I thought maybe I should attempt to clarify the resistance problem I mentioned in the previous post.
Unlike most of the more familiar types of cancer, multiple myeloma does not arise in a specific organ, but is systemic in nature. Even if, as in my case, there are tumors, there is no hope of chopping them out and then testing to see if you can convince yourself that you "got all the cancer". You can think of myeloma as being metastatic right out of the starting gate. The cancerous cells are white blood (plasma) cells, which are everywhere in the body. Furthermore, no known chemotherapy can be guaranteed to get all the cancerous plasma cells either; a few are bound to survive the encounter with the chemotherapeutic agent, and if they take it into their heads to begin multiplying, the patient is back where he began -- except that the previous "successful" therapy is no longer a viable option. At that point, the patient and his oncologist must shop for another therapeutic regimen to try.
Some myeloma patients experience this cycle of treatment, remission, and relapse many times. A good illustration of this is a recent Phase 2 clinical trial of Onyx Pharmaceuticals' carfilzomib, which is designed to add yet another option for this type of patient. The trial involved 266 "heavily pretreated advanced multiple myeloma patients". These patients had undergone a median 5 prior therapeutic regimens, involving a median 13 chemotherapeutic agents.
This isn't necessarily my fate. There are myeloma patients who survive many years on the same maintenance therapy, without disease progression. I'm keeping my fingers crossed.
Wednesday, July 28, 2010
Monday, July 26, 2010
Bone Marrow Biopsy Results
I was finally able to obtain the results of the biopsy done at Johns Hopkins on July 1: "No evidence of myeloma... There is no evidence of an increase in plasma cells."
So, even though it's never wise to claim that one has "beaten" myeloma -- the fact remains that, for most patients, the eventual development of resistance, followed by disease progression, is more or less inevitable -- this is probably as close as I can get to overcoming this disease, and should celebrate it as such. I'll breathe that much easier, though, if I get the same results for the 12-month evaluation, which will happen around the beginning of next year.
So, even though it's never wise to claim that one has "beaten" myeloma -- the fact remains that, for most patients, the eventual development of resistance, followed by disease progression, is more or less inevitable -- this is probably as close as I can get to overcoming this disease, and should celebrate it as such. I'll breathe that much easier, though, if I get the same results for the 12-month evaluation, which will happen around the beginning of next year.
Sunday, July 18, 2010
July 2010 Tests
On Thursday July 1 we traveled to Johns Hopkins for the six-month stem cell transplant evaluation. The battery of tests done was identical, I think, to that of the sixty-day evaluation done in February: blood and urine tests, and a bone marrow biopsy.
I have experienced the biopsy procedure several times by now, but I don't believe I have ever described it in detail. There is really not very much to it. I am ushered into a small room containing a padded table, and instructed to unfasten my trousers and lie face-down on the table. The biopsy technician pulls my clothing down far enough to expose the right hip. Before each step, he gives brief announcements warning what is about to happen. First comes the application of a lubricant to the area where the needles will go in. Then a shallow local anesthetic is administered: "A little stick, and some burning." Next comes another local, but closer to the bone: "Another stick, deeper this time." The crucial part is of course to get a larger needle into the soft marrow of the hip bone: "You'll feel some pushing back here... More pushing..." Which is exactly the sensation, just as if some blunt object were being pushed at the hip. And then finally: "Pulling now.... Another pull..." This is the marrow being siphoned out through the hollow needle. But I would not describe the sensation exactly as "pulling". I'm not quite sure how to characterize it. I wouldn't describe it as "painful" either, although it is sufficiently unpleasant as to make a glad ending. The closest comparison I can draw, although not really a good one, is with the drilling of an anesthetized tooth. The impression is not as vivid, and yet somehow seems more invasive, as if the center of one's physical being had been penetrated, which in a sense it indeed has been; it's hard to get "deeper" than the marrow of one's bones. A very sensitive person might have the feeling of having been violated in a way, which again is not completely unfounded. In any case, the needle is immediately withdrawn, a patch is affixed to the point of entry, and the patient is instructed to button up and be on his way.
