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.
12.30.2012
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!
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