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Daddy just called… they’re doing chemo after all. I’m so tired of this. The information seems like it’s always garbled – Daddy garbles it. Daddy talked to Dr. O’Rourke last week about the latest CT scan. He told me that O’Rourke called it “slight” improvement. He told Mama (or Mama said he told her) that it was “significant” improvement. So Mama goes and tells all the Bowman and VA people that everything’s great and she has SIGNIFICANT improvement.

But she doesn’t. They went today, and O’Rourke is saying that when evaluating the shrinkage in the liver, but now there are nodules in the lungs, that equals “no improvement” – basically the good and bad balance each other resulting in “stable.”

Now O’Rourke just got two more chemo drugs approved and they’re starting them today, along with radiation on the bump on her head. But of course Mama and Daddy don’t remember the names of the drugs. Daddy said they’re a clinical trial, and when I mentioned that I would rather Mama not be O’Rourke’s guinea pig, he said “Even I know that clinical trial doesn’t actually mean it’s a clinical trial. They’ve already tested it, and now they just call it that.” Um, no. This is the medical community we’re talking about – if they call it a clinical trial, that indicates that it’s not one of the hard, fast, traditional drugs that are being used. I’m not saying that it’s necessarily a reason for freak-out, but it does need to be addressed.

Later…
So I just talked to Daddy. The chemo cocktail is Gemzar and Carboplatin. Gemzar once/week for 3 weeks, then 1 week off, and Carboplatin once every 28 days. From what I can tell, these are pretty big ones, but the triple-negative options pot just got a lot smaller.

Ok, so I’ve spent about 2 hours going through the message board. CalGal posted a really good article that’s basically a “glossary” of types of cancer treatments, and I listed the chemos that ladies on the message board mentioned. Flea mentioned in one of her posts that she’s triple-neg and she’s currently on her 9th chemo… I PM’ed her and ask what the 9 are. That’s very encouraging, because I thought Mama was down to maybe one more – Xeloda. But now I’m thinking that we’re in better shape than I initially thought..

Daddy told me that Mama’s freaking out because she thinks she’s almost out of options… and he was like “she’s not, right?” and I told him that the option pot just got a lot smaller and he seemed shocked. They really just aren’t learning that much about this disease that is potentially going to take Mama’s life.. it’s so foreign to me to just sit there and depend on the word of O’Rourke or whoever the flavor of the day is. I really think that Mama and Daddy need to make another appt with Twala… a standing weekly visit would be an excellent idea.

Drugs/treatments to research:
Aromasin – only for ER/PR +
Coumadin – prevents blood clots
Abraxane – part of the taxane family
TroVax – experimental vaccine. Applies to solid tumors where the 5T4 tumor antigen is present (does this apply to Mama?) Clinical trials were scheduled to begin in late 2006
Sutent – oral chemo
Gamma-Knife / Cyber-Knife
WBR (Whole Brain Radiation)

Carboplatin isn’t mentioned in the article, which surprises me… based on how often it pops up on the message board, I assumed that it was one of the more common ones.

I took my second happy pill today – I can’t even remember the name of it right now… I know it’s a stupid thing, but I’m actually taking Jennifer’s prescription… she has 4 refills left, and I’m just going to get them filled through her. If it seems ok, then I’ll just get Linda to write me another prescription. She’ll probably fuss at me for taking someone’s medication, but I think it’ll be fine… a happy pill’s a happy pill, and this one is supposedly even milder than Welbutrin. So I’m not going to worry too much about it.

I just looked it up… it’s called Lexapro.

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