More than two weeks later, the results of this procedure remain unavailable. By contrast, the results of the blood and urine tests were available within a couple of hours. They appear as numbers in a spreadsheet-like report, each "cell" having a colored background, or not, indicating its relationship to the "normal" range of values for that number. A number comfortably in the normal range does not have a colored background; a number in the normal range, but close enough to one or the other end of the range, is "flagged" by having a yellow background; a number outside the normal range is flagged by having a red background. "I am not used to seeing chemistries without any flags," said the Hopkins oncologist, on reviewing my results. Some of the cell count numbers were flagged, but that is to be expected, as my bone marrow is still recovering its normal function of making blood cells (and Revlimid has the side effect of suppressing white blood cell counts as well). But, pending the results of the biopsy, the oncologist is as pleased as can be with my progress so far. He granted me permission to terminate the antibiotic I have been taking all year so far (a good thing, since I was about to run out of that one). He instructed me to consult with the Christiana oncologist on the subject of possibly dropping the antiviral as well. When I return for the 12-month evaluation, assuming all is still going well, I will begin the process of reacquiring my childhood immunizations, all lost in the course of the stem cell transplant.
On July 13, the Christiana oncologist joined the party congratulating me on my progress, and told me to stop taking the antiviral, once I have run out of what I have. As a result, in terms of medications, that leaves me with only Revlimid, allopurinol, omeprazole, and the monthly Aredia IV (plus non-prescription stuff like calcium and low-does aspirin).
I have experienced the biopsy procedure several times by now, but I don't believe I have ever described it in detail. There is really not very much to it. I am ushered into a small room containing a padded table, and instructed to unfasten my trousers and lie face-down on the table. The biopsy technician pulls my clothing down far enough to expose the right hip. Before each step, he gives brief announcements warning what is about to happen. First comes the application of a lubricant to the area where the needles will go in. Then a shallow local anesthetic is administered: "A little stick, and some burning." Next comes another local, but closer to the bone: "Another stick, deeper this time." The crucial part is of course to get a larger needle into the soft marrow of the hip bone: "You'll feel some pushing back here... More pushing..." Which is exactly the sensation, just as if some blunt object were being pushed at the hip. And then finally: "Pulling now.... Another pull..." This is the marrow being siphoned out through the hollow needle. But I would not describe the sensation exactly as "pulling". I'm not quite sure how to characterize it. I wouldn't describe it as "painful" either, although it is sufficiently unpleasant as to make a glad ending. The closest comparison I can draw, although not really a good one, is with the drilling of an anesthetized tooth. The impression is not as vivid, and yet somehow seems more invasive, as if the center of one's physical being had been penetrated, which in a sense it indeed has been; it's hard to get "deeper" than the marrow of one's bones. A very sensitive person might have the feeling of having been violated in a way, which again is not completely unfounded. In any case, the needle is immediately withdrawn, a patch is affixed to the point of entry, and the patient is instructed to button up and be on his way.
More than two weeks later, the results of this procedure remain unavailable. By contrast, the results of the blood and urine tests were available within a couple of hours. They appear as numbers in a spreadsheet-like report, each "cell" having a colored background, or not, indicating its relationship to the "normal" range of values for that number. A number comfortably in the normal range does not have a colored background; a number in the normal range, but close enough to one or the other end of the range, is "flagged" by having a yellow background; a number outside the normal range is flagged by having a red background. "I am not used to seeing chemistries without any flags," said the Hopkins oncologist, on reviewing my results. Some of the cell count numbers were flagged, but that is to be expected, as my bone marrow is still recovering its normal function of making blood cells (and Revlimid has the side effect of suppressing white blood cell counts as well). But, pending the results of the biopsy, the oncologist is as pleased as can be with my progress so far. He granted me permission to terminate the antibiotic I have been taking all year so far (a good thing, since I was about to run out of that one). He instructed me to consult with the Christiana oncologist on the subject of possibly dropping the antiviral as well. When I return for the 12-month evaluation, assuming all is still going well, I will begin the process of reacquiring my childhood immunizations, all lost in the course of the stem cell transplant.
On July 13, the Christiana oncologist joined the party congratulating me on my progress, and told me to stop taking the antiviral, once I have run out of what I have. As a result, in terms of medications, that leaves me with only Revlimid, allopurinol, omeprazole, and the monthly Aredia IV (plus non-prescription stuff like calcium and low-does aspirin).
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