Linda661 Posted April 19, 2006 Share Posted April 19, 2006 I'll start with the questions, so folks could perhaps respond without having to read my vent novel: 1. Am I correct that there really is no "one best" course of treatment -- i.e. chemo alone is OK, radiation alone is OK and any combo in between or none....including length of time between treatments? That sound treatment is solely based on the individual and their progress? And that one or the other can be returned to, sometimes multiple times, over the course of treatment? 2. Am I correct to expect good coordination between the medical onc. and the radiation physician within that treatment plan or is it normal for the two to act rather independent of each other? OK, now here's what's been going on to spark this: Mom reacted the worst she ever has after her 10th or 11th cycle of chemo last week. Up to this point, she has done really super for getting weekly chemo. Last week, she suddenly developed a whole host of side effects (hot/cold flashes, tingling/burning in extremeties, unstoppable "runs" [i'm talking on the bedside commode every 15 minutes or so], unceasing fatigue, and a few more). We have been on-hold beginning her radiation until she can recover from a fall she took several weeks ago, but weekly chemo has continued..... The "runs" effect was the worst and over the course of the last week her nurses at the facility she stays at have tried to get better meds to control it from the onc. to no avail (they got no response from the onc. last Friday or on Monday of this week) -- she's got a standing order for Lomotil as needed, but it does nothing to stop it. She also had just come off of Flagyl for C-diff last Wednesday and all the "runs" started last Thursday. She's lost 8 pounds so far and it is nearly impossible to keep her well-hydrated at this point. I started out writing many more details about my vent that are important to my questions, but it's just too long to write in here. Summary is, I got an emergency order for another C-diff test and an order to go back on Flagyl for now (it worked before). After much runaround yesterday, I've got new visits scheduled next week for onc. and radiation re-simm......long story.....trying to get mom back on a course that she can endure, given what she's doing now and where she needs to go next (based on what she's wanted). If I have to, I want to consider whether she really needs to continue the chemo at all right now, when it's the radiation that is gonna tackle that tumour the best at the moment. The nurses at the nursing facility have told me that they think she'll need something stronger than Flagyl and they had tried to request it before.......they are happy as big cheerleaders when I told them that if the Flagyl doesn't work, and they get no immediate response from the onc., they are to call me and I will take care of it (and ooooh, I will, you have no idea how I will) -- I have had enough of this runaround and the nurses just grinned big when they saw me in my barracuda personality, just p*ssed off, at this garbage!!!!! Let's just say that I got enough attention yesterday that the onc. himself called me and I didn't have to wait very long for that call either -- wouldn't you just love to know what I said to his staff and then him to warrant that???? This last week was the first time I have ever heard or seen my mom seriously discouraged and wondering whether she can or wants to endure this. I refuse to let the major screw-ups in the system break her spirit or diminish her chances of getting what she hopes to get out of her treatment!!!!! Hopefully I related enough; ooh there's so much more too.....if I didn't make enough sense to anything you'd like to say, I'll try to respond along the way. Thanks, Linda Quote Link to comment Share on other sites More sharing options...
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