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.

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.

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.

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.

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.

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.

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.

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!