I did make it home on Sunday the 9th, after three and a half weeks at Huntsman Hospital. Of course, it's great to be here. I told the hospital staff that despite their great care, I really needed to be home to get well. And I am getting well.
Progress is slow, which is to be expected, although I am doing much better than after my first transplant, when I stayed in bed or on the couch in front of the TV for close to a month after coming home. I have been able to walk around the nearby park every day and to do a few light chores and projects around the house. Early on I had to stop and rest every few minutes from any physical activity that I was doing.
In my last post I talked about heart arrhythmias, and that's what has been holding me back. The slightest over-exertion causes one to kick in, sometimes making my heart beat too fast, other times too slow. Sometimes they were very debilitating, causing a great feeling of weakness, and the need to lie down before I fell down.
This Wednesday I went to see the University of Utah Hospital cardiologist assigned to me, Dr. Shean. He said I still had fluid around my heart (lingering pericarditis), but not enough to bother me, and that aside from the arrhythmias, my heart is fine. As to those, he proposed to do nothing at this time, and see if I can get well on my own, which approach I like. Otherwise the next steps are heart medicine and a pacemaker.
And I think I am getting better. This past week I have been able to walk faster and work harder and longer, with fewer and fewer episodes of arrhythmia. I even did a set of weights and ten sets of stairs. I did get arrhythmias but they were light and over quickly, and felt almost as if I could control them.
After the cardiologist, I went to see my oncologist, Dr. Zangari to find out how effective the transplant had been at reducing or eradicating the cancer. The good news is that, at least right now, I am in remission--cancer free. The tests could find no evidence of the disease in my body. The bad news is, and always has been, that the myeloma will come back. It always does. Because of this, and because I have high risk factors, I will go on maintenance chemo right away.
We were highly disappointed to learn that Dr. Zangari will be leaving Huntsman at the end of July to take a position at the Myeloma Institute for Research and Therapy in Arkansas. He is the main reason we came to Huntsman. We are quite anxious about who our oncologist will be, and if they really are a myeloma expert who can give me individualized help.
One last thing: I took a bad fall. We were leaving the hospital last Monday and I was texting while walking in the parking lot and fell over a concrete barrier. Both hands were full and I went down hard, scraping an ankle, both knees, a forearm, a hip, a shoulder, and my head. Fortunately, we were at the hospital, so we went back up the clinic and they fixed me right up, after a CT scan showed my head was OK and a transfusion of platelets to insure I didn't bleed out internally. I'm pretty scarred up, but there's no permanent damage.
So, we are settling into another "new normal" and life is good. Sometime in the future the myeloma will be back, but not today. Today belongs to us and we're making the best of it.
6.22.2013
6.08.2013
Almost There
It is 11 days since my last post and I'm happy to tell you I am much improved. I am out of that dark place I was in and almost back to normal. This is day +19 since my transplant and I am still here in Huntsman Cancer Hospital, although I just received news that I will be going home tomorrow.
I might normally have been home by now but for two reasons. First, I developed a common reaction called engraftment syndrome where the body overreacts to the re-implanted stem cells. The syndrome's two symptoms are fever and rash. They've kept me here to treat the rash and to make sure the fever I had doesn't come from a new bacterial or viral infection, rather than from the syndrome.
The other reason I'm still here is that I have engrafted quite slowly, that is, my re-implanted cells have been slow to take hold and start regrowing. This can be common with second transplants, like I'm going through, but it also could just be my own individual health and genetic make up. Nevertheless, my cells finally kicked in and are growing leaps and bounds.
Aside from my slow stem cells, I have progressed normally. I am eating and drinking enough and my vital signs are staying within acceptable ranges, although there is some concern about my heart. Being a runner and a biker I never thought I would have heart issues, but during the last two years either the cancer or the treatments have caused some problems. My heart is still strong; the issues are with the electrical system and the timing of heart beats (arrhythmia). My pulse can range--within a few hours--from the low 40's to the 130's with no apparent reason, without my doing anything. It's not dangerous at this point but the U of U cardiologists will continue to watch me, and perhaps suggest some ongoing maintenance treatment.
Hospital life is never desirable, but the staff here at Huntsman have been just wonderful at trying to make my time here as pleasant as possible. They have worked hard at filling my every need, watching over me, being cheerful and encouraging, and always acting very professionally. I owe them a lot.
My goal now is to go home and regain the strength I have lost by being cooped up here is this one room for over three weeks. Hopefully that's where my next post will be from--HOME! Deep and sincere thanks again to all who have visited, called, prayed, and otherwise supported and encouraged me. I love you all so much.
I might normally have been home by now but for two reasons. First, I developed a common reaction called engraftment syndrome where the body overreacts to the re-implanted stem cells. The syndrome's two symptoms are fever and rash. They've kept me here to treat the rash and to make sure the fever I had doesn't come from a new bacterial or viral infection, rather than from the syndrome.
The other reason I'm still here is that I have engrafted quite slowly, that is, my re-implanted cells have been slow to take hold and start regrowing. This can be common with second transplants, like I'm going through, but it also could just be my own individual health and genetic make up. Nevertheless, my cells finally kicked in and are growing leaps and bounds.
