Mark Becker talks about living with GIST in this member story. Occasionally I have read that some survivor says that getting cancer was the best thing that ever happened to him. I think, “That person is insane.”
We all have a story to tell. The story may help explain how we live our lives and why we are who we are. It may not; but I have not yet met a person who has lived with cancer and has not been changed by the experience. This story is about my experience living with cancer and participating in a recent clinical trial.
My experience living with GIST began in February, 1997 with a case of constipation so acute I had to leave work. My family doctor examined me and found a mass in my rectum. Unsure of what it was, he called a local surgeon to schedule a consult for me that afternoon.
The surgeon examined inside my rectum with a pencil-thin video camera and determined that my rectum was ninety percent obstructed by the mass. By that afternoon I was a patient at the local hospital, where I was diagnosed with leiomyosarcoma. My wife and I were stunned and pretty much left on our own to decide what to do next. The surgeon generously offered to remove the tumor but I thought there were probably better options out there somewhere. I asked for suggestions for a second opinion and decided on Fox Chase Cancer Center in Philadelphia after talking on the phone with the surgeon there, Dr. John Hoffman. It was only a half hour away and had an excellent reputation, as did Hoffman.
At our first meeting at Fox Chase, my wife, Janet and I met with Dr. Hoffman, who continues now as my surgeon and attending physician. We also met Dr. Margaret von Mehren, my current oncologist, who has since become a widely recognized GIST specialist and Dr. Richard Greenberg, oncology urologist and surgeon. All are wonderful people, medical professionals, researchers, and physician teachers.
For nine months, this exceptional team treated me. Under the care of Dr. von Mehren, I had three months of chemotherapy during late winter and required three to four days a month of in-patient IV chemo via an implanted port. I became weak. My appetite waned and my weight dropped quickly. My hair fell out which was a bizarre experience although I have to admit, I did enjoy not having to shave. I could have done without the public stares; no hair, eyebrows or eyelashes and the pale skin and gaunt appearance made for a different fashion statement. People frequently did not recognize me. Tall, thin, hairless and apparently menacing-looking in my black leather trench coat with dark glasses, people parted to either side as I walked along the downtown Philadelphia city sidewalk. I frequently caught people staring at me. I felt freakish, but I knew my appearance was temporary so I put the experience aside emotionally. Eventually, I had to give myself daily injections of Neupogen for my blood count and to ward off the risk of infection which kept me home, away from those crowds of people.
When chemo was over, I began radiation therapy. I drove to Fox Chase first thing in the morning, every weekday for six weeks for my dose of radiation (rads). Soon after beginning, my bowels seemed to cook with a burning sensation as the daily radiation dose drilled into the tumor. Although not as physically taxing as the chemo, the pain in my guts was a constant reminder of my situation. I smeared lidocaine ointment regularly on my burning anus. At the end of six weeks, I got a month off from treatment to recuperate and prepare for surgery to remove the tumor. I also can no longer have radiation treatment in my pelvis area as I have had the maximum amount of rads a person can have in a lifetime.
In June of 1997, Dr. Hoffman operated, removing my rectum as well as my bladder and prostate as the cancer had also spread to those organs. Over the course of eleven hours of surgery, both Dr. Hoffman and Dr. Greenberg removed all afflicted tissue and created an internal urinary diversion called an Indiana pouch created from the right side of my colon to which my urethras were attached and a stoma created in my lower abdomen so that I could catherize myself to urinate. My colon was connected directly to the rectal stump allowing me to eliminate feces as before since my sphincter muscle was fully functional. I also had a temporary colostomy to allow my bowels to heal.
The recovery was long, physically difficult and emotionally and psychologically painful. I remember little from the Intensive Care Unit after surgery other than snippets of visits from family and friends through a fog of medication. However, the nursing staff was wonderful and made the time bearable with excellent attention to my recovery. After over a week, my wife brought me home to continue to heal and deal with my new anatomy.
After six weeks, my body was healed and I elected to return to Fox Chase to have my colostomy reversed. I returned home after that surgery to heal again. After about a week, I developed severe abdominal pain which early one morning reached a point where I was vomiting feces and experiencing unbearable pain. At the local hospital, an x-ray showed a complete bowel obstruction. I was transferred to Fox Chase by ambulance. Dr. Hoffman quickly appeared and determined that immediate surgery was required to save me. He discovered that scar tissue and adhesions had caused my bowels to clog shut. He fixed me and eventually I went home to live my life with frequent visits to Fox Chase to followup with the members of my medical team over the following years.
I went back for a regularly scheduled follow-up with Dr. Hoffman coincidentally at five years, expecting to get a clear bill of health and walk out an official cancer survivor. Instead, Dr. Hoffman told me that the cancer was back and he would have to remove my entire bowel. Also, the required clear margins would result in damage to the sciatic nerves leaving me with limited use of my legs and a permanent colostomy. I was devastated. As an alternative, he set up a consult with a radiologist to discuss the possibility of implanted radiation seeding in my pelvis to reduce the size of the tumor and the surgically required clear margins and spare some damage.
