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.
11.23.2012
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.
Subscribe to:
Posts (Atom)