Aside from my slow stem cells, I have progressed normally. I am eating and drinking enough and my vital signs are staying within acceptable ranges, although there is some concern about my heart. Being a runner and a biker I never thought I would have heart issues, but during the last two years either the cancer or the treatments have caused some problems. My heart is still strong; the issues are with the electrical system and the timing of heart beats (arrhythmia). My pulse can range--within a few hours--from the low 40's to the 130's with no apparent reason, without my doing anything. It's not dangerous at this point but the U of U cardiologists will continue to watch me, and perhaps suggest some ongoing maintenance treatment.
Hospital life is never desirable, but the staff here at Huntsman have been just wonderful at trying to make my time here as pleasant as possible. They have worked hard at filling my every need, watching over me, being cheerful and encouraging, and always acting very professionally. I owe them a lot.
My goal now is to go home and regain the strength I have lost by being cooped up here is this one room for over three weeks. Hopefully that's where my next post will be from--HOME! Deep and sincere thanks again to all who have visited, called, prayed, and otherwise supported and encouraged me. I love you all so much.
5.28.2013
In The Thick of It
I am on day +8 since receiving my stem cells. The first few days were tolerable, but now I am in the thick of it. I have asked Laraine to type this for me since my energy and general well being are pretty low. They have started me on a couple different antibiotics to stop some bacterial infections that started. I am on a regular schedule of anti-nausea medications, one of which makes me quite sleepy. I am now experiencing the worst of the worst when you think of a transplant situation. My days have a sort of "zombie like" feel to them. I have lost track of which day it is. At this point I can't keep any food down, so I am on a fluid IV and also a nutrition IV. This is all quite normal and to be expected. My white blood cell count is 0.02, so I have no immune system to speak of. Hopefully within the next few days that count will make its way back up and I will start to feel better.
Thank you for all of your visits and concerns. I so appreciate all the prayers and love that have been sent my way. I will keep you posted on how the next few days go.
Thank you for all of your visits and concerns. I so appreciate all the prayers and love that have been sent my way. I will keep you posted on how the next few days go.
5.17.2013
An Update to Our Continuing Journey
It's been four
months since my last post. Obviously, I was not born to be a blogger.
Nevertheless, here's a quick update to what has happened since last
January.
The Velcade I began in November was effective at first but soon the cancer counts started to go back up. After a few weeks it was clear the Velcade was not working any more so Dr. Nibley decided to try a new drug approved last year by the FDA, which is a newer version of Velcade, one which does not cause neuropathy. I started on carfilzomib--trade name Kyprolis--around the middle of February until the end of March. Happily, the cancer counts started to go back down, although they had reached a very high level by the time we started on Kyprolis and had a long way to go to get down to safe levels.
At this point we arrived at a decision we had thought about for a long time. Feeling we needed a more aggressive approach, we switched our oncology care to Huntsman Cancer Institute and Dr. Maurizio Zangari, who specializes in multiple myeloma.
After initial testing, they immediately began the process for a second stem cell transplant. I had a central line surgically inserted in my chest on April 2nd and on April 3rd entered Huntsman Cancer Hospital for the initial "D-PACE" chemotherapy regimen. That's an acronym for five different chemicals, which I received intravenously around the clock for four days. I tolerated the treatment fairly well; the nausea was minimal but as expected I became physically weak and also neutropenic (no immune system).
After the D-PACE I had a couple of episodes in the ER and a night in ICU. I was having some heart arrhythmias and also had developed pericarditis, which is an inflammation of the sac that's around the heart. I also had a fever very briefly, but every fever has to be responded to. I was given a Holter monitor to wear for 30 days and was prescribed a daily baby aspirin. Because the aspirin works as a blood thinner, I had to maintain my platelets at a level of 50 or higher. So that meant I had to have transfusions of blood and platelets every few days for a while. I also had to be given IV antibiotics for a week for a possible infection.
After the D-PACE it took me a little longer than expected to "engraft" and start making my own white cells again. So Dr. Zangari gave me a couple extra weeks to get my levels back up and gain some strength before heading into the actual stem cell transplant procedure. He hadn't got a final report from the cardiologists about my heart, but based on preliminary data got an OK to proceed with the transplant.
Today is Friday, May 17th and I am in Huntsman Cancer Hospital once again. Yesterday I was admitted and received my first round of chemotherapy, which included Melphalan, Velcade, Dexamethasone and Thalidomide. I chewed on ice chips for 30 minutes before, during and 30 minutes after receiving the Melphalan, which is supposed to help decrease the mouth sores. It worked last time and hopefully will this time too. Today I receive only Dexamethasone and Thalidomide. So far I have had no nausea, but it will probably come in the next day or two. I am wearing a heart telemetry monitor, which I will probably wear through my whole stay here. Last night I had heart rate readings as high as 130 and as low as 40. Each time someone woke me to make sure I was OK, although there's not much they can do until after the transplant, when they might consider beta blockers or a pacemaker.
Well, this will be my home for about three and a half weeks. Huntsman usually does this as an outpatient procedure, but because of my heart and other issues I will be inpatient the whole time. Wish me luck! I will try to do a better job of keeping you updated.
