11.23.2012

Second Opinion

For some reason several paragraphs from my last post were deleted and lost. We finished the radiation treatments, although there turned out to be twelve daily treatments instead of ten. By the end my esophagus had been badly burned, an expected side effect since the mass being radiated was close by. I had to ramp up the pain meds again. I had a hard time getting food down and lost all the weight I had gained previously due to inactivity during the back pains.

Thursday, November 8, the day after the last radiation, we spent the day at Huntsman Cancer Institute getting staged--all the necessary baseline testing to prepare for potential treatment. The tests included a PET (positron emission tomography) scan, CT (computerized tomography) scan, blood tests (nine vials worth), bone marrow biopsy, MRI (magnetic resonance imaging), and turning in a 24-hour urine sample.

The next day we stopped by Utah Cancer Specialists to get my quarterly Zometa (bone medicine) treatment and see how the clinical trial qualification was coming. No news. On the way home we stopped to see the house that Alyson and Davey are buying, which seemed very nice--a great first home. Later we had an appointment with the gastroenterologist recommended by Dr. Hales, my primary care physician, whom I had seen Tuesday about my esophagus, which I think has problems beyond the radiation burns. Dr. Nielsen scheduled an endoscopy, and also a colonoscopy, which I am due for.

Tuesday the 13th, we met again with Dr. Zangari to review the test results and hear what treatment he proposed. Astonishingly, I was nauseous again that day and had to excuse myself. The only two times I have nausea in weeks and they're both when I see Dr. Zangari! Maybe he makes me nervous, or maybe it's a sign. Anyway, he proposed an immediate treatment of five chemo drugs to bring down my cancer markers, which have been moving up rapidly, followed after four weeks by another transplant, involving SEVEN chemo drugs. I guess the idea is to throw as many drugs as possible at the cancer simultaneously. I say "guess" because we're really not sure. Dr. Zangari was maddeningly short on explanations and details. When asked why this approach, he simply said, "This is what we do."

The next morning I received my semiannual skin checkup from my awesome dermatologist, Dr. Ross. He removed one small mole from my leg for biopsy. Following lunch with daughters Emily and Libby, Laraine and I picked up my mom, and my sisters Linda and Colleen and headed for Phoenix to attend the funeral of my aunt Lena Joyce Russell, who died of a heart attack at age 88. We stayed overnight at my brother Mike's house in St. George before completing the trip to Phoenix. The funeral weekend was both sad and joyous, typically LDS, lots of catching up with the Russell clan and others.

Monday I rode my bike for the first time in several weeks; my legs were extremely weak. Not only are they weak but I have trouble coordinating them. I fear that there may be some nerve damage from the myeloma mass that was radiated. Maybe the treatment was too little, too late.

Wednesday, November 21st, was the one-year anniversary of my stem cell transplant. Accordingly, I had a meeting with Dr. Finn Peterson, head of the transplant team at LDS Hospital, and with Greta Koontz, who was my coordinator. I had been anxious to meet with Dr. Peterson to get his view of my situation and options, and of the Huntsman approach. He had received the test results I had had sent from Huntsman.

The meeting was quite sober, and was in the way of conveying bad news. My cancer counts are up dramatically, and have been coming up for some time. It means that although the transplant at first appeared successful, it did not have a lasting impact, and is therefore considered not successful. Consequently, Dr. Peterson advised that a second transplant would not be any use. After reviewing the options, we have decided to go ahead with the clinical trial, and hope that this will bring the cancer down and give me at least a few months reprieve.

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