Autumn 2013
On The Stereo: Dear Old Friend: Patty Griffen
In My Blood: Clinical Trial Cocktail
Snow White asked "Can an apple a day keep the doctor away?" I don't think so.
Autumn brought us mixed medical messages. My scalp wound, as one might have expected, continued to show no improvement. Dr. Correnti cleaned my oozing head once more on Sept. 9th. As we approached our Oct 2nd. appointment at Moffitt Cancer Center, to address the required pathology, a new lump, likely an infected lymph node, manifested on the side of my neck. To most, this would be considered another setback. At least, to us, it appeared my melanoma had quickly returned and the probability of acceptance in the clinical trial might well be lost. As much as pathological results from a cancerous internal organ were a necessity for inclusion, I might now be considered too risky a subject patient.
We met with Dr. Jeffrey Weber, the man in command of the study. There was also a medical representative on site, whose function was to approve candidates and procedures to ensure there was no breach in the trial. That person also had oversight on behalf of Bristol Myers Squibb. The doctor was delighted that he could now remove and biopsy the lump. It would be a much straightforward and less dangerous operation than we had contemplated earlier. The other cancerous sites were sheltered and it would be awkward to perform an excision. A needle biopsy would not qualify, as the drug manufacturer required there be no doubt of the efficacy of their product or of the test procedures. We signed all the necessary papers. There were many. Lawyers had been involved. The operation was scheduled for the next day. We stayed overnight at Embassy Suites, on the campus. Kath and I both realized this trial was being conducted at an urgent pace. The timely nature of this nodular growth could be construed as a minor miracle. Or luck. Or just fortuitous. Your call. We were concerned about the precipitous options which were available to us. It had manifested when we needed a more advantageous site. We dined at a nearby Carraba's and drove back to our hotel, had a nightcap and wrestled with sleep.
I fasted in preparation for the neck surgery. Early that Oct. 3rd morning, Dr. Zager removed the golf ball-sized node. Post operation, he met with Kathy, who asked if he saw obvious signs of cancer. He had not, but four separate laboratories would analyze and report their findings to Dr. Weber, who would meet with us on the 11th, to review the pathologies and hopefully, plan our next steps. At that meeting, we were confirmed to the trial. The results corroborated the suspicion of metastatic cancer. Hard to believe that finding cancer would be good news.
And then it was Halloween eve.
With most of the rest of our world preparing for munchkins at the door, and planning their costumes for parties with friends, my bride and I made the almost three hour drive, again, to Tampa, and to what was becoming our northern home, the Embassy Suites. We arrived in time for dinner, followed by our requisite cocktails at the Embassy bar. We watched a little TV in bed, and once again, closed our eyes, unable to commit fully, to much-needed sleep.
At 8:30 the following morning, we checked into Moffitt's cutaneous clinic. It was our first real introduction to their cancer center. It did not take much time for us to realize how fortunate we were. Few of the patients displayed overt evidence of cancer. The greater number, however, clearly showed the horrible ravages they had endured. Faces were partially gone. Hats and scarves were commonplace. Eyes and limbs were gone. Many were unable to walk. This was cancer's home.
As shockingly gruesome and worn as many of these patients looked, few complaints were heard. There was quiet, as much as could be expected in a vey large, sterile, waiting room. There were hints of tears, of fear, and some embarrassment. Overriding all of this, were smiles, of knowing nods and an expected civility. These people had all converged on this place, bringing their hope and a gratitude that such a place even existed. This was our introduction.
The check-in process was thorough and fairly time consuming. I was not yet a regular patient. I was a first time candidate for a brand new clinical trial. Much information changed hands, and then we were led into the hospital's bowels. I was weighed, had my blood pressure checked and asked to walk around the hospital floor, prior to measuring my blood oxygen. I was asked if I would participate in an optional, additional trial, whereby a portion of my blood would be removed, studied, scrubbed, and then reintroduced, before the infusion. Of course I volunteered. How could I not. I was being given a chance at life. I wanted to help future cancer patients in any way I could. I lay on a bed and after three different nurses tried and failed at inserting blood lines into both arms, with a great deal of discomfort, we all conceded that portion of the process. It would not be offered again. Thank goodness for small mercies.
I was introduced to a number of nurses and staff, who were to become an important part of my life for the weeks and months to come. Once the infusion needle was inserted, Kath was invited to join me in a small cubicle where I relaxed in a recliner, was given water or juice to drink, and began receiving saline. Only when I reached this stage, did the hospital lab send the chemical solution to be added to the IV for my first infusion. The product must have been incredibly expensive as they took no chances that it would be wasted, if I had not been absolutely prepared for its delivery.
During my last visit with Dr. Weber, he had advised that there were two different drugs to be used in the trial. One was currently in use, with limited success, and the other was the new immunotherapy drug, identified only as nivolumab. Previous trials had already proven that a blend of these drugs did not work, and those trials had been abandoned. This trial would decide in which order the drugs would be taken and also the quantity required for success. It had not gone well for the last group, I thought. I guessed most would still be struggling along. At least I hoped so. Candidates, to qualify, had to have metasticised melanoma with a life expectancy of under a year. There were about eighty of us in two locations. I'm guessing they wanted younger, stronger people as well, to fight off side effects and survive the treatments themselves. Kath believed me to be one of the oldest. That would have made me the wily veteran, I suppose. I did not think that Kath was trying to be complimentary. Maybe funny, though. She knew we needed to laugh. Those prior months of dealing with an energized cancer, changing doctors, and trying to regain my health after my AVM, had taken a toll on our lives.
Nivolumab was an antibody (a type of human protein) that was being tested to see if it would allow the body's immune system to work against tumor cells. By that time, to fight against cancer, we had tried every new drug available, without success. Each time, we were encouraged to hang on, not to give up, and wait for something good to happen. Research would provide an answer. Each time we endured chemotherapy, we were, in fact, given a little more time. But the ongoing surgeries, radiation treatments and chemo, had been ripping apart my internal systems and strangling my will to live.
This study was intended to test the safety, tolerability and effectiveness of dosing with both ipilimumab (Yervoy), a drug approved by the Food and Drug Administration, and nivolumab, a non-approved drug. There were no promises made, but every single person involved in carrying out the study, was enthusiastic and hopeful. We were warned that there may well be some severe side effects which were already known, and the possibility of new problems, given that these two drugs had not been used in this manner before.
If this was to be our last lifeline, what choice was there? All of our previous chemo treatments had made me incredibly sick and had caused irreparable damage to my internal systems. I had endured severe stomach pains, constipation, diarrhea and vomiting. I had lost my sense of taste. My testosterone manufacturing had been compromised and my esophagus had been stripped, leaving me with attacks of indigestion. This could not be worse.
It was October 31, 2013 - Halloween. Trick or Treat.
Some happier Halloweens.
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