The Velcade I began in November was effective at first but soon the cancer counts started to go back up. After a few weeks it was clear the Velcade was not working any more so Dr. Nibley decided to try a new drug approved last year by the FDA, which is a newer version of Velcade, one which does not cause neuropathy. I started on carfilzomib--trade name Kyprolis--around the middle of February until the end of March. Happily, the cancer counts started to go back down, although they had reached a very high level by the time we started on Kyprolis and had a long way to go to get down to safe levels.
At this point we arrived at a decision we had thought about for a long time. Feeling we needed a more aggressive approach, we switched our oncology care to Huntsman Cancer Institute and Dr. Maurizio Zangari, who specializes in multiple myeloma.
After initial testing, they immediately began the process for a second stem cell transplant. I had a central line surgically inserted in my chest on April 2nd and on April 3rd entered Huntsman Cancer Hospital for the initial "D-PACE" chemotherapy regimen. That's an acronym for five different chemicals, which I received intravenously around the clock for four days. I tolerated the treatment fairly well; the nausea was minimal but as expected I became physically weak and also neutropenic (no immune system).
After the D-PACE I had a couple of episodes in the ER and a night in ICU. I was having some heart arrhythmias and also had developed pericarditis, which is an inflammation of the sac that's around the heart. I also had a fever very briefly, but every fever has to be responded to. I was given a Holter monitor to wear for 30 days and was prescribed a daily baby aspirin. Because the aspirin works as a blood thinner, I had to maintain my platelets at a level of 50 or higher. So that meant I had to have transfusions of blood and platelets every few days for a while. I also had to be given IV antibiotics for a week for a possible infection.
After the D-PACE it took me a little longer than expected to "engraft" and start making my own white cells again. So Dr. Zangari gave me a couple extra weeks to get my levels back up and gain some strength before heading into the actual stem cell transplant procedure. He hadn't got a final report from the cardiologists about my heart, but based on preliminary data got an OK to proceed with the transplant.
Today is Friday, May 17th and I am in Huntsman Cancer Hospital once again. Yesterday I was admitted and received my first round of chemotherapy, which included Melphalan, Velcade, Dexamethasone and Thalidomide. I chewed on ice chips for 30 minutes before, during and 30 minutes after receiving the Melphalan, which is supposed to help decrease the mouth sores. It worked last time and hopefully will this time too. Today I receive only Dexamethasone and Thalidomide. So far I have had no nausea, but it will probably come in the next day or two. I am wearing a heart telemetry monitor, which I will probably wear through my whole stay here. Last night I had heart rate readings as high as 130 and as low as 40. Each time someone woke me to make sure I was OK, although there's not much they can do until after the transplant, when they might consider beta blockers or a pacemaker.
Well, this will be my home for about three and a half weeks. Huntsman usually does this as an outpatient procedure, but because of my heart and other issues I will be inpatient the whole time. Wish me luck! I will try to do a better job of keeping you updated.
1.16.2013
A Bad Scare
The last two weeks had been pretty routine. I continued to get the Velcade shots each Friday. On Friday the fourth, my platelet counts were low enough that I had to get two units of them transfused the next day, but that was no big deal. That's happened before.
I broke one of my crowns and had to go twice to my dentist (awesome dentist by the way). We celebrated New Year's and my sixty-seventh birthday. A special thanks to all those who sent written remembrances of me; my daughters presented them all to me on the night of January second. I was so touched; I believe it was my best birthday ever.
But last Wednesday a nurse from Utah Cancer Specialists called with the lab results from the prior Friday. There are two key measures, or markers, for the myeloma, and they had last been measured on Friday, December 14. One, M-spike, had stayed level at 0.3, but the other, IgA, went up nearly 1,000 points from 3,258 to 4,220, a 30% increase in three weeks! Laraine and I and my family were devastated! We had expected the opposite since starting the Velcade shots, because Velcade worked so well for me when I was first diagnosed and treated with it. I only had to stop using it because of the neuropathy it caused in my feet.
Aside from being really sad about the news, I was a little bit panicked because I had thought I had more time to "put my house in order". Also, when I did various things, I said to myself, "This is probably the last time I will do this." It was depressing. I tried to make the best of the situation, but there was a cloud of gloom hanging over us. Nevertheless, Laraine and I prayed hard there could somehow be a different result.
Last Friday, when we went into the clinic for my weekly Velcade shot, the first thing I did was ask for a printout of the last week's test results, since the cancer markers had been given to me over the phone, and I had wanted to make sure the nurse hadn't made a mistake. Well, she hadn't and she had.
The printout always contains a column for each of the last ten tests, with the date for each test printed at the top of the column. On this printout, the last column had a date of January 8, a day on which I had not come into the clinic for a test. It also contained results for two tests that I never take. Finally, all the numbers in this column were so far out, that they couldn't possibly be mine. This column was bogus! But it was the one that had the IgA count of 4,220 and which the nurse had read to me.
More important, the column just before the bogus one carried the date of January 4, which was the correct date of my last test. Thankfully, the IgA count in this column was 1,669, down 1,551 points from the last test, a 52% decrease! This is exactly what we should have expected from the Velcade. You can imagine how happy we were! It was such a pleasure to communicate this discovery to all of our children and other loved ones.
We don't know why the bad data got onto my report; Dr. Nibley is checking it out. But it was probably someone else's information, manually entered into the system under my name, by mistake.
