Diary of a Brain Tumor Patient's Wife

Oct. 16, 1997

Renette Davis

Paul had his MRI yesterday morning and they let us take a copy of the films with us since we had an appointment at U of C in the afternoon. Paul's friend, who's a radiologist, and another doctor, who's a neuro-radiologist, looked at the films with us. Basically, the tumor is larger. It's now 4.2 cm. x 3 cm. x 3 cm up & down.

They said you can't tell by looking at the films how much of the area is live tumor and how much is necrosis (dead tissue). It's possible there was growth first and then response to treatment. The edema (swelling) is about the same so the effect on the surrounding tissue is about the same.

The tumor hasn't spread to any other areas of the brain. They said there's not much pressure on the midbrain and it's not likely to go across.

We then saw Dr. Kelly Nicholas later in the afternoon. He said his impression is that the tumor is growing and he thinks we should treat it more aggressively with chemotherapy. He suggested several things we might try.

One is called PCV. It's a combination of 3 drugs - procarbazine (which is Matulane that Paul's taking now), CCNU, and Vincristine. (I'm sure I'm spelling these all wrong.) The procarbazine would be a lower dose than what he's taking now so he wouldn't have the 30-day nausea and restriction from eating cheese, etc. He said we could switch to PCV right now even though Paul has started the next round of Matulane treatment, so I'm going to call the regular oncologist today to see what he says.

Another possibility for treatment would be BCNU. It's given once every 6 weeks and is an IV infusion. There is often nausea the first day, but it can be effectively blocked with medication. He mentioned a couple of other drugs that we might also try if we switch to PCV and that's not effective. They are carboplatinum or high dose tomoxifin. He didn't give any details on those except that tomoxifin is used in breast cancer and Paul would get a higher dose.

At this point he doesn't think there are any clinical trials that we should investigate. He said if any of the experimental treatments appeared to be superior, he would encourage us to try them, but that's not the case. There is one drug that may still be in clinical trial at Northwestern. It's called Temazolamide. If it is still in clinical trial, Paul doesn't qualify yet because you have to be 12 weeks out from radiation to try it. He said if it's not in clinical trial any more and if our HMO won't pay for it, he couldn't recommend it because it's very expensive and it's not a wonder drug.

I asked him about Hydrazine Sulfate. He said it's getting a lot of press lately and he doesn't know why. It's basically the same mechanism as procarbazine, which is what Paul's getting now, and he wouldn't recommend trying it.

I also asked him about shark's cartiledge, and he said he wouldn't take it. He said it's very popular but it hasn't been shown to help. He has patients who want to take it and he doesn't discourage them because he thinks that belief plays a big role. Basically if something isn't detrimental, he doesn't discourage people from trying it.

He spent a lot of time with us and gave Paul a very thorough neurological exam. He said that except for the fancy haircut, you wouldn't even know that Paul has a brain tumor.

I asked him what he would expect the added chemotherapy to do for Paul and he said the goal is to slow or stop the tumor growth. He said the benefits of chemotherapy are modest with glioblastoma multiforme. If I understood him correctly, Paul's age (less than 55) and Karnovsky status (how well he is doing) probably have a greater effect than chemotherapy on prognosis.

He kept the slides from the biopsy to show to the pathology lab today, just to confirm that it actually is a glioblastoma multiforme. He said it looks and behaves like one, so he doesn't really doubt that it is.

Thanks for all your prayers and support. We're doing ok (most of the time, that is.) I find that a little thing can trigger tears and then sometimes it's way out of proportion to the event that triggered it, but I'm sure it's because my emotions are just barely under control and when something sets it off it's like opening a dam.

Continue to: Oct. 19, 1997

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