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« Reply #522 on: August 07, 2009, 11:52AM » |
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Okay, here’s the latest. And this will probably be the last update before my clinical trial starts next month.
Myeloma is a very slow killer. It’s not like being shot or electrocuted; it’s more like an accelerated aging process. You feel like you’re getting older much faster than you should be. I have good days and bad, but I don’t notice much difference comparing one day with the one before it. I have to compare the way I feel today with the way I felt two months ago to see any change, and even then it’s minimal. I can’t do the things I used to do – even a few months ago. I’ve always been an avid reader, but now my vision is so blurred I have to have a powerful desk lamp aimed directly at the page to be able to make out the words. I’ve always loved sketching and drawing, but my vision and unsteady hands don’t permit that any more. I think the worst part is the physical weakness; my son now has to lift and carry anything heavy that needs to be moved. That’s distressing, especially for someone who values his independence the way I do.
I have only one fear in life, and that’s the prospect of dying by inches. I watched both my parents slip away slowly, and I dread putting my family and friends through that anguish. My brother was the only member of my family who got it right; he died of a cerebral hemorrhage. So I’m not thrilled at the prospect of dragging this out too long. Chris has virtually put his life on hold so he can be here if and when I need him, and that hurts me deeply. The combination of chemotherapy and the disease has left me with a greatly reduced immune system, so I live on amoxicillin and other antibiotics. As I write this, I’m squirming in my seat from the discomfort of yet another kidney infection. There are days when I wish a massive infection would set in and put a peaceful end to it all. But I’m too stubborn, and too much of a fighter, to let that happen.
As I said, myeloma progresses very slowly. I had a dose of chemo last week, and my blood work results were so good that I don’t need another until October. The oncologist attributes this to a strong constitution and positive attitude.
On September 8, I will take part in a clinical study program at the Mayo Clinic here in Jacksonville. The program is run by Dr. Carlo Croce, Department of Molecular Virology, Immunology, and Medical Genetics and Comprehensive Cancer Center, Ohio State University, Columbus, Ohio. D. Croce believes he has identified the magical “silver bullet” responsible for most cancers and, indeed, many other diseases with roots in genetic dysfunction. His research centers on “microRNA” (mirNA). In technical terms:
“Cancer initiation and progression can involve microRNAs (miRNA), which are small noncoding RNAs that can regulate gene expression. Their expression profiles can be used for the classification, diagnosis, and prognosis of human malignancies. Loss or amplification of miRNA genes has been reported in a variety of cancers, and altered patterns of miRNA expression may affect cell cycle and survival programs. Germ-line and somatic mutations in miRNAs or polymorphisms in the mRNAs targeted by miRNAs may also contribute to cancer predisposition and progression. We propose that alterations in miRNA genes play a critical role in the pathophysiology of many, perhaps all, human cancers.”
The entire program will be completed in a single day, and involves a series of ten injections. I’ll be given a shot, then rest and be very still for an hour, and then receive another shot, and so on, until all ten have been administered. These injections are supposed to replace the defective miRNA that is causing my disease and, if all goes well, ultimately result in a complete cure. It will be months before it’s known whether the trial was succeeded or not, so I’ll have to continue a normal treatment regimen while waiting. Of course, it’s also a “double blind” test, so if I’m in the control group and receive only the placebo, all bets are off. I won’t know until December which group I was in.
On the same day of the clinical test, they’re also going to draw a bone marrow sample. I’ve had this done before, and it’s not pleasant. They insert a long needle into the back of your hip bone and draw out the sample. It’s impossible to anesthetize bone, so you feel everything they’re doing. It feels like your hip is being pulled inside out. It also leaves you extremely uncomfortable for days afterward. The marrow they extract will be biopsied, to show the actual progress of the disease. A sample will also be frozen and stored for later use. In case the mirNA test doesn’t work, the disease will continue to progress, albeit slowly. At some point, it will morph to Stage II and III. When that happens, they will perform a procedure they call a stem cell transplant. That’s really a misnomer, and it doesn’t actually describe what’s done.
When that time comes, they will place me in hospital and administer a massive dose of chemotherapy. Under uncontrolled conditions, this would be a lethal dose, since it will completely destroy my immune system. Using the bone marrow they harvested earlier, they will reintroduce my own stem cells back into my body. These cells will then rebuild the immune system. This will take some time, and I’ll be kept in a sterile environment until it’s safely completed. But the result should be an immune system that’s at least 75% restored to normal function. It’s not a cure – it’s a delaying action, and can only be done once. But it should extend life expectancy somewhat.
Anyway – that’s where things stand right now. Sorry if I’ve made your eyes glaze over. But lots of folks have been asking how I’m doing, so I thought I’d summarize it all in one place. Thank you all, from the bottom of my heart, for your prayers and continued support.
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