We had some other good news too! Laraine went to see Dr. Futrell, to get the results of the three-week heart monitor that she wore, and to undergo another ultrasound of her heart, this time administered via a tube down her throat, to get a picture from the inside. The result of all this is that Laraine will not need any corrective surgery, either to close the hole in her heart, which turned out to be very small, or to her carotid arteries. All she needs to do is take a statin drug, although so far the one she is taking makes her sick. We'll have to revisit that.
As of right now we and some of our kids are enjoying sunny Newport Beach, California for a week. It was quite chilly at first but is warming up nicely.
I broke one of my crowns and had to go twice to my dentist (awesome dentist by the way). We celebrated New Year's and my sixty-seventh birthday. A special thanks to all those who sent written remembrances of me; my daughters presented them all to me on the night of January second. I was so touched; I believe it was my best birthday ever.
But last Wednesday a nurse from Utah Cancer Specialists called with the lab results from the prior Friday. There are two key measures, or markers, for the myeloma, and they had last been measured on Friday, December 14. One, M-spike, had stayed level at 0.3, but the other, IgA, went up nearly 1,000 points from 3,258 to 4,220, a 30% increase in three weeks! Laraine and I and my family were devastated! We had expected the opposite since starting the Velcade shots, because Velcade worked so well for me when I was first diagnosed and treated with it. I only had to stop using it because of the neuropathy it caused in my feet.
Aside from being really sad about the news, I was a little bit panicked because I had thought I had more time to "put my house in order". Also, when I did various things, I said to myself, "This is probably the last time I will do this." It was depressing. I tried to make the best of the situation, but there was a cloud of gloom hanging over us. Nevertheless, Laraine and I prayed hard there could somehow be a different result.
Last Friday, when we went into the clinic for my weekly Velcade shot, the first thing I did was ask for a printout of the last week's test results, since the cancer markers had been given to me over the phone, and I had wanted to make sure the nurse hadn't made a mistake. Well, she hadn't and she had.
The printout always contains a column for each of the last ten tests, with the date for each test printed at the top of the column. On this printout, the last column had a date of January 8, a day on which I had not come into the clinic for a test. It also contained results for two tests that I never take. Finally, all the numbers in this column were so far out, that they couldn't possibly be mine. This column was bogus! But it was the one that had the IgA count of 4,220 and which the nurse had read to me.
More important, the column just before the bogus one carried the date of January 4, which was the correct date of my last test. Thankfully, the IgA count in this column was 1,669, down 1,551 points from the last test, a 52% decrease! This is exactly what we should have expected from the Velcade. You can imagine how happy we were! It was such a pleasure to communicate this discovery to all of our children and other loved ones.
We don't know why the bad data got onto my report; Dr. Nibley is checking it out. But it was probably someone else's information, manually entered into the system under my name, by mistake.
We had some other good news too! Laraine went to see Dr. Futrell, to get the results of the three-week heart monitor that she wore, and to undergo another ultrasound of her heart, this time administered via a tube down her throat, to get a picture from the inside. The result of all this is that Laraine will not need any corrective surgery, either to close the hole in her heart, which turned out to be very small, or to her carotid arteries. All she needs to do is take a statin drug, although so far the one she is taking makes her sick. We'll have to revisit that.
As of right now we and some of our kids are enjoying sunny Newport Beach, California for a week. It was quite chilly at first but is warming up nicely.
12.30.2012
Just Another Week
This week was pretty quiet on the medical front. I received my weekly Velcade shot. The shots leave a good-sized bruise, so I move them around each week. This one was in the stomach area. My blood counts were mixed: white cells up, red cells down, but all of them in very low territory.
I feel pretty good, though generally weak and tired. I'm able to work out on the treadmill every day and work on my home improvement projects. Sometimes I need a nap during the day.
This is Laraine's last week wearing the heart monitor, which has been a real challenge. We hope it's worth it; we got a bill for it, and our copay was nearly a thousand dollars! But that can't be right; we're going to check it out.
I feel pretty good, though generally weak and tired. I'm able to work out on the treadmill every day and work on my home improvement projects. Sometimes I need a nap during the day.
This is Laraine's last week wearing the heart monitor, which has been a real challenge. We hope it's worth it; we got a bill for it, and our copay was nearly a thousand dollars! But that can't be right; we're going to check it out.
12.23.2012
Radiation Follow Up
Monday I had a follow-up visit with Dr. Avizonas, my radiation oncologist. I said I felt well, with no remaining back pain. She did a physical exam and pronounced me well. However, when I did mention the weak wobbly feeling in my legs, which began about the time of the radiation, she ordered an MRI, just to be sure about the radiation's effect on the mass on my backbone.
I received the MRI the next day at Alta View Hospital, near our house in Sandy. On Wednesday, Dr. Avizonas called to report that the MRI showed the mass had shrunken considerably and was no longer impinging on the spinal cord, so there must be some other cause for my weak wobbly legs.
During the week Laraine and I also listened to a web broadcast that summarized the proceedings of the American Society of Hematologists, or ASH, which focused on Multiple Myeloma. Our general impression was that there is incremental progress being made in extending progression-free survival (the disease is not getting worse) and overall survival (the patient didn't die), but no real breakthroughs. There was not any particularly good news for high risk patients like me.