In the course of that consult, the radiologist suggested I speak with Dr. von Mehren regarding a new drug called Gleevec. It was proving very successful in treating my disease, now identified as GIST (not leiomyosarcoma). Dr. von Mehren put me on 600mg daily and in a couple of months, I had a “complete response”— I was clear of GIST. Everybody— my doctors, I and my family were amazed and happy, to say the least. I continued on with the daily dose of Gleevec and took additional medications to deal with the gastric side effects, pervasive fatigue, uncontrollable muscle cramps and spasms, and other unpleasantries. So what? I was disease-free after all.
I continued regular follow-up visits over the succeeding years always with clear scans. At about three years, my regularly scheduled followup CT scan showed a new growth, measuring about 3cm, in the bottom of my pelvis to the right of my anus. Gleevec had stopped working.
Dr. von Mehren offered two options: Sutent or a clinical trial with AMN107 and Gleevec. After reviewing the possible side effects and comments online from various members regarding Sutent, I decided to try the clinical trial as the noted side effects seemed less offensive. Unfortunately, I was prevented from participating in the trial, as my dosage of Gleevec was below the requirement and they could make no exception regardless of my other qualifications. Dr. von Mehren increased my dosage of Gleevec to 800 mg but subsequent scans showed no positive results to the dosage increase and we continued looking for alternatives.
A couple of months later, a clinical trial combining a drug called RAD001 and 800 mg of Gleevec opened up. I was qualified, so I volunteered.
I became part of the Clinical Research Unit (CRU Lab), a special facility which exclusively manages patients participating in trials of drug studies. Monica Davey was the nurse managing my study and my point of contact for the trial.
At our first meeting, I received an appointment schedule, including tests I would have to take as part of the study and instructions regarding medication usage. All medications and tests as well as any professional charges were covered by Novartis, the study sponsor. I had to have a PET scan, CT scan, EKG and a lot of blood work prior to beginning the study. During the first two months, I had to visit the CRU every week for blood work and once a month for CT scans.
The CRU lab is a separate unit set up with its own reception area, individual areas for seven people and a nurse station with its’ own nursing staff who cares for only those patients. Each patient area has a reclining lounge chair, private TV, DVD and VCR players and there are two restrooms for patient use in the unit. There were times when I was the only patient there. It was actually quite calm, almost quiet there most of the time. I was given access to the wireless internet connection for the duration of the trial so I could do some work and check email while I was there. The accommodations were exceptional. I was encouraged to phone in with questions, concerns, and any observations whenever I wanted. Although I had to leave a voice message, the staff was excellent in returning calls in a timely fashion and I got used to the system quickly. Help was always available.
It wasn’t long after beginning the medication that I began to experience side effects. I found myself becoming tired easily but actually falling asleep was a challenge, so I began to use Ambien which occasionally helped. Then, my skin color turned an ashen hue and people began to mention I did not look well. My appetite declined and I lost weight. There were plenty of times I skipped meals and did not care. I experienced pain in my bowels, as well as bloody stool and diarrhea.
Diarrhea. Twenty four hours a day. Every day. For months. I began to take spare underwear and baby wipes in my car. It was unrelenting. There was no over-the-counter medication that could stop it. I ended up getting a script for Lonox, a powerful and tiny pill for my new, tormenting side effect. Exceeding the recommended dosage usually worked. I began to withdraw from normal activities as I was consumed with the threat of losing control of my bowels anywhere at any time, even sleeping. I slept on top of towels and wore double underwear. Enough was enough; so I told my doctor either we got this under control or I was dropping the study. Dr. von Mehren decided to cut all my dosages in half following a week off all drugs. That week was an incredible vacation! I had forgotten what life without medication was like and I liked it! The real world came crashing down a week later and I started on medications again. I only took the RAD001 every other day and 400 mg of Gleevec once a day. We got the diarrhea under tenuous control and I was able to continue on with life in some semblance of normalcy.
After three months, I trekked back to Fox Chase for my monthly CT scan to check on the tumor. I showed progression. The trial was not working for me and we had to abandon it and look to a new option. I felt somewhat empty and that the painful experiences of the last few months were a waste of time– time lost that the cancer had used to convalesce and grow. For a brief time, I was depressed but I told myself that I had to put that behind me. Get over it and move on. The options were few and another bad choice on my part was not going to be part of my plan for surviving. I had to trust that I had an excellent medical team working with me and a family who loves me and wants me around as long as possible. Even my coworkers were a constant source of encouragement. There was much to be grateful for in life despite the constant threat of losing to the disease. Life was good.
In her gentle way, Dr. von Mehren said we were going to move on to Sutent. We discussed the potential side effects, the same side effects that prompted me to try a different clinical trial all those months past. I found it interesting that now those same side effects did not sound so bad. While she was talking, I recall thinking to myself, “Okay Doc, let’s get it on!”
So here I am, several months down the Sutent trail (not a trial) and I am happy to report that my disease is stable. My side effects are the least and most tolerable to date since the recurrence in 2003. There has been no metastasis.
The Sutent will not work forever. I know that and have a backup plan in the works. I am aware of upcoming clinical trials at Fox Chase, and am also a patient at Memorial Sloan Kettering in New York. I have discussed upcoming clinical trials there with Dr. D’Adamo for which I may be a candidate in the event I need to make that move. And in the small world of GIST, Dr. von Mehren knows Dr. D’Adamo and supports my contingency plan.
Life, once again, is good.