an option for me depending on feedback from the radiation oncologist.
The main side effects from chemotherapy include hearing loss, which is why I need to schedule a hearing test to get a baseline. If there are any issues with hearing loss before therapy, it could preclude the use of cisplatin and other chemotherapies would be considered. Radiation therapy can lead to dental problems, which necessitates also meeting with a dentist at Penn. Best case is that all of these meetings can be coordinated on the same day as a follow-up with the radiation oncologist and I’m waiting to hear back on scheduling. In the meantime, I have an appointment with a medical oncologist at Memorial Sloan-Kettering next week – as I am an advocate of getting a second opinion when it comes to major health matters. My hope is to begin therapy within the first few weeks of January.
I felt like too much time had passed since initially discovering the lump on my neck (a little over 2-weeks ago) to the actual diagnosis of cancer, so I promptly began researching experts in the area of head/neck cancer. Fortunately, my background in the biotechnology industry provided some close connections in the oncology community and I reached out to one of them (Dr. Susan Slovin, an oncologist at Memorial Sloan-Kettering Cancer Center, MSKCC). She referred to me to Dr. David Pfister at MSKCC in New York. It didn’t take me long to figure out that this was a great fit, as he was part of the team who treated actor Michael Douglas. Michael Douglas received a diagnosis of stage IV oropharyngeal cancer in 2010 and spoke about his experience at a medical conference in 2014, which you can read by clicking here. I scheduled the first available appointment with Dr. Pfister and also set up an appointment with another oncologist at the University of Pennsylvania. I’m not the most patient person in the world, so waiting over a week for initial consultations didn’t sit well with me. I wanted to know the treatment options and plan – and more importantly, I wanted treatment ASAP. Every day looking in the mirror and seeing the large lump on the right side of my neck was a constant reminder of the disease.
Having already recently gone through a CT scan with contrast, I wasn’t overly apprehensive about the PET/CT scan. In fact, the biggest issue for me was not being able to drink anything other than water until after the procedure that was scheduled for late in the morning. Being an avid coffee drinker, this was quite stressful! I was brought to a room where the radioactive injection was administered and then waited approximately an hour for the drug to circulate before being scanned. This was a much longer procedure than the original CT scan and took around 2-hours total. By now, I was familiar with the online patient portal that provided very quick results from imaging studies performed at St. Mary’s. By mid-afternoon I was able to read the radiology report online. The report indicated that the cancer likely originated in my right tonsil and had spread to nearby lymph nodes.
This is the point where having a background in oncology is both a blessing and a curse. I knew that “staging” describes the severity of a person’s cancer based on the size and/or extent (reach) of the original (primary) tumor and whether or not cancer has spread in the body¹. This is important for several reasons:
Staging helps the doctor plan the appropriate treatment.
Cancer stage can be used in estimating a person’s prognosis.
Knowing the stage of cancer is important in identifying clinical trials that may be a suitable treatment option for a patient.
Staging helps health care providers and researchers exchange information about patients; it also gives them a common terminology for evaluating the results of clinical trials and comparing the results of different trials.
As a tumor grows, it can invade nearby tissues and organs. Cancer cells can also break away from a tumor and enter the bloodstream or the lymphatic system. By moving through the bloodstream or lymphatic system, cancer cells can spread from the primary site to lymph nodes or to other organs, where they may form new tumors. The spread of cancer is called metastasis. In view of the fact that my cancer originated in the right tonsil, I knew that based on the PET/CT imaging results it had already spread from the primary site to the lymph nodes (not good).
Using the oral and oropharyngeal cancer staging criteria for tumor (T), node (N), and metastasis (M), also known as TNM, I had stage IVA cancer of the tonsil due to the fact that the enlarged lymph node measured more than 3cm and/or may be in more than one lymph node².
This afternoon, I received a call from my ENT confirming what I had already known or suspected – based on the biopsy results I had cancer. In particular, squamous cell carcinoma. Doctors describe cancer by its grade (G), which describes how much cancer cells look like healthy cells when viewed under a microscope. If the cancerous tissue looks very different from healthy tissue, it is called poorly differentiated or a high-grade tumor. The cancer’s grade can help the doctor predict how quickly the cancer will spread. In general, the lower the tumor’s grade (such as G1 or G2), the better the prognosis. In my case, unfortunately the cells were poorly differentiated (G3 or G4).
The cancer was in the enlarged lymph node, but that was only one of the locations where it had spread. We needed to know where the cancer originated. Based upon a review of the various markers evidenced in the pathology report, I grew increasingly concerned that the cancer started in my lungs. The next step was to perform a PET/CT scan to reveal the primary source of the disease.
It was the day before Thanksgiving and I was waiting for the water to heat up before getting into the shower. Glancing at my reflection in the mirror, I noticed that the right side of my neck looked a bit larger than the other side. Placing my hand on my neck, I could easily feel an unusual lump just under my jaw line that clearly wasn’t there the day before. It was a solid mass and wasn’t sore at all to the touch. A quick search on Google made me nervous enough to reach out to my general physician and they were kind enough to get me in that afternoon. I’m not generally a pessimistic person, but I had already prepared myself for either lymphoma or head/neck cancer.
Remarking that he could sense the level of concern on our faces, the physician suggested that the lump was a blocked salivary gland and that such a condition could be either painful or not. He prescribed an antibiotic (levofloxacin, 500mg) and stated that the lump should decrease after a few days unless there was a stone or other obstruction causing the blockage. In any event, I was to follow-up with him around Monday unless there was severe pain or discomfort in which case I could consider going to the emergency room over the weekend. In the back of my mind, I was still convinced we were dealing with something different. As stated in the peer-reviewed literature, “More than 75% of lateral neck masses in patients older than 40 years are caused by malignant tumours, and the incidence of neoplastic cervical adenopathy continues to increase with age.”¹