They had another appointment with Dr. Hu today and maintenance chemotherapy is now scheduled for May 28th, barring unforeseen problems with the next lab test on May 22nd. Maintenance chemo will involve 140 mg of Temodar a day for five days, followed by 23 days off. The number of rounds is not yet known, but we understand some people stay on this type of schedule for years. The 140 is a lower dose than the 180 Steve took daily for six weeks before and it is lower than the standard maintenance dose. If he tolerates it well, they will increase the dose for the next round. They are starting with the lower dose because Steve had so much nausea and kidney and platelet involvement before, they are trying to keep the maintenance schedule from being so hard on him.
In anticipation of Steve's body's reactions to the chemo, they have a plan to help. He is going to double the Zofran and resume Compazine and add a third anti-nausea medication (Terry didn't remember the name during our conversation). Then because all of this causes bad constipation, Steve will also be increasing his medications and fiber to try to help that end of things.
Terry had a list of questions to ask Dr. Hu about clinical trials that might help Steve fight this battle. Dr. Hu explained that there currently are not any trials accepting patients in his situation.... either they are full or are not for his stage of treatment. There are several trials for when the tumor recurs since, unfortunately, they almost always recur. They discussed one trial at USC (boo, hisss because it's rival to our UCLA, hehe) that is for glioblastoma tumors with a specific genetic makeup, called epidermal growth factor variant 111. They plan to send 4 microns of Steve's tumor to USC to see if it is one of the 30% of tumors with this EDGFv111. If Steve's tumor has this makeup then he can participate in the trial whenever he has a new tumor growth discovered. It's planning ahead just in case it's needed and his tumor qualifies. For any of you interested: http://clinicaltrials.gov/ct2/show/NCT01498328?term=usc+and+gbm&rank=5
Steve seems to be doing well and feeling good. He still takes Zofran twice a day because of nausea and also has to take 200 mg Colace and 3 Citricel tables twice a day to help keep his system moving. He continues to work full time and he has resumed some family activities like driving the boys to their friends' houses. He's still not 100% due to some fatigue but he's glad to be able to be involved again. Let's hope the maintenance chemo doesn't knock him back much.
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