Friday, February 19, 2010

The 60-Day Evaluation

On Thursday 18 February we traveled to Baltimore for my 60-day stem cell transplant evaluation at Johns Hopkins. Blood, urine, and bone marrow were extracted from me for testing. Eventually, we ended up in the office of the Hopkins oncologist, for the first time since the original consultation, back in October. Apropos of this, Huong mentioned our surprise that we had not seen him during the entire course of the transplant, to which he responded that we should be glad about that, since he does not become personally involved unless something goes very seriously wrong, and the patient is at risk of imminently expiring.

The good news is that all the relevant blood chemistry and cell count numbers are in their normal ranges, or at least close enough for comfort. He cleared me both for air travel and for wine consumption. The former permission was granted with the caveat that any immunizations required for overseas travel would likely not work so soon after the transplant; the latter was of course accompanied by the usual boilerplate about not indulging to excess and so on.
The results of the bone marrow biopsy will not be available until sometime later this week.

When I questioned him regarding the efficacy of these tests, in view of the fact that they were insufficient on their own for my original diagnosis, he surprised my by saying that one major reason for doing them was to detect any remaining
chemotherapy-inspired toxicities that might have to be dealt with at this point. This was the first I had heard of this. In my case, so far, there is no evidence of any such toxicities. But with respect to my point, he didn't really seem to have much to offer (in my opinion, and also in Huong's). Prior to the transplant, one of the more esoteric blood protein measures was a bit elevated, but many patients exhibit much higher levels, and so for them any post-transplant reduction in this number would provide more reassurance than it does for me. So I am still puzzled about how exactly we know what effect the transplant had on the cancer itself. The unsatisfactory (to me) answer seems to be that we really don't know, and the path forward will be to continue testing and watching for symptoms. So what, in the end, was the justification for doing the transplant in the first place? Apparently, simply this: Statistically, patients who undergo "successful" transplants (where "successful" is defined as not killing the patient) live a few years longer than those who don't.

Another disappointment came when we talked about my damaged skeleton. He agrees that bisphosphonate therapy (i.e. Aredia) should be resumed, but he expressed skepticism that it would do anything to roll back any of the damage already done. As things stand I am at increased risk of fractures, and the Aredia will reduce that risk by strengthening the bones, but he doesn't think that it will cause new bone to grow to fill in the existing lytic lesions. This is a subject that I need to revisit with the Christiana oncologist.

I attempted to draw him out on the subject of whether or not he thought I would need long-term chemotherapeutic maintenance therapy, but he would have none of it, declaring that this was really a subject to be addressed by the Christiana oncologist, whom I will next see in March.

Tuesday, February 9, 2010

A Miscellany

Not much to speak of going on right now, so I have worked up a collection of items that do not, individually, seem to warrant posts of their own.

I may have mentioned that, soon after the transplant, my hair, which I previously had cut very short but not shaved, began coming out in clumps. One had only to touch it to make it fall out. It was flying around everywhere. So one day, after being dismissed from the IPOP clinic, instead of returning to the apartment as usual, we instead sought out the local outpost of Image Recovery Centers, which specializes in helping cancer patients deal with their appearance issues, and which is located right there in the cancer center. I wasn't interested in their collection of wigs, but they do have a little salon where one can have one's head shaved. I don't know whether the all-female staff is selected for, or is just trained to exhibit, what appears to be the defining personality trait of the place: a soothingly calm
demeanor so reassuring and relaxing that one is caused to feel deeply at ease, if not to fall asleep. Once I was shorn, we got out of there before we had the chance to do anything foolish, such as purchasing one of the New Age-y CDs or aromatherapy kits on offer. At this point, I am getting a little bit of peach fuzz on my skull, but I still must wear a hat or cap, even indoors, to avoid feeling a draft up there.

In the first several weeks after the transplant, I had some problems with short-term memory loss. Huong would speak of some recent incident as if she expected me to know what she was referring to, and I would be able to come up with nothing about it, as if it had never happened. This was of course disorienting and frightening, but this symptom is apparently both relatively common and short-lived, and has faded with time. But now I am noticing an interesting symptom involving longer-term memories. I find that I sometimes project my latter-day damaged self into memories of past incidents that actually occurred (I think), but that predated the onset of my illness. Whenever I realize that I am doing this, and attempt to repair the memory by replacing the "sick" self with the original "well" self that surely belongs to it, I sometimes find I am unable to do so, and I begin to lose confidence in
the memory as a whole.

Whatever the degree of success that has been attained by the transplant, it cannot have repaired the many cancer-caused lytic lesions peppering my spine and ribs. The Christiana oncologist has indicated that it is his intention to eventually resume the bisphosphonate therapy (probably consisting of monthly Aredia IVs, as before the transplant) as a countermeasure. This reminds me of an incident that occurred the last time I received a dose of Aredia. I was seated next to a man who turned out to be a 10-year multiple myeloma survivor. He was first diagnosed when he was about my age, and endured a successful bone marrow transplant. He is now on maintenance therapy that is nearly identical with my induction therapy (Revlimid plus dexamethasone plus Aredia); but unlike in the case of my induction therapy, he is stuck with taking these drugs continuously, as far into the future as anyone can now see. So for me, his story was composed of both encouragement and discouragement, in equal parts.

Saturday, February 6, 2010

Another Reunion

On Friday I had my first consultation with the cardiologist since before the transplant. As you may recall, he nearly miraculously saved our bacon (or at least the laboriously constructed transplant schedule) by successfully allaying, at almost the last possible moment, the Hopkins oncologist's fears arising from the irregular EKG that I produced in the pre-transplant qualifying round. This time, he gave me as close to a completely clean bill of health (well, from a strictly cardiological point of view) as I am ever likely to get. He confessed to being "really worried" about me, back when we first encountered each other, when I was in the hospital battling pneumonia; recalling what now seems like ancient history, he was referring to the specter of amyloidosis caused by the myeloma doing permanent damage. Now, with the various symptoms that then concerned him -- shortness of breath, low blood pressure, low blood oxygen, abdominal edema -- a relatively distant memory, he sees no reason to resume dosing me with furosemide, which I had continued to take right up until the transplant team discontinued all of my medications in favor of their own. Barring some problem, he doesn't want to see me again for six months.