Diary of a Brain Tumor Patient's Wife

Sept. 30, 1999

Renette Davis

We saw Dr. Nicholas this afternoon, and he said the tumor is larger. The official radiology report isn't done yet. Apparently they can't find the films from the last MRI to make a comparison. Dr. Nicholas said they would have to print new ones. Luckily, we had taken our copies for him to look at today. When I asked Dr. Nicholas what the size was now, he said it was hard to measure, but it's big and diffused.

There are several options for treatment at this point. I'm going to try to list them with their pros and cons here, partly for your information and partly because writing things down like this helps me to think things through. Ultimately it's going to be Paul's decision, but I told him I would let him know my preference, once I decide what that is. Dr. Nicholas would like us to let him know what we decide by the first of next week.

There are 2 options for further conventional treatment which Paul could try. They are Carboplatin or Tamoxifin.

Carboplatin is a chemotherapy given every 3 or 4 weeks by IV. The side effects are similar to the PCV chemotherapy that Paul had. Blood counts are likely to go down and he is likely to experience nausea. It seldom shrinks the tumor, but could stop growth for several months.

Tamoxifin is used in low doses to treat breast cancer. For brain tumors, they use 10 times the breast cancer dose, which would be about 12 large pills per day. It doesn't affect blood counts but it could make Paul feel unsteady and affect his balance. Again it could stop tumor growth for several months.

There are also 2 possibilities for clinical trials. Both are phase 1 trials, which as I understand it means the drug is given to a limited number of patients, in increasing dosages, to determine if it is safe, what kind of side effects it may have, and whether it appears to be helpful. One is BCNU combined with O6BG and the other is CPT-11 combined with Taxol. Either one would be administered at the U of C.

BCNU is related to CCNU, which is the pill that Paul took once a month as part of the PCV chemotherapy, and was the primary cause of his low blood counts. O6BG is a drug that is used to help overcome tumor resistance to chemotherapy. They are both given by IV every 6 weeks. The first time he would be in the hospital 2 nights and after that it would be on an out-patient basis. Side effects are likely to be low blood counts.

This may not actually be a possibility because the first opening that they have is Oct. 22, and Dr. Nicholas doesn't want to wait that long to begin treatment. There is a possibility of an opening on Oct. 6 (apparently someone hasn't decided yet whether they're going to participate), so Paul may be able to get in then. They have already decided the optimum dose to give, so if Paul got in this one, it would actually be like being in a phase 2 trial.

CPT-11 and Taxol are both being used for other cancers. (A brain tumor newsletter that I have says CPT-11 has been effective in colon cancer and is now being tested for brain tumors. I don't know what Taxol has been used for.) They are both given by IV also. Dr. Nicholas didn't know how often. Side effects are likely to be low blood counts. Dr. Nicholas has to check first to see what dosage they are at in the trial. They know it takes a higher dose for brain tumors, and they may not be up to that dosage yet, so it's possible it may not make sense for Paul to be in this one.

Dr. Nicholas had mentioned earlier that we might be able to petition to get Paul into the clinical trial of thalidomide for breast cancer at the U of C, but today he said they wouldn't accept brain tumor patients. Apparently he tried to get another one of his patients in and couldn't. He is, however, trying to get access to a clinical trial using thalidomide for brain tumors. He doesn't know how soon that might happen. He was supposed to hear back from someone today about it. Thalidomide is the drug that caused all of the birth defects in the 1950's. It's an anti-angiogenetic drug and the theory is that it would prevent the tumor from forming new blood vessels, which would prevent it from getting nourishment.

Dr. Nicholas had also mentioned earlier a clinical trial of temazolomide at Northwestern. The problem with it is that the medicine is free, but all of the doctor visits, MRI's, treatment if there are any problems, etc., are the patient's responsibility. He said we could ask Paul's primary physician if he would put in a referral for the U of C health plan to cover it, but it didn't sound to me like he thought the higher ups would approve it. I doubt if HMO Illinois would approve it either, since their contract is with U of I instead of Northwestern.

There are also clinical trials of thalidomide for brain tumors in Boston and New York which I have investigated, but Paul doesn't think he wants to do anything like that. Dr. Nicholas agreed that it would be awfully exhausting to try to travel like that. I think we've pretty much decided that if we go for a clinical trial we'll pick one at the U of C.

I guess the big question at this point is do we go with a known drug that may stop tumor growth for a couple of months but is unlikely to shrink the tumor, or do we go with an unknown which may shrink the tumor, but may also do nothing. I think at this point, I'm leaning toward a clinical trial in the hopes that it will shrink the tumor and alleviate some of Paul's symptoms. I still have a lot of thinking and praying to do though before I decide for sure what my preference is. I'm sure you will all be praying too that we will make the best decision.

Continue to: Oct. 2, 1998

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Created: May 31, 1999
Last updated: July 18, 2010