Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 Donna, <<no evidence of disease outside of the liver! The bad news is they cannot do surgery right now because there are more than 5 tumors in the left lobe>> Do you mean that new tumors grew in the left lobe (hence Camptosar failed?), or is this a conclusion from a scan on " their machine " (as opposed to whereever the scans were previously done?) Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 I believe it was just a clarification of the enhanced scan over the other CT. I got the impression there was no growth since the scans from May 3rd. They brought Dr. Curley back in to examine it (knowing it was pretty borderline) and he just didn't feel he could successfully RFA that much tumor burden in that lobe. They did say the size was certainly approachable ....just too many (5 or more). We will now hope for enough shrinkage to get rid of a few of the smallest ones in the left lobe and then they would do it. And you were totally right on your last response to me ......... we need to cross these bridges one at a time. Sometimes it's hard not to get all worked up and get ahead of ourselves!! :-) OK ....deep breath and back to one step at a time. ;-) Just set Rick and appointment with the Highlands Oncology Group (where the Erbitux trial is available) for June 30th. That was the first available appointment with the Doc we wanted. We will go ahead an have a port put in before that so that we're ready to go when they are. One small setback ........that trial is on " hold " (whatever that means). But she said it may open up in the next couple weeks. She mentioned another trial that is open and similar, but involved Novartis CPTK787 and is a double-blind, randomized, placebo-controlled, phase III study. Not sure we're interested in that one ...... we'll just have to go up there and sit down with them and discuss all this. In the mean time.....the clock is ticking and Rick hasn't had chemo in four weeks. He's anxious to get hooked back up to the juice! There's a different attitude,huh? ;-) Thanks, Donna S. > Donna, > > <<no evidence of disease outside of the liver! The bad news is they > cannot do surgery right now because there are more than 5 tumors in > the left lobe>> > > Do you mean that new tumors grew in the left lobe (hence Camptosar > failed?), or is this a conclusion from a scan on " their machine " (as > opposed to whereever the scans were previously done?) > > Best, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2003 Report Share Posted June 17, 2003 <<I got the impression there was no growth since the scans from May 3rd.>> Good! The reason I was asking is because I think there might be a difference in response to " second line " FOLFOX therapy for someone FAILING first line Camptosar (definition: tumors increase in size by a certain percent), vs. someone having STABLE DISEASE with first line Camptosar. Seems to me that the second line Oxaliplatin trial results (9% response rate) were for the patient population of Camptosar failures, not " stable diseases " . So maybe there is a better chance than 9% for response (further tumor shrinkage) for Rick, since I don't think he would be considered an official " Camptosar failure " . I don't know if this has been studied! Best, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 Good point! Now that you mention it, that brings up another question. Since Rick was/is still " stable " and tumors are not growing, then he has not failed the CPT-11 combo yet. Why would we need to switch to FOLFOX right now instead of capitalizing on whatever additional time we could get from his current regimen? I can only assume it's because we don't want to let the tumors start growing and get farther from the goal ....... and that we can possibly prevent that by starting the new regimen now. Sound close? ;-) Thanks for all your insight ........ it has helped. After discussing everything last night, I think Rick has decided to skip the trial right now and go for the " sure thing " combo of Oxaliplatin/Xeloda/LV. We're working on getting the port implanted ASAP and ready to get rolling again. Donna S. > <<I got the impression there was no growth since the scans from May > 3rd.>> > > Good! > > The reason I was asking is because I think there might be a > difference in response to " second line " FOLFOX therapy for someone > FAILING first line Camptosar (definition: tumors increase in size by > a certain percent), vs. someone having STABLE DISEASE with first line > Camptosar. > > Seems to me that the second line Oxaliplatin trial results (9% > response rate) were for the patient population of Camptosar failures, > not " stable diseases " . > > So maybe there is a better chance than 9% for response (further tumor > shrinkage) for Rick, since I don't think he would be considered an > official " Camptosar failure " . I don't know if this has been studied! > > Best, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 Hi Donna, <<Now that you mention it, that brings up another question. Since Rick was/is still " stable " and tumors are not growing, then he has not failed the CPT-11 combo yet. Why would we need to switch to FOLFOX right now instead of capitalizing on whatever additional time we could get from his current regimen? I can only assume it's because we don't want to let the tumors start growing and get farther from the goal ....... and that we can possibly prevent that by starting the new regimen now. Sound close?