For Those Interested in the Toca 511 Trial

Update 12-05-2015

Well, Friends, it's been a challenge. About a month ago, Chance had a severe seizure while at the gym and ended up in the hospital. Fortunately, we got him transferred to UCSF but a lot of problems resulted.

They increased his Decadron to 16 mg per day and his Keppra to 2500. It was scary. Dr. Taylor wanted him to go on Avastin because the 16 mg Decadron was not sustainable, so two weeks ago, Chance has his first Avastin infusion.

Stephen helped me add DCA and Honokoil, and change the cannabis from THC:CBD to CBD only. We looked to add Chloroquine but I couldn't get a prescription. When I asked Dr. Taylor for a prescription, she resisted because of possible liver toxicity. Stephen countered but in researching, we found Chloroquine sometimes caused vision problems, and that was a side effect we couldn't consider.

Chance's vision has been worsening. For a short time after the last seizure, it was vision and comprehension (left temporal tumor), but ultimately it was blurry vision, both eyes. He loves to read. This was a big loss. We visited a neuro-opthamologist last Wednesday. He had a very kind manner, but broke the news that there was nothing he could do. A field of vision test revealed he had lost a lot of vision on the right side, even though it didn't appear to Chance as right-side loss only. The doctor said it was a function of the tumor. If the tumor gets smaller, his vision could improve.

I was at the bottom of the barrel. Chance had an MRI scheduled yesterday and I was more anxious than ever. Chance, however, couldn't wait for the results - and knew they would be positive. Chance has been working with an acupuncturist (and amazing healer) for five or six weeks. He sees her once a week and it is the high point of his week. She told him this MRI would show improvement, but the next one would show vast improvement. I wanted to believe her, of course, but it seemed nothing was really making his symptoms better.

Yesterday was the longest day. He was in the MRI department over two hours and then there was a long delay before we saw Dr. Taylor. When she called us in, Chance said, "I know why you took so long to call us in. You couldn't find my tumor!" She laughed and said, "Well, not exactly, but your scan was much improved!"

I told Stephen how amazing it was that a few words can change EVERYTHING!

Dr. Taylor believes the Avastin and Toca 5-FC are working perfectly. Chance believes he and his acupuncturist are working perfectly. For me, who cares?! We have improvement the first time since his September scan.

Last night he began his second round of the 399 Toca 5-FC pills. After being at UCSF three times this week, we don't have to return until after Christmas! Our Holidays are looking very happy indeed.

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Original Post 10-30-2015

Hi,
I mentioned Chance was enrolled in this study earlier, but I thought I would create a Toca 511 thread so I can post his progress.

UCSF identifies the study in this manner: CC#09102 A Phase 1 Ascending Dose Trial of the Safety and Tolerability of Toca 511 in Patients with Recurrent High Grade Glioma.

General information: Toca 511 is a live virus that has been built to carry a gene into cancer cells. This process is called gene transfer. This gene carries instructions that cause the cancer cells to turn the flucytosine (5-FC) into a chemical that may kill cancer cells.

Chance was enrolled in Cohort 7 - the first cohort to receive the virus intravenously. Earlier cohorts required surgery to place the virus in the tumor bed. Chance had an infusion each day for three days (infusion took about five minutes, then you rest in place for one hour before release) on September 28, 29, 30, 2015.

He had no side effects of any kind from the virus infusions.

Last Monday, Chance was supposed to start the 5-FC pills - the next step in the process. Unfortunately he had a seizure at the gym on Sunday night and ended up in a local hospital followed by transfer to UCSF.  He was released on Wednesday, then we returned today to start the 5-FC process.

When we talked about it originally, UCSF staffers said he would have to take a lot of pills during the process. Chance laughed and said it couldn't be more than his mom had him taking already, could it? Today we found out. These are big white pills, and he is to take 19 of them three times a day for seven days (399 pills!). He does this once every six weeks for three rounds. He will get an MRI every six weeks. If the 5-FC is working as it should, he can join a continuation arm of the study (which was a very big selling point for us).

It will be six weeks until we can determine if the 5-FC is doing its job. I'll be back then to update.

(Just for further information, this trial is being offered at a number of sites. They are currently enrolling Cohort #8 for surgical injection into tumor bed. Cohort #9 is the next one to inject intravenously. This time it will be given over five days instead of three.)