Steve reporting again:
As I mentioned earlier, Erin and I went to visit the Neurology department at Kaiser in Sacramento this morning. There is one neuro-oncology specialist on the team, Dr. Lallana, whom Erin had met a couple of years ago.
Apparently, Erin’s scans were already a subject of discussion as Dr. Chen, the radio-oncologist who had reported via email a few days ago, had already called Dr. Lallana asking that they present the results at the next "Tumor Board" meeting.
The essence of the discussion today was that (and I am paraphrasing here) "doctors aren’t wrong very often, but if we are we like to learn about it like this." Basically, every statistic about GBM indicated that the mass they saw in August of 2011 should have been recurrent tumor, but it simply wasn’t. He said situations like this happen from time to time, but he only hears about them every couple of years.
Erin and I got to see the images for the first time. It isn’t as if there is a brain with a clean space on one side. Rather there is quite a bit of noise in there. There is scarring, spots of residual radiation necrosis, and basically a pretty damaged area but nothing that looks like a solid mass or tumor.
His suggestion is to keep an eye on it and go back to a regular schedule of MRIs every six months. He said the new spots on the right side were concerning and should be watched. There is no way to know for sure what they are without operating and that isn’t a reasonable course of action.
One interesting tidbit came when I asked about her clinical trial and whether the drugs she received there may explain her current condition. He said that it’s unlikely that Avastin will be approved for initial onset GBM because the trials like Erin’s showed very little effectiveness, if any. The British health service, however, did recently approve it for initial use, so who knows… However, the Tarceva she received does appear to have some benefit for a very small subset of patients with specific genetic markers in their tumor. It’s possible that Erin may have benefited from this, though genetic testing of her tumor wasn’t done as far as he knows.
I asked about her current quality of life and asked if we could get her into physical and speech therapy to see if we can help make her more comfortable. He agreed and entered the order into their computer.
On our way out of the parking lot… literally ten minutes later, the phone rang and it was Kaiser PT down the street wanting to schedule a visit. They had an opening an hour later, so we took the appointment. In the meantime we got some lunch and stopped by Kaiser member services to order a CD-ROM of the scans to send to UCSF per their request.
The therapist was great with Erin. She is starting with a focus on her walking and it is clear that while she can move her leg she has no ability move anything below the knee. As a result, she is at risk of falling now. She gave her an exercise to do to help strengthen and stretch the muscles that seem to be causing Erin pain now. In a couple of weeks we have a follow-up appointment (and a chance to talk to the speech therapist) where they may give her a brace for her right foot to help stabilize her more.
Erin was completely wiped out from the day and went to bed as soon as we got home.
So, basically, we are back where we’ve been. She is seemingly better for now but still disabled from the tumor and radiation. We are uncertain about when GBM will return but the doctors say that statistically speaking it always does. It could be months or decades. The goal now is to get out of "hospice" mode and get into treatment for her disabilities to see if she can have a better time.