>> Well, maybe.... You should specifically ask about this, but if I had to guess I would say that the reason for switching is really in hopes of shrinking the tumors in the left lobe to become eligible for the liver resection/RFA. Were that NOT the goal, there would indeed be no reason to stop a therapy which has (so far) proven itself able to keep things stable. And, horror of horrors, there is always the possibility that Camptosar CAN at present keep things stable, but Oxaliplatin could not (!). There is always an element of risk in going from any " known " to " unknown " therapy that the " unknown " will not work as well. Unfortunately, there are NEVER any guarantees about anything when it comes to cancer. Anyway, it seemed to me from reviewing different clinical trial results that in terms of actually shrinking tumors, Oxaliplatin has a higher percentage of responders (tumors shrunk by at least 50%) than Camptosar. I think the numbers are something like 35% of patients on Camptosar get a Partial/Complete response, and 50% of patients on Oxaliplatin get a Partial/Complete response. Could Lin be reasoning that Rick has gotten all the shrinkage he's going to out of the Camptosar, but he might be able to get more on a different regimen (Oxaliplatin)? EXAMPLE: ******************************************************************** Oxaliplatin http://www.ccalliance.org/news/treatment/ctcnews/oxaliplatin.html [snip] In Switzerland, 200 patients with metastatic cancer of the colon or rectum received 1 of 2 therapies: either 5-fluorouracil/leucovorin or 5-fluorouracil/leucovorin plus oxaliplatin. The group receiving the oxaliplatin combination had a 53% response rate, compared with only 16% in the those who did not receive oxaliplatin Camptosar http://www.pharmaciaoncology.com/products.asp?CType=3 & PType=2 2 trials which were basis of Camptosar approval showed only 39% and 35% response rates, respectively. ******************************************************************** So...I think Lin is really (at least in the back of his mind, if not explicitly stated) thinking in terms of " restaging " for surgery (and that's good, because it means he hasn't " given up " on Rick's case). If he waits until the Camptosar stops working, then as you know chances are very low that Oxaliplatin could shrink stuff further (about 9%). If Rick switched to Oxal now and tumors grow rather than remain stable (i.e. Oxal just " doesn't work " for him), then little is lost as they would simply switch back to Camptosar on the next cycle. Seems to me there isn't much downside to giving it a try. Best Wishes, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2003 Report Share Posted June 18, 2003 Thanks .......... it makes sense to me. We will be sure to ask about this at our next appointment (which is with a new Oncologist at the facility where the Clinical Trials are being conducted) on June 30th. We have an appointment with our local surgeon the same day ....ready to get that port installed! :-) How do things stand with you since your last report ..... any new news? Are you going to start the Xeloda? Thanks, Donna S. > Hi Donna, > > <<Now that you mention it, that brings up another question. Since > Rick was/is still " stable " and tumors are not growing, then he has > not failed the CPT-11 combo yet. Why would we need to switch to > FOLFOX right now instead of capitalizing on whatever additional time > we could get from his current regimen? I can only assume it's > because we don't want to let the tumors start growing and get farther > from the goal ....... and that we can possibly prevent that by > starting the new regimen now. Sound close?>> > > Well, maybe.... > > You should specifically ask about this, but if I had to guess I would > say that the reason for switching is really in hopes of shrinking the > tumors in the left lobe to become eligible for the liver > resection/RFA. Were that NOT the goal, there would indeed be no > reason to stop a therapy which has (so far) proven itself able to > keep things stable. And, horror of horrors, there is always the > possibility that Camptosar CAN at present keep things stable, but > Oxaliplatin could not (!). There is always an element of risk in > going from any " known " to " unknown " therapy that the " unknown " will > not work as well. Unfortunately, there are NEVER any guarantees about > anything when it comes to cancer. > > Anyway, it seemed to me from reviewing different clinical trial > results that in terms of actually shrinking tumors, Oxaliplatin has a > higher percentage of responders (tumors shrunk by at least 50%) than > Camptosar. I think the numbers are something like 35% of patients on > Camptosar get a Partial/Complete response, and 50% of patients on > Oxaliplatin get a Partial/Complete response. Could Lin be reasoning > that Rick has gotten all the shrinkage he's going to out of the > Camptosar, but he might be able to get more on a different regimen > (Oxaliplatin)? > > EXAMPLE: > > ******************************************************************** > Oxaliplatin > http://www.ccalliance.org/news/treatment/ctcnews/oxaliplatin.html > > [snip] > In Switzerland, 200 patients with metastatic cancer of the colon or > rectum received 1 of 2 therapies: either 5-fluorouracil/leucovorin or > 5-fluorouracil/leucovorin plus oxaliplatin. The group receiving the > oxaliplatin combination had a 53% response rate, compared with only > 16% in the those who did not receive oxaliplatin > > Camptosar > http://www.pharmaciaoncology.com/products.asp?CType=3 & PType=2 > > 2 trials which were basis of Camptosar approval showed only 39% and > 35% response rates, respectively. > > ******************************************************************** > > So...I think Lin is really (at least in the back of his mind, if > not explicitly stated) thinking in terms of " restaging " for surgery > (and that's good, because it means he hasn't " given up " on Rick's > case). If he waits until the Camptosar stops working, then as you > know chances