And another brain tumor...

To recap: On 7/6/2011, we found some contrast enhancement in the bi-monthly MRI images where GBM number 1 and GBM number2 had been located on my right parietal lobe, which the tumor board at UCSF concluded was most likely a treatment effect (see http://www.minofreund.org/2011/07/sitting-on-pins-and-needles.html). Treatment effect includes immune response to the HSPP96-vaccine and delayed effects to chemotherapy (temodar) as well as the high-energy radiation at Stanford, which I received in March to April of 2010, not to mention the 16 or so CT scans. So we waited for another MRI scan on 8/4/2011to learn more about my status. “Tumor or no tumor?” was the question. To answer that question there seems to be only a very limited set of non-invasive tools considered at UCSF:

1. Contrast enhancement in MRI images.

2. Perfusion studies, which measure blood flow.

3. MRI spectroscopy,

4. No PET scans.

The results on 8/4 were not clear again, but we all observed two issues: First, some behavioral changes in me, including my tendency to collapse my left ankle regularly. i.e. neurological symptoms. I switched to an air cast ankle brace, to prevent falling. Second: we saw an increase in size of whatever was showing up as a contrast enhancement on the MRI, and more edema. 

To be safe, we decided if the next MRI scheduled then for Friday 8/19/11 should not show any reduction in the mass-effect, Andy Parsa from UCSF would open my skull again, to clean out whatever was in there.

On the afternoon of 8/19, we all learned from my neuro-oncologist Jenny Clarke at UCSF the hard truth: The mass effect had grown from 2.5 cm on 7/6 to 3.5 cm on 8/4 to 4.2cm on 8/19 in the largest dimension. I was quite reassured and at total peace with myself – whatever it was it had to come out, and I quickly agreed on surgery the next Monday (8/22).

Thus, on Monday 8/22 I was scheduled for my third brain tumor operation to begin at ~10am, my second resection under Andy Parsa’s skilled hands at UCSF.

Even before the operation, I was starting to have massive headaches that no reasonable dose of Tylenol could solve. But not to worry, we planned for that possibility. I checked myself into the ER at UCSF on Sunday evening, and a large dose of decadron and some morphine gave me instantaneous  relief . During the night, I transferred to the neuro acute care on the eighth floor of Long hospital at UCSF. On Monday morning, I awoke early, assuming the surgery would start at 9-10am. I do not remember anything about the operation, except for Andy’s face and the presence of Dr.James Caldwell, a Scottish gentleman and the anesthesiologist who attended my second surgery in 2010.

The operation took from ~ 1pm until 6pm, after which I was transferred to the Neuro-ICU. I only remember that I felt extremely well cared for by the attending doctors. On Tuesday morning 8/23, I transferred back to the neuro acute care, ironically in the same room I had after my surgery in February 2010. The post-op MRI seems to be extremely clean, just showing a clean cavity, no edema, and no evidence for residual tumor. It was the best operation I ever had. I continued to have some mild headaches until Thursday early am. During that time, my parents stayed at a hotel near UCSF.

The sad news about brain tumors like GBM is that they are extremely resilient, and hard to detect if they are small enough. In addition, there is no simple accepted blood test to check for brain tumors. Companies are pouring billions of dollars into methods to predict failure of a cancer treatment, but the gold standard remains the pathologist report from the actual tissue, which in this my case turned out to be a combination of treatment effect and seemingly one of the most aggressive and difficult to treat forms of GBM.

UCSF does not offer in-patient rehabilitation, so we had to find another facility. The social worker at UCSF had changed. The old one (Jennifer) had been disastrous, while the new one was excellent, and she gave us a broad choice of facilities. We ended up choosing the new El Camino in-patient rehabilitation facility in Los Gatos, where I checked in on Friday evening (8/26/2011). Great place, infinitely better than the Bad-Samaritan Hospital also in Los Gatos, where I ended up last year.

I will dedicate the next few weeks of my time foremost to regain the full function of my body. We also have to quickly consider future treatment modalities, before another potentially deadly GBM creeps up…