Friday Laraine and I met with my oncologist Dr. Nibley. My blood was tested and my counts were all up, so I didn't need to receive any transfusions. We reviewed the cancer counts from the previous Friday. One of them, the M-spike, was down a tenth at .3, but the other one, IgA, was 3258, up about a thousand from when it was last measured about six weeks ago. But it was probably down from when I began the Velcade treatments, which we neglected to measure at that time.
Dr. Nibley decided to drop the 21-day Velcade cycle and switch to once a week, which studies have proven is just as effective as twice a week. I received my first weekly Velcade shot, and we'll measure the counts in another three weeks.
Meanwhile, I'm feeling pretty good, gradually ramping up my exercise program and getting some projects done around the house.
Laraine didn't have any stroke-related appointments this week, but she is still wearing the heart monitor, which involves four contacts stuck on her torso, an electronic device which the contacts are connected to and which is carried around her neck by a strap, and a dedicated cell phone strapped to her waist, which relays the data to some central computer somewhere. The whole arrangement is driving her crazy.
I received the MRI the next day at Alta View Hospital, near our house in Sandy. On Wednesday, Dr. Avizonas called to report that the MRI showed the mass had shrunken considerably and was no longer impinging on the spinal cord, so there must be some other cause for my weak wobbly legs.
During the week Laraine and I also listened to a web broadcast that summarized the proceedings of the American Society of Hematologists, or ASH, which focused on Multiple Myeloma. Our general impression was that there is incremental progress being made in extending progression-free survival (the disease is not getting worse) and overall survival (the patient didn't die), but no real breakthroughs. There was not any particularly good news for high risk patients like me.
Friday Laraine and I met with my oncologist Dr. Nibley. My blood was tested and my counts were all up, so I didn't need to receive any transfusions. We reviewed the cancer counts from the previous Friday. One of them, the M-spike, was down a tenth at .3, but the other one, IgA, was 3258, up about a thousand from when it was last measured about six weeks ago. But it was probably down from when I began the Velcade treatments, which we neglected to measure at that time.
Dr. Nibley decided to drop the 21-day Velcade cycle and switch to once a week, which studies have proven is just as effective as twice a week. I received my first weekly Velcade shot, and we'll measure the counts in another three weeks.
Meanwhile, I'm feeling pretty good, gradually ramping up my exercise program and getting some projects done around the house.
Laraine didn't have any stroke-related appointments this week, but she is still wearing the heart monitor, which involves four contacts stuck on her torso, an electronic device which the contacts are connected to and which is carried around her neck by a strap, and a dedicated cell phone strapped to her waist, which relays the data to some central computer somewhere. The whole arrangement is driving her crazy.
12.16.2012
Laraine's Turn
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.
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.
12.02.2012
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.
9.24.2012
Troubling News
The week started and ended well but there was a tough spot in the middle. It began with lunch at the Ho Ho Gourmet with a great bunch of guys I used to work with: Matt Augustine, Gary Lee, Ryan Anderson, and Jared Penrod. We get together about once a month; Dave Moore usually joins us but couldn't make it this time.
Then Laraine and I had a great dinner with my brother Steve and his wife Elaine at the Water Moon in Draper (it must be Chinese week). We planned a camping trip for the week after next down at Capitol Reef National Park.
Thursday was the hard day. We met with my oncologist, William Nibley, and the news was not good. One of the two cancer markers we follow, the M-spike, had gone up to 0.4 after having been level at 0.2 since my transplant last November. The other marker, IgA, was inadvertently not processed by the lab, but I have no doubt it has gone up too. Unlike the M-spike, the IgA has been climbing steadily since the transplant. This means I will probably be switching to a new drug regimen. Dr. Nibley ordered more tests to confirm the M-spike result and pick up the IgA count that was missed, and then we'll meet and re-evaluate in a month.
In addition, my red and white blood counts were down even further. This is caused by the Revlimid drug that I take, even though I had been off it for a week. I do a cycle of 21 days on and 7 days off. The lowered red count makes me anemic and the lowered white count weakens my immune system.
Things got better after that as Laraine, and Libby and her two boys Sam and Max, and I headed for St. George, where we are staying with my brother Mike and his wife Jan. Friday we all took a nice walk on the pathway along the Virgin River. Saturday Mike and I enjoyed a bike ride on the road that leads to Zion National Park, ending up in Springdale, where the rest of the gang met us for dinner at Oscar's. Try it if you're ever in the neighborhood.
Yesterday after the Brigham City Temple dedication, Mike and Jan had a barbecue for other family and friends that are visiting or live here in St. George. Our youngest Aly was down with her husband and some of his family. Also here was my sister Suzanne, her son Brian and his family, and my brother Steve's son Nathaniel and his family--all St. George residents. We had a great evening.
I continue to be plagued with pain in my back, or at least in my ribs. When it first started a few weeks ago, the doctors thought it was a spinal problem, but after reviewing all my past x-ray reports, I think the problem may be in my ribs, perhaps from fractures I've had since getting cancer--ones I didn't even know about because I hadn't read the reports carefully. When we return home to Sandy I will get back together with my primary care doc, Reid Hales, to try to figure it out. It's really been slowing me down.
Then Laraine and I had a great dinner with my brother Steve and his wife Elaine at the Water Moon in Draper (it must be Chinese week). We planned a camping trip for the week after next down at Capitol Reef National Park.
