Very long day, so I’ll keep this post brief. Lorie and I stayed overnight in NY yesterday due to the early procedure scheduled this morning at MSKCC. My appointment was at 9:15am and I was scheduled for the operation to start around 10:40am. However, my slot got delayed and I didn’t head into surgery until around 2pm!
The good news, if there is any, is that thoracic surgeon Dr. Park was able to get sufficient tissue from the suspicious lymph node via the bronchoscopyapproach and he didn’t need to do the surgical resection to go after the other nodules in my lungs.
The biopsy results will take a few days, but it is clear from the surgeon that the node they biopsied didn’t look “healthy.” Given that disease progression to the lungs is relatively common in advanced head and neck cancer, in my opinion the biopsy will most likely confirm spread of the original cancer to the lungs. Or, it could just be an unrelated new lung cancer just showing up now.
I hope to have more to report in the New Year but for now am relaxing in the passenger seat as Lorie drives us home. She’s such a trooper and I know my cancer returning isn’t easy for her.
Early this morning, I had my biopsy consultation with surgeon Dr. Bernard Park, deputy chief of clinical affairs, thoracic service at Memorial Sloan-Kettering Cancer Center in NYC. During the meeting, he presented the pros and cons for a couple of scenarios.
The first and most attractive option is a bronchoscopy, which is an outpatient procedure that allows a doctor to look at my airway through a thin viewing instrument called a bronchoscope. During the bronchoscopy, the doctor will remove tissue from a suspicious lymph node near my airway. If they can determine the presence of cancer during the procedure, then we are done with the biopsy portion.
The second option is a wedge resection, during which the doctor will remove a portion of my lung around one of the suspicious nodules that showed up on the PET scan. This is an inpatient procedure and may include several days in the hospital.
Dr. Park offered to combine the two options, where he will begin with the bronchoscopy and only do the wedge resection if necessary during the same procedure. This spares me from having to schedule two separate procedures and potentially delay results.
The biopsy procedure is scheduled with Dr. Park on Thursday, December 29th. Assuming the results are as expected, the next step is to meet with my oncologist Dr. David Pfister at MSKCC on Tuesday, January 10th, 2017.
As you can tell in the accompanying photo taken by my lovely wife, I’m so glad to be traveling back home on New Jersey Transit on the Friday before Christmas.
It’s that time of year again; where we get together with family and friends to celebrate the Thanksgiving holiday. It is also a time for reflection and appreciation, which has even greater meaning for me this year.
It was the day before the Thanksgiving holiday in 2015 when I first discovered a suspicious lump protruding from the right side of my neck. The formal diagnosis of Stage IV oropharyngeal cancer would occur several weeks later, but I knew at the time that the palpable growth just below my jaw line was anything but benign.
As a senior executive working in the field of biotechnology, and in particular the area of oncology, being diagnosed with cancer was difficult – but hearing “Stage 4” was especially disheartening. While staging systems are specific for each type of cancer, in general the cancer stage refers to the size and extent of the disease and is assigned a number from 1 to 4. If my cancer was confined to the right tonsil (where it started…) and hadn’t spread elsewhere, I would have been diagnosed with Stage 1 disease. Localized spreading would have been Stage 2 and depending on the extent of involvement of nearby lymph nodes – progress to Stage 3. When cancer has metastasized, or spread to other organs or throughout the body, it can be classified as Stage 4 and may also be called advanced or metastatic cancer. Stage 4 usually carries a grim prognosis compared to earlier stages of the disease.
Accordingly, when one is diagnosed with Stage 4 cancer, the immediate concern is whether or not the individual will be able to survive the disease. For me, however, the bigger concern was surviving the treatments and their side effects. In particular, my experience licensing and launching a product to treat oral mucositis made me very familiar with this debilitating side effect from both radiation and chemotherapy.
When reviewing treatment options with Dr. David Pfister, my medical oncologist at Memorial Sloan-Kettering Cancer Center (MSKCC), I was really hoping that I would be a candidate for recent advances, such as biologic agents and immunotherapies. This was due to my familiarity with their targeted and less toxic profiles, especially when compared with chemotherapy and radiation. In fact, back in early April 2010 I published a 150-page industry report titled “Cancer Vaccine Therapies: Failures and Future Opportunities” and later that year held the inaugural “Cancer Immunotherapy: A Long-Awaited Reality” conference that took place at the New York Academy of Medicine in New York. For more information and background on immunotherapy, read “Insight: Training immune system to fight cancer comes of age” by Bill Berkrot of Reuters.
Unfortunately, approved targeted agents like Erbitux® (cetuximab) still require combination with radiation therapy and its associated side effects. Immunotherapies, such as Opdivo® (nivolumab) and Keytruda® (pembrolizumab) were only recently approved by the FDA to treat head and neck cancer, but their initial indications are limited to patients with disease progression during or after chemotherapy. I remain hopeful that use of these and other new agents will expand to newly-diagnosed patients going forward and that ultimately we no longer rely upon chemotherapy or radiation to treat this disease.
