Diary of a Brain Tumor Patient's Wife

Oct. 8, 1998

Renette Davis

It looks like Paul will be entering a clinical trial at the U of C for CPT-11 in combination with cyclosporin. None of the trials that Dr. Nicholas had mentioned to us last week worked out, but he said he thought this one made sense for Paul.

CPT-11 is a drug that has just been approved by the FDA for colon cancer. They know that brain tumor patients need a higher dose, possibly because of the anti-convulsants that they take. Cyclosporin is the drug that is given for organ transplants, and they believe that it will help push the level of CPT-11 up.

Paul has to be on phenobarbitol as the anti-convulsant medication for the trial, so Dr. Nicholas started him on that yesterday. He will gradually wean off the tegretol. (Paul has been on phenobarbitol before. Dr. Ro had switched him from tegretol to phenobarbitol when his white counts got so low because tegretol can also contribute to low white counts. Then when the chemotherapy was done, Dr. Nicholas switched him back to tegretol, because we thought phenobarbitol might be contributing toward slowing of his mental processes. Now he's switching back to phenobarbitol because the clinical trial protocol requires it.)

He will get the CPT-11 and cyclosporin by IV injection. His first treatment will probably be Oct. 21. He will stay in the hospital overnight, so they can monitor everything closely. After that, it will be on an out-patient basis. The trial lasts 10 weeks. He will get an injection every week for 4 weeks, then he'll get 2 weeks off, they he'll get another injection every week for 4 weeks.

This is a phase 1 trial here at U of C, but it is already a phase 2 trial other places, which means they already know the optimum dose to give and are now testing to see if it appears to be effective. If it doesn't appear to be effective, Dr. Nicholas said Paul could then try something else. He said the hope is that the tumor will shrink and Paul will regain some of the function that he has lost.

Dr. Nicholas also increased (actually doubled) Paul's dose of decadron because Paul has been having headaches and has been feeling a little dizzy at times.

Yesterday we also saw the doctor in psychiatry for a follow-up of the neuro-psych evaluation that Paul had. Basically the tests showed that Paul's comprehension is ok, his naming or wordfinding is severely affected, his reading and writing are affected, his non-verbal functions are still above average, his memory is average to low average, and his right hand is worse than his left in motor functions. Everything is basically what you would expect for a tumor in the left temporal lobe.

The psychiatriast is putting in a referral for us to see a cognitive therapist. This is someone who has some expertise with brain impairements. She will help us come up with ideas for enhancing communication as well as help us deal with the every day stresses & emotional aspects. Paul wasn't too keen on the idea, but I think it would be very helpful and have asked him to do it for me.

Continue to: Oct. 21, 1998

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Created: May 31, 1999
Last updated: July 20, 2010