Just a quick update to let you know all is well. We had a very pleasant stay with our son David and his family in Shaker Heights. Saturday we all drove to colonial Williamsburg in Virginia; the kids are great travelers, partly because their mom Cicely prepares lots of things for them to do in transit. Sunday we attended the Williamsburg Ward, where to our surprise, the main speaker was Brent Peterson, a former neighbor on Falcon Park Circle, who is now a clinical psychologist.
Here in the Williamsburg area, we have toured Colonial Williamsburg, the Colonial Parkway, Shirley Plantation (a still-working farm that dates to colonial times), and part of the Jamestown exhibit. In addition my son David and sons-in-law Brandon and David got in 18 holes on a beautiful course here at the Marriott.
Overall I have felt good. The golf gave me some serious sacroiliac pain, probably due to bone weakness from the cancer, plus my having not played for over four years. But a night's sleep and some strong medicine took care of that. I continue to have chronic pain in my side, ostensibly due to the myeloma mass on my backbone, and I will begin to get that zapped starting next Monday. I'll see you after that.
10.18.2012
10.10.2012
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.
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.
10.01.2012
The MRI
After returning from St. George, I underwent an MRI at Alta View Hospital, at the request of Dr. Hales. I was only able to complete two of three parts of the procedure because lying on my back made it hurt so bad I was twitching uncontrollably. I returned the next morning to complete the last procedure.
Meanwhile, a curious thing happened. Sometime during my stay in St. George the center of pain moved slightly but definitely from my back to my side. And then later on the day of the MRI, the pain subsided substantially on its own, to the extent I was able to stop taking pain medication. Whether it has helped or not, I have been taking it REALLY easy--lifting nothing and avoiding any kind of strain or effort. Sadly, I am getting very little done--some reading and working at my computer--and it's really frustrating. I have so many projects to get done, and so little time. You know how it is. I'm also not exercising, so I have a put on some weight, a lot in fact, and quickly!
Wednesday nights Laraine usually goes to as stake Relief Society presidency meeting (she is second counselor). To make it easier on her, and because it's as good an excuse as any, we go out to dinner on that night, usually for sushi. So for now, Wednesday night is sushi night. Woohoo!
Emily and I read the MRI report when it showed up on my IHC website, but we couldn't make much of it. When Dr. Hales called me on Thursday, he told me the MRI had shown a mass impinging on my spine that was likely caused by the myeloma and was likely causing the pain. He had already talked to Dr. Nibley and they had agreed that I should undergo radiation to try to shrink the mass in order to reduce the pain.
Laraine and I picked up a copy of the lab reports Dr. Nibley had ordered last week. The M-spike cancer marker was 0.3, lower than the 0.4 on the previous report but up from 0.2, where it had been since my transplant last November. The IgA marker was 742, up dramatically from the 416 measured in July. Anything above 400 is abnormal. It appears the myeloma is definitely coming back.
Friday one of Dr. Nibley's assistants called and referred me to the Radiation Oncology group of IHC, located downstairs from Utah Cancer Specialists at Intermountain Medical Center. At my request, she was also able to get my next appointment with Dr. Nibley moved up from the end of October to this Monday (today), in order to act quickly on my rising cancer markers.
Saturday I decided that since I apparently didn't have muscular damage or bone fractures, I would resume normal activities. I worked in the yard and went on a bike ride, both without any ill effects.
Meanwhile, a curious thing happened. Sometime during my stay in St. George the center of pain moved slightly but definitely from my back to my side. And then later on the day of the MRI, the pain subsided substantially on its own, to the extent I was able to stop taking pain medication. Whether it has helped or not, I have been taking it REALLY easy--lifting nothing and avoiding any kind of strain or effort. Sadly, I am getting very little done--some reading and working at my computer--and it's really frustrating. I have so many projects to get done, and so little time. You know how it is. I'm also not exercising, so I have a put on some weight, a lot in fact, and quickly!
Wednesday nights Laraine usually goes to as stake Relief Society presidency meeting (she is second counselor). To make it easier on her, and because it's as good an excuse as any, we go out to dinner on that night, usually for sushi. So for now, Wednesday night is sushi night. Woohoo!
Emily and I read the MRI report when it showed up on my IHC website, but we couldn't make much of it. When Dr. Hales called me on Thursday, he told me the MRI had shown a mass impinging on my spine that was likely caused by the myeloma and was likely causing the pain. He had already talked to Dr. Nibley and they had agreed that I should undergo radiation to try to shrink the mass in order to reduce the pain.
Laraine and I picked up a copy of the lab reports Dr. Nibley had ordered last week. The M-spike cancer marker was 0.3, lower than the 0.4 on the previous report but up from 0.2, where it had been since my transplant last November. The IgA marker was 742, up dramatically from the 416 measured in July. Anything above 400 is abnormal. It appears the myeloma is definitely coming back.
Friday one of Dr. Nibley's assistants called and referred me to the Radiation Oncology group of IHC, located downstairs from Utah Cancer Specialists at Intermountain Medical Center. At my request, she was also able to get my next appointment with Dr. Nibley moved up from the end of October to this Monday (today), in order to act quickly on my rising cancer markers.
Saturday I decided that since I apparently didn't have muscular damage or bone fractures, I would resume normal activities. I worked in the yard and went on a bike ride, both without any ill effects.
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