Nonetheless, it is encouraging to see two new drugs approved to treat head and neck cancer this year and know that there are options for me in the unfortunate event that my disease returns. In this regard, I was glad to help ring the Nasdaq Stock Market Opening Bell last month to celebrate cancer immunotherapy advances and the one-year listing anniversary of the Loncar Cancer Immunotherapy ETF (Ticker: CNCR). I first met Brad Loncar (@bradloncar on Twitter), Chief Executive Officer of Loncar Investments, at my inaugural cancer immunotherapy conference and he was kind enough to extend me an invitation to the Nasdaq event.
Ultimately, I went through seven weeks of daily radiation and three cycles of chemotherapy at the start of this year, which as actor Michael Douglas was quoted “somehow seemed very accurately mapped to the seven circles of hell.” In 2010, Michael Douglas was also diagnosed with Stage 4 oropharyngeal cancer and went through the same treatment regimen at MSKCC in New York.
So, while this year started off rough (understatement), I am extremely lucky and thankful to have no evidence of cancer following treatment and to finally be free of “most” of the debilitating side effects from therapy. For example, in recent months I have noticed a dramatic improvement in both energy level and saliva output and have started to reverse a 40-pound decline in weight I experienced during and after treatment.
Aside from eternal gratitude for my wife and daughters’ love and support throughout the process, I would like to extend a special thanks to all of the healthcare providers at MSKCC for their superb care. From my “dream team” consisting of medical oncologist Dr. David Pfister, radiation oncologist Dr. Nancy Lee, and surgeon Dr. Benjamin Roman to amazing nurse practitioner Nicole Leonhart and all of the others who cared for me. I wouldn’t be here today without you!
For my family, friends, and colleagues – too numerous to name – thank you again to EVERYONE that helped in some way…the thoughts, emails, prayer chains, food deliveries, financial support, hospital visits, etc. were all greatly appreciated.
My next PET scan is scheduled for early February 2017 and I hope to report that all remains clear around that time.
PS – as a native of Chicago and loyal fan, I am also thankful to have witnessed the Cubs baseball team winning the World Series for the first time in 108 years in 2016! Go Cubs Go!
In my prior post, I referenced seeing my head and neck surgeon to investigate recent changes to my voice and swelling in my neck. Although there was nothing suspicious upon visual examination, he wanted to confer with both my medical oncologist and radiation oncologist to determine whether or not an imaging study was warranted. Much to my surprise, I received a call back after the Memorial Day holiday stating that they wanted to move up the date for my first post-therapy PET scan, which was originally scheduled for July 19.
For head and neck cancer, this first PET scan following chemoradiation therapy is a big deal. A “complete response” to therapy based on PET assessment is associated with a high probability of regional control (only 2.3% regional failure rate) and a five year overall survival rate of 79.8% based on long-term follow-up in a large uniform cohort at Memorial Sloan-Kettering Cancer Center (MSKCC, see reference below). With a suspected incomplete response on the first PET scan, the 5-year overall survival rate dropped to 57.0% in the same study.
My PET scan was rescheduled for late in the day last Friday (June 3), which meant that I wouldn’t receive a phone call with the results until today (Monday). It was worth the wait, however, as the report from my PET scan couldn’t have been better. There was no accumulation of the radio tracer in my tonsil, the previously enlarged lymph node, vocal cords or any other area of concern. Sometimes there is inflammation and other artifacts from treatment that radiologists can’t rule out as residual disease and therefore cautious language can be used in the radiology report, which wasn’t the case for me. Additionally, there was a marked decrease in the size of the infected lymph node.
Personally, I’m not a fan of the terms “cure” or “cancer free” – since right now there’s no way for doctors to know with certainty that all of the cancer cells in my body are gone. In fact, some cancer cells can remain unnoticed in the body for years after treatment. So for now I prefer to embrace the phrase “complete response,” which references the disappearance of all signs of cancer in response to treatment.
If cancer cells do come back, it often happens within the 5 years following the first diagnosis and treatment. In this regard, I’m optimistic about the expected 80% 5-year survival rate – especially when compared to some other aggressive cancers, such as pancreatic cancer, which is associated with a 5-year survival rate of only 8% (American Cancer Society. Cancer Facts & Figures 2016. Atlanta: American Cancer Society; 2016).
I meet with my radiation oncologist in a few weeks and will learn more about how frequently I will need to have follow-up PET scans and other visits. Until then, I’m trying to digest the positive news, looking forward to slowly regaining some control over my life, and appreciating the coincidence that yesterday cancer survivors and supporters in communities around the world gathered to celebrate the 29th annual National Cancer Survivors Day® (June has been designated National Cancer Survivors Month).
Thank you to everyone (far too many to name…) who supported me during this difficult period – but especially my wife Lorie who has been absolutely amazing through all the ups and downs (luvya!).
This week I was able to move out of my temporary apartment in New York and return home to Bucks County, PA. I don’t know whether it was being away from the loud traffic noises or just finally sleeping in my own bed, but the first night home was the best night’s sleep I’ve had in weeks.