are very low that Oxaliplatin could shrink stuff further > (about 9%). > > If Rick switched to Oxal now and tumors grow rather than remain > stable (i.e. Oxal just " doesn't work " for him), then little is lost > as they would simply switch back to Camptosar on the next cycle. > Seems to me there isn't much downside to giving it a try. > > Best Wishes, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 In a message dated 6/20/03 5:59:18 PM Eastern Daylight Time, altman23@... writes: > Not having to look at, call, talk to, argue with, or beg a " medical > professional " for ANYTHING...for several whole months........PRICELESS!!! > > (ok, sorry, I must apologise for being a wise-ass!) > > ;o) > > Best Wishes, > > > > LOLOL, that's too funny, ! On the serious side though, if I'm not mistaken there's a program through Roche where they will pay for the Xeloda - I am going to be checking into it for when my Medicaid runs out in August. I started on Xeloda on Tuesday, 5 pills a day which I think is equivalent to 2500/day. The onc is going to monitor me through my CEA (which is a good marker for me) and then do scans in a few months. I'm doing 2 weeks on, 1 week off. So far, so good... Oh, and if you hear of any trials using Avastin let me know...the only ones I've found look like they are going to be for folks who've failed CPT-11 and Oxaliplatin, neither of which I've had (nor really want if I can avoid them). Terry in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 In a message dated 6/20/03 6:48:22 PM Eastern Daylight Time, erica259@... writes: > hi there, > I was just wondering if you would be so kind as to tell me how one can > qualify for medicaid. It may be something that will be necessary in the future.. > and it never hurts to be prepared for it. > Thanks > a I ended up qualifying for it when I applied for Social Security Disability....our income was so low that I first qualified for Supplemental Social Security Income and Medicaid automatically goes with that in the state I live in. Only trouble is that once I qualified for Social Security Disability (which is after I was considered disabled for 6 months) then I no longer meet the criteria for Supplemental Income and hence will lose the Medicaid. I can apply for it again once I lose it, but it will be under a different program (through DFACS), one that balances income against medical expenses and they look at income differently than Social Security does so I probably won't qualify. My husband is self-employed and so our net income is very low...our gross income OTOH is pretty high so that knocks us out of a lot of programs. And we had no insurance at the time I was diagnosed (I was self-employed too). This is probably way more info than you needed, LOL Sorry! Terry in GA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 Hi Donna, Not a lot new, just happy for each day I wake up still relatively functional! Was thinking they were going to come out w/ new NCI trial involving Avastin, but apparently not in the near future. Rumor was prior therapy would make you not eligible for the trial. Chances of Oxaliplatin/5-FU/Avastin " working " are probably much higher than Xeloda alone. Onc doesn't seem eager to start the Xeloda (probably thinks I can't afford it), I'm sure he would if I push enough, but I haven't done all the endless needling, calling, pushing and prodding which appears necessary to get anything done with all the doctors I deal with. Hmm, maybe next week... But really, the situation is kinda like: Oxaliplatin........$20,000/month Xeloda.............$2000/month Scans to see if it does anything.....$900/6 weeks Not having to look at, call, talk to, argue with, or beg a " medical professional " for ANYTHING...for several whole months........PRICELESS!!! (ok, sorry, I must apologise for being a wise-ass!) ;o) Best Wishes, PS Getting serious again, please tell Rick I hope the port surgery goes well. > Thanks .......... it makes sense to me. We will be sure to ask > about this at our next appointment (which is with a new Oncologist at > the facility where the Clinical Trials are being conducted) on June > 30th. We have an appointment with our local surgeon the same > day ....ready to get that port installed! :-) How do things stand > with you since your last report ..... any new news? Are you going to > start the Xeloda? > > Thanks, > Donna S. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2003 Report Share Posted June 20, 2003 altman23 said: <snip> > But really, the situation is kinda like: > > Oxaliplatin........$20,000/month > Xeloda.............$2000/month > Scans to see if it does anything.....$900/6 weeks Is Oxali really that expensive? I'm serious, I don't deal with the numbers, that's all done between my doctors and my HMO. If it is even close to that much, I am amazed that my HMO covered it without blinking. Gee whiz, I'm gonna be worth something after I get this stuff pumped into me for six months! I guess I can always say that I have $1000's of dollars of platinum floating around in my veins. --Chuck -- Chuck Tharp veloman@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2003 Report Share Posted June 21, 2003 > > Thanks .......... it makes sense to me. We will be sure to > ask > > about this at our next appointment (which is with a new Oncologist > at > > the facility where the Clinical Trials are being conducted) on June > > 30th. We have an appointment with our local surgeon the same > > day ....ready to get that port installed! :-) How do things stand > > with you since your last report ..... any new news? Are you going > to > > start the Xeloda? > > > > Thanks, > > Donna S. Quote Link to comment Share on other sites More sharing options...
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