On Friday, November 30, I started a 21-day cycle for Velcade: an injection in the arm on days 1, 4, 8, and 11, and then a week off. That same Friday I started taking dexamethasone orally once a week, without a break. That's my therapy regimen; pretty simple.
We went to see Dr. Nielsen to review the results of the colonoscopy and the EGD. He showed us all the pictures and went over them in detail. He said there was nothing abnormal except a little inflammation in the stomach and duodenum, but since they do not cause any pain, we don't need to do anything about them for now. He showed where he had dilated my esophagus by a millimeter or two, using a little balloon that is built into the scope. I believe my swallowing has been a little easier since the procedure was done.
On Wednesday, December 5th, we had a big surprise and a little scare. Laraine had a small episode of incoherence and difficulty walking. It only lasted a few moments, but was worrisome enough that daughter Alyson and I took her to the Alta View Hospital emergency room. They ran all kinds of tests on her--the usual blood work, CT scan, MRI, and ultrasound of the heart. The tests results were mostly normal, but based on the episode Laraine experienced, the ER doc concluded she had had a small stroke. The tests did show that she may have had one or more mini/micro strokes at some time in the past. It was a long day at the ER, eight hours all together. At discharge, the recommendation was to follow up immediately with a neurologist.
On Thursday, Laraine contacted my mother's neurologist, or her stroke doctor, as she calls her, and arranged an appointment for the next day.The doctor was able to work Laraine in on short notice because it was considered an urgent situation.
On Friday we kept our 9:45 appointment with the neurologist, thinking it wouldn't last more than an hour. Well, we finally left at 5:00 pm! At 1:00 pm I took a break to go to Utah Cancer Specialists, less than a mile away, to get my Velcade shot and to pick up some lunch from Subway for both of us. Meanwhile, Dr. Futrell, who turned out to be fabulous, took a lot of time with us to explain all the tests and results from the ER at Alta View. She took more time to explain all about strokes and why she was proposing the approach she had in mind. Then she put Laraine through several tests: a physical exam, ultrasounds of her carotid arteries and both legs, another bubble test, and finally a holter monitor, which she has to wear for three weeks. It measures heart activity 24/7. The doctor said that Laraine had definitely had a TIA (Transient Ischemic Attack) or mini stroke.
Last Tuesday I received my final Velcade shot of this 21-day cycle. Friday I went in for a follow-up lab test to check my blood levels as usual and also my cancer markers. My platelets came back dangerously low, so I was signed up for two units of just platelets, which I received yesterday. My white blood cells and red blood cells, although still very low, were up slightly--a good sign. We have to wait for next week to get back the cancer markers.
12.16.2012
12.02.2012
Back on Treatment
By the beginning of Thanksgiving week we had become extremely concerned about my being off treatment for so long, by then a matter of weeks. We knew from the tests done at Huntsman that my counts were up dramatically, especially the IgA, headed for the territory that put me in the hospital when I was first diagnosed.
As I said last post, we had decided to go with the clinical trial, since two of the three medications--Velcade and dexamethasone--were the same ones I took when I was first diagnosed. They brought the cancer counts way down, and we hope they will do it again. There's a big difference, we hope, between last time and this time. As I explained in earlier posts, I had to go off Velcade before it had run its course because it caused such severe, painful neuropathy in my feet. This time they have found a different way to administer the Velcade, one that reduced the risk of neuropathy.
We were extremely anxious to get started with the trial, but everyone we needed was on vacation for the whole of Thanksgiving week and there was nothing we could do but wait. On the Monday morning following, I called Robbyn, the trial coordinator, first thing, and she jumped right on it, scheduling me for the remaining tests I had to take in order to qualify for the trial.
I called Dr. Ross's office that morning to get the results of the biopsy of the mole on my left leg, just above the knee. It was not malignant, but considered a possible mild threat that I should watch. Dr. Ross had excised most if not all of it, and will look at it carefully at our next meeting in May.
On this Monday I also started fasting and taking multiple laxatives in preparation for the next day's colonoscopy. If you've ever had one, you know what I'm talking about. If you haven't, the high point is drinking two quarts of a yukky solution within one hour, in the evening, and then doing it again the next morning.
The colonoscopy, along with the esophagogastroduodenoscopy (EGD), where a scope is used to look at the esophagus, the stomach, and the upper part of the small intestine, were done at LDS Hospital by Dr. Nielsen. The anesthesia they use now is much better than the one in the past, usually Versed. I didn't feel or remember a thing, and I wasn't drowsy when I woke up. One minute I was waiting for them to start, and the next minute I thought I was still waiting but it was all over. Dr. Nielsen said my colon looked great, as usual, but there were two issues with the EGD.
My esophagus was partially closed due to scarring, so Dr. Nielsen used a balloon that was on the scope to dilate the constricted part. He also found inflammation in my stomach,which he biopsied and said he would explain that later when I meet with him at his office.