Thursday was the hard day. We met with my oncologist, William Nibley, and the news was not good. One of the two cancer markers we follow, the M-spike, had gone up to 0.4 after having been level at 0.2 since my transplant last November. The other marker, IgA, was inadvertently not processed by the lab, but I have no doubt it has gone up too. Unlike the M-spike, the IgA has been climbing steadily since the transplant. This means I will probably be switching to a new drug regimen. Dr. Nibley ordered more tests to confirm the M-spike result and pick up the IgA count that was missed, and then we'll meet and re-evaluate in a month.
In addition, my red and white blood counts were down even further. This is caused by the Revlimid drug that I take, even though I had been off it for a week. I do a cycle of 21 days on and 7 days off. The lowered red count makes me anemic and the lowered white count weakens my immune system.
Things got better after that as Laraine, and Libby and her two boys Sam and Max, and I headed for St. George, where we are staying with my brother Mike and his wife Jan. Friday we all took a nice walk on the pathway along the Virgin River. Saturday Mike and I enjoyed a bike ride on the road that leads to Zion National Park, ending up in Springdale, where the rest of the gang met us for dinner at Oscar's. Try it if you're ever in the neighborhood.
Yesterday after the Brigham City Temple dedication, Mike and Jan had a barbecue for other family and friends that are visiting or live here in St. George. Our youngest Aly was down with her husband and some of his family. Also here was my sister Suzanne, her son Brian and his family, and my brother Steve's son Nathaniel and his family--all St. George residents. We had a great evening.
I continue to be plagued with pain in my back, or at least in my ribs. When it first started a few weeks ago, the doctors thought it was a spinal problem, but after reviewing all my past x-ray reports, I think the problem may be in my ribs, perhaps from fractures I've had since getting cancer--ones I didn't even know about because I hadn't read the reports carefully. When we return home to Sandy I will get back together with my primary care doc, Reid Hales, to try to figure it out. It's really been slowing me down.
9.17.2012
Lots of testing this week. Dr. Hales, my primary care physician, had me get a CT scan on Thursday, to try to figure out what was causing the pain in my back. Then Friday morning I underwent what is called a skeletal survey, about thirty-odd x-rays of my entire skeleton. This had been ordered by my oncologist, Dr. Nibley, who is also concerned about my back, but also wanted to know if there was any increase in cancer-related damage to my bones. While I was in the clinic, I also got my regular blood tests, and my quarterly infusion of Zometa, an osteoporosis medicine to strengthen my bones.
The result of the CT scan and the skeletal survey is that there was nothing to indicate any source of the pain in my back. I have a little degeneration in the spine, probably due to my age. I also found out I had two fractures that I didn't know about, in one of my ribs and in my pelvis. Both apparently are healed. My guess is that they were caused partly by the damage to my bones from the myeloma, but I have no idea when I got them.
The blood work showed that, as usual, the Revlimid therapy I take has suppressed my immune system, and depleted my red blood cells, perpetuating my anemia. I am off Revlimid this week, which is part of my regimen: 21 days on and 7 days off. I will meet with Dr. Nibley this week to decide what to do differently, if anything. As far as the cancer markers, which indicate how active the cancer is, that test has to be sent out to another lab, so I won't get those results for a day or two.
Every Friday morning I take dexamethasone, a steroid that is part of my cancer treatment regimen. I noticed two Fridays ago that I had no back pain all that day, after taking the "dex", but the pain returned part way through the next day. This last Friday, however, the pain went away and never came back. So I'm guessing the dex has somehow cured the cause of the pain, or at least masked the pain. Either way, I am really grateful. The pain was very debilitating; it gave me real empathy and compassion for those who suffer chronic back pain.
I just got a great call from my good friend Lee Taylor, from my graduating class at Springville High. Lee looks after all of us and keeps the class together, a "calling" he selflessly took upon himself years ago and has carried out faithfully ever since. He travels widely and always makes a point of visiting any class member who happens to be in his path. He's a great guy.
I'm headed to St. George this week to see my brother Mike and my sister Suzanne and to see "Aladdin". My next post will be from there.
The result of the CT scan and the skeletal survey is that there was nothing to indicate any source of the pain in my back. I have a little degeneration in the spine, probably due to my age. I also found out I had two fractures that I didn't know about, in one of my ribs and in my pelvis. Both apparently are healed. My guess is that they were caused partly by the damage to my bones from the myeloma, but I have no idea when I got them.
The blood work showed that, as usual, the Revlimid therapy I take has suppressed my immune system, and depleted my red blood cells, perpetuating my anemia. I am off Revlimid this week, which is part of my regimen: 21 days on and 7 days off. I will meet with Dr. Nibley this week to decide what to do differently, if anything. As far as the cancer markers, which indicate how active the cancer is, that test has to be sent out to another lab, so I won't get those results for a day or two.
Every Friday morning I take dexamethasone, a steroid that is part of my cancer treatment regimen. I noticed two Fridays ago that I had no back pain all that day, after taking the "dex", but the pain returned part way through the next day. This last Friday, however, the pain went away and never came back. So I'm guessing the dex has somehow cured the cause of the pain, or at least masked the pain. Either way, I am really grateful. The pain was very debilitating; it gave me real empathy and compassion for those who suffer chronic back pain.
