July 2012/Dana Farber

This past Friday, July 6, Ken had an MRI and Neuro Exam with Dr. Mellinghoff at Sloan Kettering. We are happy to report that the MRI again was clear; no changes since surgery. So, the issue at hand (and the thing that Dr. M. says is "keeping him up at night") is what to do next. The standard (and what Ken did with his original tumor) is to "consolidate" treatments, and follow surgery with Chemo and Radiation. For this reccurrence, Ken has had the surgery, then took part in a clinical trial...but now what? we could try more chemo & radiation, or another trial, or simply do nothing until the tumor rears its ugly head again. Basically, Ken & Dr. M had chosen the latter approach, but upon further consideration, Dr. M. suggested we go see his colleague at Dana Farber in Boston. The purpose is to check out the clinical trials available at Dana Farber at this time, as well as get another opinion on our current course of action. Also, Dr. M. felt that our visit would "put us on the books" there, so if in the future Dana Farber can offer us a treatment that Sloan Kettering can't, Ken will already be established there as a patient. So yesterday we went off to Boston, to visit with Dr. Patrick Wen. I will attempt to make a brief synopsis of our visit...again, I am not a doctor so I am only relaying things to the best of my understanding...in a "nutshell": There are currently 3 clinical trials underway at Dana Farber that are open, and pertain to Grade 3 Astrocytomas. Unfortunately (or, actually, fortunately) Ken does not qualify for any of them at this time, due to the fact that he has no active tumor present at this time. While there are always cancer cells in his brain which will eventually re-form into another tumor, there is currently no visible tumor to work with. So Ken is in the very good position of not needing to really do anything until there is a change in his MRI. Dr. Wen seems to concur with Dr. M. that right now it is more beneficial to let Ken heal, and get stronger and that it may actually be detrimental to start him on chemo (such as Temodar) again because a) his tumor did not respond to treatment in February and b) it may render him ineligible for certain future treatments. Of the three trials that are currently open, the first two are Phase II trials. The first is a mollecular drug + Avastin, which may block angiogenesis (they are thought to cut off the tumor's blood supply) and may affect tumor stem cells. The Avastin blocks the blood vessels, but the tumor eventually builds up a resistance...so the second trial involves a drug that is used instead of Avastin, and is thought to block that resistance. The third trial is a drug that is thought to actually block the mollecular pathway (P13 Kinase inhibitor)? This shows promise, but is still in phase I,, which is the dosing phase. So they are still working on reaching an effective yet tolerable dose, which means that if Ken were to actually start now, he may be getting a lower dose of the drug that may not be as effective as later in the trial when they reach higher doses. However, this drug is made specifically for brain tumors so it is made to actually penetrate the brain, which most other drugs are specifically made not to do. There is also a timing issue, because they are operating the trial along with other institutions, and are only allowed 3 patients at a time when it is their "turn" to add people. So they would have to have an opening available at the exact time that Ken qualifies for it. There is SO MUCH more to it that was discussed, but this was the gist of it. Dr. Wen also concurred with Dr. M. that Ken should not be driving at this time, which is of course, a major blow for Ken. He is so sick of tagging along with me everywhere (he clearly does not find Target as exciting as I do) and is eager for some freedom. Also, Dr. Wen does feel that in his experience these tumors do get a little stronger each time, and another recurrence, while it could take years, is more likely to happen in months, not years. We are all hopeful, though, that the clinical trial that Ken participated in may have done something to prevent that from happening. Only time will tell...