Cancer Free!!! (At Least for Now)

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.

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.

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.