I just got a great call from my good friend Lee Taylor, from my graduating class at Springville High. Lee looks after all of us and keeps the class together, a "calling" he selflessly took upon himself years ago and has carried out faithfully ever since. He travels widely and always makes a point of visiting any class member who happens to be in his path. He's a great guy.
I'm headed to St. George this week to see my brother Mike and my sister Suzanne and to see "Aladdin". My next post will be from there.
9.09.2012
I know the best post is a short post but I have some catching up to do. Back in April, I was just getting over the RSV-pneumonia-bronchitis adventure that put me in the hospital when I hit the next speed bump. Laraine and I had just gone to Marriott Mountainside resort in Park City for a week of fun, relaxation, and just getting away from our chores. Sunday was great; daughter Aly and her husband Dave joined us and we went to Church in Heber, where we ran in to my nephew Brad Allen, who is on the high council there. We had a lovely dinner and evening.
Then, early Monday morning I awoke with vomiting and diarrhea which lasted about 18 hours. Apparently I had a good old GI (gastro-intestinal) infection, commonly known as stomach flu. I don't know how I got it. At any rate, by the end of our week I was doing OK, but I did seem to have aftershocks for several weeks. Since my transplant, I do get indigestion and sometimes nausea, much more than before.
Then, early Monday morning I awoke with vomiting and diarrhea which lasted about 18 hours. Apparently I had a good old GI (gastro-intestinal) infection, commonly known as stomach flu. I don't know how I got it. At any rate, by the end of our week I was doing OK, but I did seem to have aftershocks for several weeks. Since my transplant, I do get indigestion and sometimes nausea, much more than before.
The next adventure was traveling to Shaker Heights, near
Cleveland, in late May through early June to visit our son David and his
family. It was a great trip as we got to know much better our grandchildren Miles, Faye,
and new baby Gwen, and participate in many fun activities. We watched Dave
graduate from medical school (woohoo!) and took part in blessing baby Gwen. The
trip was marred just a little by bouts of bad indigestion and nausea, about
every two or three days. The other bad thing was when I lifted a big bag of
soil at an awkward angle. I thought I had pulled a muscle, but I found out
later I had injured my back. On the plus side I did feel strong enough to
exercise an hour every day, alternating between running and biking.
After our two weeks in Shaker Heights, Dave, Cicely, the three kids and the two of us packed into the family van and headed for Orlando. We took two days, staying overnight in Charlotte, North Carolina. It wasn't as bad as you would think; the kids were great to travel with. We had a great time at Disney World, spending four days in the various parks and resting a couple of days in between. At the end of our week we flew home to Salt Lake and the kids drove back to Shaker Heights.
Aside from intermittent nausea, I felt pretty good the whole time with the kids, but apparently I caught something from somebody somewhere, because the day I got back I got really sick with chills and fever and was down for several days. The doctor put me on antibiotics and after a few days I was OK.
At the end of June, we sold our ancient van (1998 Windstar) and bought a used, crew-cab pickup (2006 Toyota Tundra) from one of our neighbors. For our first road test of the new truck, Laraine and I took the tent trailer to Great Basin National Park just across the border in Nevada. We camped at 10,000 feet and had a great time--no health problems. We hiked to see 3,500 year-old bristlecone pines, and toured Lehman Cave. If you haven't been there, you should go.
The first week of August brought the extended Cain family annual camp-out at Monte Cristo, above Huntsville, where we have camped the last few years. Some of us spent one day driving around northeastern Utah and parts of Idaho and Wyoming, tracking my brother Mike as he trained for the upcoming LOTOJA bike race. As usual we spent Friday of the camp week at Pinedale Reservoir, enjoying our son-in-law Brandon's boat. Fortunately, I felt pretty good the whole week.
Between adventures, I spent the summer working in the yard, trying to simplify the landscaping to make it easier to maintain and make it more attractive to potential buyers when we sell our house some day. One of the projects was to take out our large vegetable garden and replace part of it with grass. My neighbor had some leftover sod, so I went to work putting it in. I usually work two or three hours in the yard before noon and then quit for the day; that's about all I can stand in my condition. But for some reason (or lack of reason) I worked all day for several days in a row trying to finish the sod. In addition, the sod was very wet and consequently very heavy. Result: I now have an injured back and chronic back pain. The multiple myeloma may have weakened my back and predisposed me to back problems.
Speaking of multiple myeloma, I continue on the maintenance therapy, consisting of a daily Revlimid pill for three weeks, and then a week off. As I have mentioned before, the Revlimid makes me anemic and lowers my immune system, along with fighting the cancer. At one point, I had to take an extra three weeks off because my immune system was dangerously compromised. About three months ago, Dr. Nibley added a weekly dose of dexamethasone pills, a powerful steroid that fights the cancer, but that also has many side effects, including substantial muscle atrophy. The plus side is that on the day I take it, I have no back pain.
As to the cancer itself, we're getting a mixed message. One of the markers, the M-spike, has remained steady at a low level, which is good. On the other hand , the IgA measure has risen steadily since my transplant and is now in abnormal territory, which is not good. I will undergo some more tests later this week and meet with Dr. Nibley the following week, to try to figure out what is going on and what to do next. We might change medications. I have also considered getting a second opinion, probably from the Huntsman Cancer Institute, just to get another viewpoint.
