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!