Coming Home

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.

That Escalated Quickly…

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).

Michael Becker at Urgent Care Center at Memorial Sloan-Kettering

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.

Never a dull moment!

Week One and Done

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.

Treatment – Day One and Two

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.

Michael Becker in chemotherapy lounge at MSKCC

Michael Becker in chemotherapy lounge at MSKCC (click to enlarge)

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!

Reunited

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.

Michael Becker and the oral mucositis and xerostomia treatment Caphosol

Michael Becker reunited with the oral mucositis and xerostomia treatment Caphosol (click to enlarge)

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.

Crossroads

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.

295077-smallWhile 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.

 

Pointillism

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.

IMRT mask

Example of the type of mask used during radiation therapy for head & neck cancer

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.

FullSizeRender

The doctor uses a flexible, lighted tube called an endoscope to examine areas of the head and neck that are less accessible. The tube is inserted through the nose after applying a topical anesthetic (lidocaine – applied directly to the nose and throat) to make the examination more comfortable.

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!