My chemo therapy regime has developed over a two year period. It began with six weeks of conformal radiation (five treatments per week) and concurrent Temodar (TMZ) chemotherapy (a pill) in March 2004. When taking Temodar each day, I followed a specific procedure, which began by eating dinner, then waiting 90 minutes to take 16 mg of Zofran (anti-nausea), and then taking the chemo pills. I then waited at least 30 minutes and went to bed.
The standard treatment is to stop the chemo for four weeks after radiation/chemo. I used this time to visit MD Anderson, Duke and UT Southwestern to obtain advice and input on where to go from here. Everyone agrees on the six weeks of radiation and chemo following surgery, but opinions are divergent beyond this. Different agents, such as Temodar, CCNU and CPT-11 are suggested in varying dosages, combinations and schedules. Additional meds, such as Celebrex, Accutane and Thalidomide are also recommended to create a "cocktail" mix. So I had a tough decision to make: which path to follow. I feared making the wrong choice and suffering the consequences.
As I prayed about what to do, and asked my wife and family what they thought, it occurred to me to ask gbm survivors what they had done. Long term survivors were not helpful here, because treatments have changed so much in the last 10 years. Turns out that all of the survivors I contacted in the 2-4 year range followed the same approach: two years of Temodar with possible add-ins. I therefore elected to go with the survivors and opt for a 5/23 Temodar plan, along with Celebrex, Accutane and Thalidomide. The 5/23 plan means that I took Temodar for five days at 400 mg/day, then stopped the chemo for 23 days. This first round of 5/23 Temodar began in May 2004. This four week cycle was repeated again in June, and then another MRI was performed.
After the 2nd round of 5/23 chemo, I switch to a 14/14 plan; 14 days of Temodar at 140 mg/day, then no Temodar for 14 days, based upon information suggesting that taking Temodar for a longer period of time at a lower dosage demonstrated increased efficacy over the 5/23 plan. A lower daily dosage of TMZ also has the benefit of eliminating the need for Zofran (at least for me), and the possible negative side effects to the digestive tract. I stayed on Temodar for more than 2 1/2 years.
As time went on, I have also modified the dosages other agents I am taking. The Thalidomide was almost immediately sacked, because it was aimed at the same tumor growth factors as Accutane. Not sure why this was initially missed by everyone, but I am most thankful that Dr. Virginia Stark-Vance caught this mistake. No sense in doubling up, especially given the side effects of Thalidomide. I dropped Celebrex in April 2005 due to persistent news stories reporting heart problems associated with this agent.
I am actually playing a game with myself during all of this chemo. For more than two years, I took Temodar on the 14/14 schedule without experiencing any nausea issues. Then, without warning and for no apparent reason, I began to occasionally vomit in the morning after taking Temodar the night before. But instead of resuming Zofran, I switched to anti-nausea med Kytril. I still experienced some constipation with the Kytril, but less than with Zofran. So here's the game. I can take an anti-nausea med, proceed with Temodar and eat as usual without any immediate consequences. But after a few days, my bowls complain that a brick wall is being built and must not be allowed to continue. So I stop the Kytril, or the chemo round ends, my digestive system resets after some effort, and I am good to go. But my stomach then begins to warn me when I start the next segment of chemo that I am going to throw up if I do not do something about this Temodar. So the cycle continues. It is a cat and mouse game, because I cannot risk a food intake problem via nausea, and I definitely cannot afford to tear up my GI tract either. Over time, by trial and error mostly, I learned to listen to my body, even how to anticipate issues. In short, how to balance the Temodar and Kytril, coupled with changes in diet (high fiber) to minimize the bad effects and enable the good effects.
I have also learned that by carefully staging the intake of Keppra and Temodar, I can have my medical cake and eat it too. That is, I can take Temodar without Kytril without nausea and without constipation. I just have to allow sufficient time between taking the Keppra and the Temodar, and then wait for 45 minutes or so before going to bed. Another agent that help with proper bowl functioning is Polythelene Glycol, which I take a few times each week, up to 14 grams per day. It is a powder I mix with juice.
Another facet to the game is the Accutane, a drug that tends to turn my face and ears tomato red sometimes. My skin peels and dries up on my arms and the back of my neck. I also get painful knots inside my nose. This agent was designed to treat acne, so these effects are not unexpected. I put up with the side effects because studies suggest that Accutane is efficacious when combined with Temodar, against tumors that express a certain growth factor receptor, which my tumor did. But as the clean MRIs continued, I felt it was low risk to cut the Accutane dosage to a minimal 40 mg/day in mid 2005.
This nice little system changed dramatically on 04 June 07 when the MRI showed a recurrance of the tumor. I immediately began Carboplatin chemo with Avastin. I tolerated these new meds reasonably well, the tumor was resolved over a period of time and as of 08 September 07, the tumor had completely vanished! Two more rounds of Carbo and Avastin were administered in October and November, and since the scans remained clean, I was able to return to bi-monthly MRIs and stop the chemo as of 12 November 2007.
