Last week I had my bimonthly MRIs and appointment with Dr. Fine at NIH. When he came into the examination room (about 4 hours after the appointment-we've learned that this is the Mayo Clinic style) Dr. Fine did not ask me about astrophysics, which meant that my condition was not totally stable, and some further treatments are needed.

But the news was not terrible. Most significantly, the tumor in my brain had been reduced significantly by the steriotatic radiation therapy and no new tumors were noticed on the MRIs. Thus ependymoma in my brain is not a current concern. As we left Debbie and I noted to each other that in December Dr. Fine was extremely focused on the spread of the tumors to my brain, but now this issue was treated as a currently solved problem, and the focus has shifted to my spine; in December Dr. Fine was unconcerned with the new symptoms resulting from activity in my spine.

In brief, both the MRIs and my symptoms show progression of the tumors in the spine. As I mentioned last time, the spinal cord in the middle of the back shows swelling that probably results from the infiltration of tumor cells. In addition, a small tumor in the lower back may have grown somewhat (the increase is about what can be resolved by the MRIs). The numbness of my legs-the left is more extreme than the right-has increased somewhat over the last two months, although there is no loss of function; I have no real discomfort from these symptoms. Dr. Fine's conclusion is that the renewed ependymoma activity is systemic to the spine, and that the treatment should not focus on individual tumors. Two months ago I was put back on Temodar (a rather mild chemo taken as pills), but after two 4 week cycles the tumor progression indicates that something new should be tried.

If the tumors had Epithelial Growth Factor Receptors (EGFR), then a drug called Tarceva that blocks these receptors would have been the obvious choice (although it was developed and is approved for other cancers). A sample from the tumor that was removed from my neck last August was sent to Duke, and the stain was negative for EGFR. So this very promising drug will not work for me.

The drug that Dr. Fine uses after Temodar is carboplatin, a platinum-based chemotherapy drug, and thus I started it today. This is a much harsher drug that suppresses the blood components, and has other side-effects such as nausea and fatigue. It is injected intravenously once every cycle; in my case the cycle is planned to be 3 weeks. I was asked whether I would participate in an anti-nausea drug trial: the question is whether the oral administration of a new (but well-tested) drug is as effective as intravenous administration. I of course agreed to participate; not only do such trials further Science, but these trials usually involve additional tests (e.g., an EKG) that are normally not part of the therapy procedure. Doctors generally frown on unnecessary tests (cost, false positives), but I like being checked more thoroughly when my body is subjected to a major strain.

And after carboplatin? The anti-angiogenetic drug Avastin, approved for colo-rectal cancer, shows promise for brain tumors in recent trials. There must be a joke there about treatments for cancers of opposite ends of the continuum of organs… There are two problems. First, Avastin is not (yet?) approved for use with central nervous system tumors, and my HMO is known to be very hard nosed about not paying for unapproved drug uses. Avastin is one of the new obscenely expensive drugs. Second, existing tumors have hemorrhaged, sometimes fatally. My oncologist is in the process of getting approval from the HMO for treatment should it be recommended. I hope any decision about Avastin can be put off long enough that its effectiveness and the incidence of hemorrhages are better understood.

Thus today I had the experience that most cancer patients have of sitting in a large room full of specially designed easy chairs, hooked up to an IV drip. Other than my operations, I have generally laid on a bed while I was irradiated or scanned (Physics is your friend!). This was very different: it was strange having an IV drip a rather nasty chemical into my bloodstream (is Chemistry my friend?). Obviously, we hope that this treatment will do more damage to the tumors than to the rest of me!