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My wife is on Temodar but has only taken one cycle and we are only on day 19 of the 28 day cycle (she took the five pills on the first five days of the cycle). She took Kytril to avoid the nausea and to prevent potentially vomiting up the $440 pills (per pill!!). She did OK, just some minor constipation, tired/fatigued, etc. Has a rash righ now which we assume is caused by the Temodar (a low probability side-effect according to the information we got with the drug, about 8%). We see the doctor on Monday and if her blood counts are OK she will start the next cycle on Oct. 19th.
Sorry I can't give you any feedback on results. We are not expecting much, just trying to buy a little more time, as the studies so far have not shown great results for breast cancer mets. But it is our last hope and last possible treatment for my wife. She has "extensive" brain mets, "too numberous to count", in addition to some larger ones, and lots of edema (brain swelling). She had WBR in April, great response and had a very good MRI in June, but the mets came back with a vengence in August. A consult with a major cancer research center said steriotactic radiosurgery would do no good in her case with the extensive mets. We are now in deep trouble and my wife is not doing well at all; onc said it is time to talk to Hospice which we have (this is an onc who does not refer people to Hospice easily or early and is usually wildly optimistic and does not like admitting he can't do anymore). I only mention that so everyone won't flood me with e-mails of "hope" and how others have been told that and then were fine. My wife's cancer is very aggressive and fast growing and we are out of treatment options.
The advantages are that the Temodar appears to have less side effects than many of the other chemos and is the ONLY chemo that can really get through the blood/brain barrier so it is the only thing other than radiation that you can do for brain mets (other than the Decadron to keep the brain swelling down). The disadvantage is that it has not shown much response (but has shown some) for BC brain mets. Major side effects are supposed to be nausea, diahhrea, fatigue, and constipation. The drug insert that comes with it, of course, also says it causes every side effect imaginable!
Just as an aside, Temodar CAUSES breast cancer in mice and rats (male and female) if you can believe that! I started shaking the pills out into my wifes hand so that I wouldn't be exposed and have to start doing breast self-exams on myself and having mammograms! As you can see my normal sense of humor is still in there somewhere but horribly, horribly twisted and warped by all that is happening. I have already been through all of the stages of grief and back again to the beginning. Like most of the husbands out there, I wish it had been me who had cancer instead. My wife is only 55 years old and was supposed to bury me someday and be an old grey haired widow lady going to lunch with her friends.
Someone mentioned PattyZ and she is one of the few people I could find who had done the Temodar and she was kind enough to respond to me with information and concern. I don't think you will find a lot of people who have tried Temodar as it is still in the testing phases for BC brain mets. It has shown some promise in that if given along with WBR it did increase the response rate and amount of response to the radiation treatments.
I wish you the best of luck.
Larry
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