As I said last post, we had decided to go with the clinical trial, since two of the three medications--Velcade and dexamethasone--were the same ones I took when I was first diagnosed. They brought the cancer counts way down, and we hope they will do it again. There's a big difference, we hope, between last time and this time. As I explained in earlier posts, I had to go off Velcade before it had run its course because it caused such severe, painful neuropathy in my feet. This time they have found a different way to administer the Velcade, one that reduced the risk of neuropathy.
We were extremely anxious to get started with the trial, but everyone we needed was on vacation for the whole of Thanksgiving week and there was nothing we could do but wait. On the Monday morning following, I called Robbyn, the trial coordinator, first thing, and she jumped right on it, scheduling me for the remaining tests I had to take in order to qualify for the trial.
I called Dr. Ross's office that morning to get the results of the biopsy of the mole on my left leg, just above the knee. It was not malignant, but considered a possible mild threat that I should watch. Dr. Ross had excised most if not all of it, and will look at it carefully at our next meeting in May.
On this Monday I also started fasting and taking multiple laxatives in preparation for the next day's colonoscopy. If you've ever had one, you know what I'm talking about. If you haven't, the high point is drinking two quarts of a yukky solution within one hour, in the evening, and then doing it again the next morning.
The colonoscopy, along with the esophagogastroduodenoscopy (EGD), where a scope is used to look at the esophagus, the stomach, and the upper part of the small intestine, were done at LDS Hospital by Dr. Nielsen. The anesthesia they use now is much better than the one in the past, usually Versed. I didn't feel or remember a thing, and I wasn't drowsy when I woke up. One minute I was waiting for them to start, and the next minute I thought I was still waiting but it was all over. Dr. Nielsen said my colon looked great, as usual, but there were two issues with the EGD.
My esophagus was partially closed due to scarring, so Dr. Nielsen used a balloon that was on the scope to dilate the constricted part. He also found inflammation in my stomach,which he biopsied and said he would explain that later when I meet with him at his office.
After a quick lunch at Paradise Bakery (one of my faves), we met with Robbyn at UCS to complete more tests for the
clinical trial. She did an EKG and the nurse drew thirteen vials of blood, a
record for me! She said she would try to get us on therapy by Friday, which
made us feel good.
We then met with Dr. Nibley, starting by telling him that some
members of the family, were angry with him, feeling that he
had not been aggressive enough in changing therapies when my counts went up. He
was not defensive, but explained that the timing of therapies relative to the
counts wasn’t as important as the response to a given therapy. In general, and
within reasonable limits, the end result will be the same if the counts are
lower or higher. He gave several other explanations, and in the end we felt
satisfied, and confident in Dr. Nibley.
The next day, Wednesday, we went to Utah Cancer Specialists' main office to get yet another bone marrow biopsy. The
physician assistant who performed it did an outstanding job, much better than
the others I have received, except perhaps the first. He was very quick, about
ten minutes altogether. We then went to St. Mark's Hospital, just up the street, for an x-ray skeletal survey. I was surprised how antiquated their equipment was, far clunkier than I had seen at LDS or Huntsman.
Thursday we went back to UCS to see Robbyn and she gave us the sad results of the blood tests from Tuesday. Both my red blood cells and white blood cells were extremely low, and as a result I was disqualified from the clinical trial, a serious disappointment. Robbyn had already conferred with Dr. Nibley and they wanted me to start our own course of therapy with Velcade and dexamethasone, two of the three drugs used in the trial and ones that I know can work for me because they worked in the past.
Now there is a better way to administer Velcade, by injection rather than IV, which is supposed to cut down on neuropathy. We'll see. Oh, and Dr. Nibley also prescribed two units of blood, which I received at Alta View Hospital the the next morning. That afternoon I met with Dr. McPherson to go over all my meds and renew some prescriptions.
Right now I feel pretty good. Fentanyl keeps the minor pains away and I know the Velcade is starting to work, and as it lowers the cancer I should feel better and better. Let's hope for that and be grateful for every single day!
Now there is a better way to administer Velcade, by injection rather than IV, which is supposed to cut down on neuropathy. We'll see. Oh, and Dr. Nibley also prescribed two units of blood, which I received at Alta View Hospital the the next morning. That afternoon I met with Dr. McPherson to go over all my meds and renew some prescriptions.
Right now I feel pretty good. Fentanyl keeps the minor pains away and I know the Velcade is starting to work, and as it lowers the cancer I should feel better and better. Let's hope for that and be grateful for every single day!
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.
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.
11.12.2012
Ouch!
Our last day at Williamsburg (Oct 19) featured great weather and great rides at the Busch Gardens amusement park. Next morning we were up at three (that's right - 3:00 am) and off to the airport. The trip home was uneventful and we found all well when we got there, but by Saturday evening the condition of my back had rapidly worsened. The strongest medicine I had (expired Lortabs) wasn't strong enough to get me a good night's sleep, or any sleep at all for that matter. I literally stood up all night because it was the only way I could get comfortable.