As predicted by my physicians and nurses, the weeks following chemoradiation were the most difficult in terms of toxicities due to the delayed effects of therapy. For me, week #8 was the worst and I required additional hydration pretty much every other day during that week. This was due to the fact that my electrolyte levels, in particular magnesium, were low. Fatigue was probably the greatest side effect, but in general I just felt like I had a really bad case of the flu.
By week #9 the physicians indicated that my electrolyte levels had stabilized and/or improved, meaning that I didn’t require as frequent hydration. That gave me the freedom to return home since I didn’t need to be near MSKCC.
My salivary output and taste buds are still off as a lingering effect from the chemoradiation therapy, although I understand they should return over time. This makes it difficult to eat – or at least find food that is appealing. I’ve lost more than 20 pounds since the start of treatment, which doesn’t disappoint me as much as my doctors.
I’m hoping to return to my daily commute to NY for work later this week and get back to a relatively normal life. The radiation burn marks on my neck are nearly gone and you’d hardly know by looking at me that I just went through seven weeks of pure hell.
My post-treatment visit with Dr. Nancy Lee has been scheduled for mid-May 2016 which is when I’ll get my first update on the treatment efficacy. She did order a PET scan on my last day of treatment, which looked encouraging although you cannot draw any definitive conclusions at this early stage. Nonetheless, there was decreased fluorodeoxyglucose (FDG) uptake in the right tonsil and in the rim corresponding with the neck nodal mass. Interestingly, the neck nodal mass also originally measured 4.0 x 2.6 centimeters and now measures 2.3 x 1.6 centimeters, which is a dramatic decrease in size.
Friday marked the last day of my seven week chemoradiation therapy journey. Aside from some routine follow-up appointments and recovering from lingering toxicities, I will now wait several months for the repeat PET scan that will provide some insight as to whether or not the treatment was a success. Of course, I’m trying to stay optimistic that the combination of radiation and chemotherapy treatments that I endured over the past seven weeks successfully eliminated all of the cancer – but there is always that nagging thought that it did not and that leaves a pit in my stomach.
Fortunately, on Friday I was able to take home with me the dreaded radiation mask (see enclosed image). No longer will I need to wear this mask for daily radiation therapy, which makes me VERY happy. The nuclear technicians offered humorous insight as to what other patients do with their masks after radiation treatment is done. Some make decorative items, such as flower pots. Others simply burn them in a sadistic revenge ceremony, which I must admit holds a certain type of appeal. Although it somehow conjures up thoughts of Darth Vader’s helmet, last seen burning in a funeral pyre in ‘The Return of the Jedi,’ winding up in the hands of Kylo Ren in the ‘Star Wars: The Force Awakens’ movie…
Regardless of what I do with my mask, I am enjoying a certain freedom knowing that I’m no longer beholden to a daily treatment schedule and that I have received the very best treatment possible for my disease by the entire team at Memorial Sloan-Kettering Cancer Center (MSKCC). It is amazing how quickly the seven week treatment cycle passed and it all seems like a blur right now. While I did not look forward to the daily radiation treatment, the appointments were at least a reminder that I was doing something to treat the disease. Now I have that same empty feeling that plagued me when I was first diagnosed and searching for the best treatment – the feeling that I should be doing something but cannot.
Today was my last chemotherapy appointment. It was bittersweet watching the final drops of cisplatin fall from the bag, stream down the winding tubes, and finally enter the intravenous line into my vein.
On the positive side, I was able to complete all of the three cycles of chemotherapy that are associated with the encouraging survival rates published by the physicians at MSKCC. Some patients don’t make it through all three cycles due to side effects, and I was nervous earlier this week when I started running a fever that they may skip the last cycle.
On the negative side, the week following chemotherapy has been difficult for me in terms of nausea and a general sense of feeling crappy. On top of that, the doctors keep reminding me that the coming few weeks will be the toughest. This is due to the cumulative effects of both radiation and chemotherapy, as the two therapies continue to exert their toxic effects even after they are discontinued.
Fortunately, I was joined not only by Lorie but also my youngest daughter Megan. Megan was able to come to NYC thanks to Lorie’s best friend since 3rd grade of elementary school – Debby Novack. She came into town to help out after Lorie’s sister went back to Illinois after her three week tour of duty. Not an overly exciting day for Megan sitting around the chemotherapy suite and shuffling between various appointments, but it was great having her there.
The following two days (Thursday and Friday) are also my final days of radiation therapy. It will be so nice to have at least part of my life back next week – not having to be a slave to the daily treatments and the three chemotherapy cycles. Any remaining doctor appointments will simply be routine checkups leading up to a PET scan in approximately 3-4 months to determine in part whether or not the treatment was successful or if further intervention is needed.
Most important, my lower back pain has greatly subsided and I can get up and down much better than even a few days ago. Either the muscle spasm went away on its own or the myriad of pain medicines and muscle relaxers finally started working. Regardless, I’m happy and better positioned to deal with the coming weeks with one less ailment to worry about.
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.
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!