My dear friend George died on July 15, 2014 from brain cancer. His death left me tongue-tied for several months. Here’s the back story. Continue reading Survivor Guilt
Written by George Celia, Fall of 2013, following surgery for primary brain cancer. George died on July 15, 2014.
I have received four High-dose Interleukin-2 (IL-2) cycles at Providence Cancer Center. Following the second cycle, a CT scan was taken to see whether I am responding to the treatment. My oncologist found that my tumors had regressed by about 20% and my reward was two more cycles of IL-2.
Following the fourth cycle in June, 2014 my oncologist inspected the images from the CT Scan and reported, “I am seeing a 2 millimeter regression in your tumors. That means that you are eligible for the last two cycles of IL-2.”
I said, “I’m very happy to be eligible for the last two cycles of treatment. But I’m disappointed that the regression sounds miniscule, less than the margin of error in image resolution.”
Doctor replied, “It’s not miniscule, but smaller than required to classify you as Partial Response. In research terms, this result is classified as Stable Disease. I recommend that you complete the last two cycles of IL-2. It’s important that you complete the last two cycles because our research shows that people who get all six cycles have longer survival. Six weeks after the last cycle, we will order a CT-PET scan. This PET scan will light up areas with a high metabolic rate, including remaining any active melanoma. Your tumors are mostly composed of necrotic cells, which aren’t threatening. If we see active cancer cells around the periphery of these tumors we will consider radiation and other options. I’d rather wait and see before we discuss these options. It is possible that you won’t have any active melanoma after your last treatment, and in that case we will not do further treatment.”
Completing the treatment was a “no-brainer” for me; the likelihood of helping far outweighs the likelihood of harm. I said, “OK, the next step is clearly – continue the treatment.”
I also wanted to wrap my mind around my status as Stable Disease, to discover more about Providence findings about IL-2 treatment outcomes, and whether Stable Disease can be a durable outcome. A quick online search led me to Durable responses and reversible toxicity of high-dose interleukin-2 treatment of melanoma and renal cancer in a Community Hospital Biotherapy Program by Roxanne Payne and others. This paper discusses an analysis of outcomes for 500 patients receiving IL-2 treatment at Providence from 1997 – 2012.
I studied the results in the paper, including tables and graphs. This confirmed my belief that patient longevity varies a lot and will be correlated with response to treatment. Response is classified from most desirable to least desirable as: Complete Response, Partial Response, Stable Disease, Progressive Disease. Best Response refers to the most desirable response achieved in the course of treatment.
Median survival for Complete Response is more than 5 years, for Partial Response is 40.7 months and for Stable Disease is 32.6 months. These are averages. Some patients have outcomes significantly better or worse than the average.
The paper reports that a significant fraction of patients with less than Complete Response needed no additional treatment following IL-2. About ten percent (9.5%) of the patients with a best response of Partial Response or Stable Disease required no additional treatment.
My conclusion is that I could expect to enjoy a durable remission (more than 5-year longevity) if my best response improves to a Complete Response during the upcoming treatment. If my response remains Stable Disease, or Partial Response, I have a small, but statistically significant hope for 5-year longevity. However, I’m not liking the one in ten odds; this leaves me asking myself, “What else can I do to strengthen the efficiency of my Immune System?”
The prompt for today’s writing assignment was: “Pay attention to the messages from your body. Ask your body – ‘what do you want?’ Write about the experience of tuning into your body.” This is what I wrote:
“The body knows,” writes the author of Radical Remissions.
My experience is that while the body may know, the mind is inclined to doubt. This is especially noticeable during this week when I’m due for a CT scan to check disease status.
I spend several minutes each day listening to my body speak to me in the language of notable physical sensation: tension, pain, discomfort, fatigue, heaviness, breathlessness. I’m listening for reassurance that T-cells are winning and cancer cells are losing the epic struggle for an average lifespan. But the body is seldom capable of giving an unequivocal message that all is well.
I think the problem is partly attention bias. My body listening tends to ignore long periods of painless and carefree existence and then over-dramatize unpleasant sensations.
Oregon Health Sciences University (OHSU) offers several valuable alternative-health programs for the public. Following my diagnosis of metastatic melanoma, I joined a Men with Cancer Writers Group, which meets weekly on Friday afternoon. The mens group, facilitated by Ryan Voelker, is one of several groups for writers developed by Dr. SuEllen Pommier.
OHSU writers groups are based on the Amherst Writers Method. At each meeting we write from two to four stories in response to a prompt offered by the group facilitator. Following each writing exercise, we have an optional opportunity to read our writing and receive comments regarding what group members appreciated about our story and writing.
This group helps me explore dormant and present thoughts and feelings–a helpful exercise that will contribute to my healing. I find the experience feels encouraging and safe.
The prompt was: “Write a piece where nothing takes place outside of a small room. Describe the interior, and it’s occupants but don’t go outside the room.” This autobiographical piece is what I wrote:
The sign on the wall reads “This is Doable” in calligraphed letters decorated with colored pencil filagree. A hospital bed surrounded with medical paraphernalia: monitors, drip cart, oxygen, and hospital work station dominates the floor space.
The man in bed has a tube running from an infusion pump to a portal inserted at a vein between neck and chest. He is resting as an exorbitantly-expensive liquid laced with Interleukin-2 is pumped into his bloodstream. He looks pensive, but not appear to be suffering pain.
A woman stands by his bedside. She is slender, maybe thin, and the lines on her face seem to say “Yes dammit, I am worried!” She fidgets and says, “Are you feeling OK? Can I get you some tea or more water?”
Without waiting for an answer she hands the Starbucks cup and says, “Here take this water; you need to stay hydrated.”
The man is thinking, “Amazing that getting medicine by infusion doesn’t hurt. I cannot even feel it. Thank god for small blessings. I’m not thirsty and don’t want this water — best to drink a sip and set it back on the tray. I wish she wouldn’t worry about me so much.
A week in a small hospital room for IL-2 is like that: Full of tiny interactions and non-events. Minutes go by so slowly…