On church matters, I was released from the bishopric just before my transplant and didn't have a calling for a while afterward, but now I am teaching gospel doctrine and serving as a stake auditor. Laraine has just been called as a counselor in the stake Relief Society presidency.
In the meantime, Laraine and I have spent this week with my brother Mike and his family at the Ideal Beach Resort at Bear Lake. Our daughter Libby and her boys also joined us for a couple of days earlier in the week. The main point of the trip was Mike's participation in the famous LOTOJA (Logan to Jackson) bike race, which took place yesterday. Mike's wife Jan, their daughter Jessica, my sister Colleen, and Laraine and I had a great time providing support to Mike during the race. Driving through the most beautiful scenery, we met Mike at several pre-selected feed zones along the route to replenish his supplies and otherwise give aid and comfort. Mike did great, finishing in a very respectable 12 hours and 28 minutes, especially given his age of fifty-seven.
I promise not to wait so long until the next post. Our next big adventure is a trip to colonial Williamsburg in October, but I will get back to you before that.
4.10.2012
Easter Weekend - April 7-9, 2012
Had a little upset this weekend. The whole family has had colds the last week or so, including Jeff. Saturday evening Jeff's temp went up to 101.9 -- not good, so we took a trip to the emergency room, where he was x-rayed, had blood work done, etc. At about 1:00 a.m. the doctor said that they were going to keep Jeff and treat him for possible pneumonia. He eventually was diagnosed with a bronchial infection (today Dr. Hales said that he has RSV). So the family spent part of Easter visiting Jeff at Alta View Hospital. Jeff was given antibiotics which has helped, and they sent him home Monday morning. Still not feeling great. We follow up with Dr. Hales Tuesday and Dr. Nibley Wednesday. Since Jeff 's immune system is still compromised, it just takes longer for him to recover. We have now learned that we still need to be very careful. We cannot expose him to people who are sick.
 |
| We all had to mask up, even little Max! |
3.26.2012
On March 14, we went for our weekly testing and to assess the prior week's tests with Dr. Nibley. This time my white cell counts were down slightly, which is the main expected side effect of Revlimid. The decline wasn't out of the normal range, but Dr. Nibley decided to cut the dosage anyway, to 15 mg., since studies show that the lower dose is just as effective. I also received my monthly infusion of Zometa, which helps to heal the bone damage caused by the cancer last year.
On St. Patrick's Day we had another great luncheon with friends from Springville High. Get-togethers like this are frequent among our class alums, but this one was again specifically to show support for Laraine and me. There were more in attendance than last time, some who I hadn't seen for a few years. The instigator of these meetings was my good friend Lee Taylor, who has appointed himself our class den mother, and over the past few years has gone to great lengths--literally traveling thousands of miles--to keep in touch with all the members of our class and to keep us in touch with each other. We have a very special class, and it continues to be that way in large part because of Lee.
On Monday the 19th, we returned to the Blood and Marrow Transplant Unit at LDS Hospital for 100-day post-transplant testing. They did many of the same tests they had run just before and just after the transplant to see how I'm doing against those benchmarks. There was a full battery of blood tests, a chest x-ray, a pulmonary function test, and an analysis of urine collected over the prior 24 hours. We won't get the results until next week.
Meanwhile, I feel pretty good. The neuropathy in my feet isn't as bad these days; either it is gradually healing by itself, or the pain medicine, Lyrica, is doing its job. Either way, I'm grateful. I'm still quite anemic and continue to be tired and lack energy, so my productivity is not great. It doesn't seem to matter much what I do or don't do during they day, by early evening I'm pretty drained. But life is good and I count my blessings every single day.
On St. Patrick's Day we had another great luncheon with friends from Springville High. Get-togethers like this are frequent among our class alums, but this one was again specifically to show support for Laraine and me. There were more in attendance than last time, some who I hadn't seen for a few years. The instigator of these meetings was my good friend Lee Taylor, who has appointed himself our class den mother, and over the past few years has gone to great lengths--literally traveling thousands of miles--to keep in touch with all the members of our class and to keep us in touch with each other. We have a very special class, and it continues to be that way in large part because of Lee.
On Monday the 19th, we returned to the Blood and Marrow Transplant Unit at LDS Hospital for 100-day post-transplant testing. They did many of the same tests they had run just before and just after the transplant to see how I'm doing against those benchmarks. There was a full battery of blood tests, a chest x-ray, a pulmonary function test, and an analysis of urine collected over the prior 24 hours. We won't get the results until next week.
Meanwhile, I feel pretty good. The neuropathy in my feet isn't as bad these days; either it is gradually healing by itself, or the pain medicine, Lyrica, is doing its job. Either way, I'm grateful. I'm still quite anemic and continue to be tired and lack energy, so my productivity is not great. It doesn't seem to matter much what I do or don't do during they day, by early evening I'm pretty drained. But life is good and I count my blessings every single day.
3.09.2012
Good News
Went to the doctor March 8th and got the report from last week's tests. Jeff's M spike is 0 and his igA level is at 150! The PA we visited with told us we didn't need to be there because everything looked good! We are very grateful for this good news. Another week of Revlimid and then a week off.
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