September 2010 Notes

This month's test results were the same as those for previous months. No surprises there. Meanwhile, I have been visiting some of the other physicians in my life.

The cardiologist didn't even bother with a fresh EKG; based only on a visual inspection and a simple vitals check, he finally authorized me to return to its owners the supplemental oxygen equipment that had been cluttering up my garage for the past year. Barring some intervening disaster, he doesn't want to see me for another year.

My primary care doc has resumed the mundane tasks associated with, well, primary care: screening me for prostate cancer, checking blood lipids, prodding my lymph nodes. As you may recall, prior to June of last year, she had me on Lipitor for elevated cholesterol; that was in the oncologist's way when he began treating me, so I haven't taken it since. He's completely open to my resuming this therapy, if that's what she decides I should do. But from now on, the myeloma will be the elephant in the room whenever any health-related action is being contemplated for me; she is always going to have to get a green light from the oncologist for whatever it is she wants to do. In the case of cardiovascular issues, she will need to consult with the cardiologist as well.

August 2010 Test Results

By now, you're probably getting tired of hearing this litany: good blood chemistries; no bad monoclonal proteins; somewhat depressed blood cell counts. The Christiana oncologist: "I'm happy." Which seems a bit of an understatement, given the increasingly bubbly demeanor he is exhibiting during my monthly visits to his office. "It's not about me," he says when this is pointed out to him; but he's clearly enjoying the absence of drama in my case. "You were really sick -- a couple of times." And now I'm out of the woods -- for now, at least.

At some point recently, I realized that I had been taking omeprazole for what seemed like forever, and couldn't remember why. The oncologist thinks it was originally to protect my tummy from the ravages of the steroid dexamethasone; but I haven't been taking any of that since before the stem cell transplant, and it was included in the list of medications that I brought home from Johns Hopkins in January. In any case, I am now at liberty to drop it; but if doing so causes problems then I can just take it up again. So I have stopped taking it for now, which leaves me with just the prescriptions for Revlimid and allopurinol, and the monthly shot of Aredia.

I continue to try to strengthen myself against the collateral damage done by the cancer last year. I can now cover two miles on the treadmill in less than 35 minutes. I am gradually increasing the weight I will consider trying to lift and carry. My stamina is much improved. I am hovering in the vicinity of my "normal" adult weight. The pain of fractured ribs and vertebrae is slowly diminishing. I consider myself to be on track to return to work sometime in the fall.

Grandpa Shaffer's "Bone Cancer"

I think I have previously mentioned the fact that not much is known about the causes of multiple myeloma, and that most of the usual suspects don't apply to me. I was never exposed (as far as I know) to Agent Orange. I was never employed in the manufacture of herbicides or pesticides. And so on. There is a genetic component, but again, as far as I know, I am the first member of my family to have myeloma. Or am I?

Some senior members of my family are under the impression that my paternal grandfather was killed by "bone cancer". I'm not sure where this notion came from, but it's very suspicious. True bone cancers are exceedingly rare. Most skeletal tumors are caused by cancers that arise elsewhere and then metastasize. But such tumors don't thus magically become "bone cancer"; a skeletal tumor caused by a metastasized breast cancer, for example, is still considered to be a breast cancer tumor.

The situation is even more misleading where multiple myeloma is concerned. Otherwise reliable medical web sites -- even a few sites dedicated solely to multiple myeloma -- sometimes mischaracterize myeloma as a bone cancer, or as a cancer of the bone marrow. But really it is neither. Yes, plasma cells originate in, and are mainly found in, the bone marrow, but they are also transported throughout the body by the lymphatic system. They are considered to be blood cells, not bone marrow cells. Cancers of the leukocytes that are actually considered to be constituents of the bone marrow, and which thus could be considered bone marrow cancers, are called leukemias. But in multiple myeloma, it is the plasma cells that are cancerous -- not the stem cells, and not the leukocytes that eventually become plasma cells. The fact remains that, when multiple myeloma causes tumors, they usually occur in the bones, thus possibly leading the underinformed observer to conclude that the patient has "bone cancer".

So: Did Grandpa Shaffer really have bone cancer? Or was it really some other type of cancer -- was it, say, multiple myeloma? The answer would, or should, be of more than just casual interest to the other members of my family, given the genetic aspect of myeloma.

So recently I undertook to obtain his death certificate from the Division of Vital Records of the Department of Health of the Commonwealth of Pennsylvania. For a fee, it is possible to obtain a copy of such a document; it can be ordered online. But not just anyone can get a copy of just anyone's death certificate. You must fall into one of the categories of individuals having a particular relationship with the deceased; in my case, "direct descendant". And you must have an approved reason for wanting the document; again, in my case, "medical history" was sufficient (but as an aside, mere genealogy isn't a good enough reason -- I have no idea why not).

My copy of the death certificate arrived in the mail a couple of days ago. Ultimate cause of death: "Metastatic Lung Carcinoma". I'm a little disappointed by this, as it sheds no additional light on my own case. But I'm certainly not surprised.

The Resistance Problem

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.

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.

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).

One Year After

June's blood test results were similar to May's: Normal chemistries and proteins, somewhat low but acceptable blood cell counts and immunoglobulins. In addition to the blood tests, this month I also got a skeletal X-ray survey, and an ultrasound on my legs.

The comparison of the current skeletal survey with the last one, done in October of last year, indicates that, if lytic lesions can be taken as evidence of the presence of the myeloma, then the disease has more or less been stopped in its tracks. There is no evidence of spreading, for example, to the arms, legs, or pelvis. Although the skull and spine are unchanged and seemingly stable, the ribs show improvement, which comports with the (ever so) gradual reduction of the pain that I have endured in that area.

The ultrasound, taken as a precaution against the threat of blood clots introduced by the Revlimid that I have resumed taking, revealed no such clots.

The oncologist expressed great satisfaction with these results; he appeared as jocular as such a very reserved individual gets. As of this month, in my case he can give himself credit for one year of survival. Survival, where cancer is concerned, is measured from the date of positive diagnosis. This seems somewhat arbitrary, since the patient has clearly already "survived" having the disease for some period of time already by then; but there is really no other way to objectively measure it, since there is no way to determine exactly when the onset of the disease occurred. By June of 2009, I may have had multiple myeloma for six months or six years. In any case, survival, thus defined, is nearly the sole measure of success or failure in the oncological world. The survivor's quality of life, as important as that might be, is too subjective in nature to serve as a scoring mechanism. Moreover, cancer is such a rapacious adversary that the oncologist must be resigned to burying most of his patients sooner or later. He counts a success if he manages to cheat the statistics by some span of time. If he is very good or very lucky, he somehow pushes the patient out onto the long right-hand tail of the life expectancy distribution. In the case of multiple myeloma, the long tail begins around five or six years. So I still have a long road to travel to reach it.

Frankly, I am avoiding using the occasion of this anniversary to indulge in any extensive reexaminations of the road traveled thus far. This strategy for maintaining some kind of emotional equilibrium in the face of -- dare I use what seems an overused term -- horror, has some disadvantages. The worst of it is that I can seem ungrateful for the truly herculean efforts that have been made by many other people (my wife in particular) to keep me from sliding into the abyss. I can only offer a simple apology, and the excuse that dwelling on the events of the past year will do nothing to help me get through the next one. Also, doing so creates a certain feeling, that I would prefer to avoid. It reminds me of the feeling I experienced on emerging from the Holocaust Museum in Washington, when I visited it years ago -- a feeling of inescapable involvement in an enormity that roams the world, devouring souls without justification and without mercy.