Sunday the back pain just got worse throughout the day so finally I talked to the weekend on-call doc at Utah Cancer Specialists, who said I should go to emergency. So, late that night Laraine took me to the ER at Intermountain Medical Center, where they did the usual blood tests and and a CT scan, neither of which revealed anything unexpected. They first gave me Percocet, which did nothing, but then gave an IV dose of Dilaudid, a concentrated form of a morphine, and that really hit the spot. I could feel its effect almost immediately, as the pain drained away completely.
I don't know what I was thinking at that point, but we decided to go home, armed only with a prescription for Percocet, which we already knew didn't work. Monday morning I saw Dr. Nibley to talk about cancer treatment alternatives, but he also gave me a prescription for a Fentanyl pain patch. I next saw Dr. Avizonas, a radiation doc, to schedule radiation treatments for the myeloma mass on my backbone, but she also gave me a prescription for oral Dilaudid to help with the pain.
Despite all the prescriptions I had, by Monday night the pain was at the top of the chart again, so I called the on-call doc again, and this time he admitted me straight into IMC as an inpatient. During my stay, which lasted until Wednesday afternoon, I met with several more doctors to figure out a pain management approach that I could use at home--one that didn't require an IV.
Meanwhile, on Tuesday, I did the first of ten daily radiation treatments there at IMC. The actual radiation lasts only a few seconds, and cannot be felt at all, but lying on the hard, flat table hits my nerves, or the myeloma mass, or something, in a way that causes excruciating pain, about an 8 or 9 on the pain scale. I just hope it all does some good.
So next, on Thursday, I consulted Dr. Jane McPherson, a pain specialist with the clinic, who I had met with last fall concerning neuropathy. She helped me consolidate the various prescriptions I had received during the past week into a single plan, upping the dose on a couple of them. With a little experimenting with timing and dosages I made it through the weekend, trading off pain for a drugged up feeling.
Friday we met with Dr. Zangari, head of the myeloma program at the Huntsman Cancer Institute, to consider getting a "formal" second opinion from him. We had somewhat conflicting aims: he wanted to do a full "staging"--two days of testing--before even discussing the matter. I just wanted to talk about his basic philosophy toward myeloma treatment before investing in the two days of treatment. To make matters worse I got quite nauseated while we were talking, and his staff had to give me IV anti-nausea and pain meds and hydrating solution. But after nearly two hours I think we came to a meeting of the minds. We're going to go ahead and start with the full staging as soon as we've completed the radiation treatments.
Sunday the back pain just got worse throughout the day so finally I talked to the weekend on-call doc at Utah Cancer Specialists, who said I should go to emergency. So, late that night Laraine took me to the ER at Intermountain Medical Center, where they did the usual blood tests and and a CT scan, neither of which revealed anything unexpected. They first gave me Percocet, which did nothing, but then gave an IV dose of Dilaudid, a concentrated form of a morphine, and that really hit the spot. I could feel its effect almost immediately, as the pain drained away completely.
I don't know what I was thinking at that point, but we decided to go home, armed only with a prescription for Percocet, which we already knew didn't work. Monday morning I saw Dr. Nibley to talk about cancer treatment alternatives, but he also gave me a prescription for a Fentanyl pain patch. I next saw Dr. Avizonas, a radiation doc, to schedule radiation treatments for the myeloma mass on my backbone, but she also gave me a prescription for oral Dilaudid to help with the pain.
Despite all the prescriptions I had, by Monday night the pain was at the top of the chart again, so I called the on-call doc again, and this time he admitted me straight into IMC as an inpatient. During my stay, which lasted until Wednesday afternoon, I met with several more doctors to figure out a pain management approach that I could use at home--one that didn't require an IV.
Meanwhile, on Tuesday, I did the first of ten daily radiation treatments there at IMC. The actual radiation lasts only a few seconds, and cannot be felt at all, but lying on the hard, flat table hits my nerves, or the myeloma mass, or something, in a way that causes excruciating pain, about an 8 or 9 on the pain scale. I just hope it all does some good.
So next, on Thursday, I consulted Dr. Jane McPherson, a pain specialist with the clinic, who I had met with last fall concerning neuropathy. She helped me consolidate the various prescriptions I had received during the past week into a single plan, upping the dose on a couple of them. With a little experimenting with timing and dosages I made it through the weekend, trading off pain for a drugged up feeling.
Friday we met with Dr. Zangari, head of the myeloma program at the Huntsman Cancer Institute, to consider getting a "formal" second opinion from him. We had somewhat conflicting aims: he wanted to do a full "staging"--two days of testing--before even discussing the matter. I just wanted to talk about his basic philosophy toward myeloma treatment before investing in the two days of treatment. To make matters worse I got quite nauseated while we were talking, and his staff had to give me IV anti-nausea and pain meds and hydrating solution. But after nearly two hours I think we came to a meeting of the minds. We're going to go ahead and start with the full staging as soon as we've completed the radiation treatments.
10.18.2012
Williamsburg
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.
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.
10.10.2012
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.
Subscribe to:
Posts (Atom)