Capitol Reef

Monday October 1 we did visit with Dr. Nibley to discuss the results of the MRI. He agreed with Dr. Hales that the small mass showing in my spine answered to the various symptomatic pains I have been having. He added that there was a risk that the mass could grow into the spine and impinge on the spinal cord, causing paralysis of the lower body. He was quite anxious that I receive radiation treatment to shrink the mass.

As to my main treatment he proposed two alternatives. One would be to drop the current Revlimid-Dex regimen in favor of carfilzomib, newly approved by the FDA. It is very much like the Velcade (bortezimib) that I previously received except it rarely causes neuropathy.

The other alternative would be to enter a clinical trial that Utah Cancer Specialists is a part of, and which is testing a new therapy in conjunction with Velcade. When I received Velcade last year it was effective in driving down the myeloma but caused severe, painful neuropathy. Since then a way of delivering Velcade has been found that reduces the incidence of neuropathy: an injection under the skin instead of intravenous, and once a week instead of twice a week.We'll decide between the alternatives when I return from Williamsburg.

For a long time I have been considering getting a second opinion, in which I have been strongly encouraged by my family and by my insurance company's "customer advocate".  Dr. Nibley seems to have a specific approach, but there are other approaches in the field. I have contacted the Huntsman Cancer Institute about getting that second opinion. The trouble is, based on the material I have received from them so far, Huntsman's approach may not be all that different from Dr. Nibley's. I have read about doctors in the east and on the west coast that have a different approach but there may not be anyone in the intermountain west that I can go to. I need to do more research.

Meanwhile Laraine and went camping this past week with my brother Steve and his wife Elaine. We spent three days and nights at Capital Reef National Park in southern Utah. We stayed at the Fruita campground, the only one in the park. It is so named because of the orchards in the area, planted by early settlers and still in operation today. We had a great time; the weather was perfect and the autumn leaves, especially the aspens, were glorious beyond description. I was sick with indigestion one day, but it wasn't too bad.

This past Monday we visited with Dr. Avizonis of IHC's radiation oncology group. She took the time to actually show us the MRIs and how the myeloma mass was pressing on my spine. She recommended ten daily treatments of radiation, to begin the Monday after we return from Williamsburg. In the meantime I deal with the nerve pain using pain meds and anti-inlfammatories, mostly at night to help me sleep.

Yesterday we caught our plane to Cleveland, and now here we are at David and Cicely's house in Shaker Heights, enjoying Miles, Faye, and Gwen! We'll all drive to Williamsburg on Saturday and meet up with the rest of our kids.