Guest guest Posted April 18, 2004 Report Share Posted April 18, 2004 Hi all, It has been a very confusing and frustrating two weeks for me. I went to the NCI in Bethesda MD and they gave me a second opinion. The doctors feel that surgery right now would be difficult on me but they are not ruling it out. I came home and had my 4th FOLFOX treatment and I have been on the PTK787. My CEA when all of this started was 44 after two treatments it was 21 at the NCI it was 5 and last week it was 3.9. The MRI I had last week says 2 of the 3 mets in my liver have shrunk but one remains the same. They are now saying the adrenal is an adenoma or cyst but can't rule out metastatic disease. The paraaortic lymph node has shrunk in half. I go tomorrow for re-evaluation and my 5th treatment. I am not sure where or when things will happen but my guess is they will say do one more round of FOLFOX +/- the PTK787 or Avastin. I am not sure what to do other than have the treatment. I sent the NCI my latest films and they say stay with my oncologist's reccommendation for now and they will re-read the films and give me their decision. They have also said they may want me to come back for a CT/PET combo to see where the uptake really is. The NCI says I have such little disease yet surgery is risky? What do you guys think? Thanks Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Jennie, Tough decision - know where you are coming from. I think most, if not all of us with this type of disease are prone to want to get into surgery, because it represents a way to tangibly get the stuff out. I'm on FOLFOX too, going for my third treatment day after tomorrow. Like you, I want surgery too (I have 5 or 6 tumors in the liver), but the doctors I talked to said to give chemo six months (12 treatments) to work first. The smaller everything in the liver is, the better the surgery will go, according to them; also, six months gives the chemo long enough to have a potent effect on the rest of the system - it doesn't make too much sense to take tumors out of the liver when cells are still floating around in other places. Hence, based on what you have said, I would do some more treatment before surgery, but remember, too, that I am not a medical doctor (although I am almost a doctor of philosophy), just a patient. Today will be bad day for both of us - a treatment is coming up, and if you're anything like me, the last five or so days of the treatment cycle go really well, and you don't want feel bad, like you know you're going to feel for the next 7-8 days. Hang in there. Joe > Hi all, > It has been a very confusing and frustrating two weeks for me. I > went to the NCI in Bethesda MD and they gave me a second opinion. > The doctors feel that surgery right now would be difficult on me but > they are not ruling it out. I came home and had my 4th FOLFOX > treatment and I have been on the PTK787. My CEA when all of this > started was 44 after two treatments it was 21 at the NCI it was 5 > and last week it was 3.9. The MRI I had last week says 2 of the 3 > mets in my liver have shrunk but one remains the same. They are now > saying the adrenal is an adenoma or cyst but can't rule out > metastatic disease. The paraaortic lymph node has shrunk in half. I > go tomorrow for re-evaluation and my 5th treatment. I am not sure > where or when things will happen but my guess is they will say do > one more round of FOLFOX +/- the PTK787 or Avastin. I am not sure > what to do other than have the treatment. I sent the NCI my latest > films and they say stay with my oncologist's reccommendation for now > and they will re-read the films and give me their decision. They > have also said they may want me to come back for a CT/PET combo to > see where the uptake really is. The NCI says I have such little > disease yet surgery is risky? What do you guys think? > > Thanks > > Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Jennie, Tough decision - know where you are coming from. I think most, if not all of us with this type of disease are prone to want to get into surgery, because it represents a way to tangibly get the stuff out. I'm on FOLFOX too, going for my third treatment day after tomorrow. Like you, I want surgery too (I have 5 or 6 tumors in the liver), but the doctors I talked to said to give chemo six months (12 treatments) to work first. The smaller everything in the liver is, the better the surgery will go, according to them; also, six months gives the chemo long enough to have a potent effect on the rest of the system - it doesn't make too much sense to take tumors out of the liver when cells are still floating around in other places. Hence, based on what you have said, I would do some more treatment before surgery, but remember, too, that I am not a medical doctor (although I am almost a doctor of philosophy), just a patient. Today will be bad day for both of us - a treatment is coming up, and if you're anything like me, the last five or so days of the treatment cycle go really well, and you don't want feel bad, like you know you're going to feel for the next 7-8 days. Hang in there. Joe > Hi all, > It has been a very confusing and frustrating two weeks for me. I > went to the NCI in Bethesda MD and they gave me a second opinion. > The doctors feel that surgery right now would be difficult on me but > they are not ruling it out. I came home and had my 4th FOLFOX > treatment and I have been on the PTK787. My CEA when all of this > started was 44 after two treatments it was 21 at the NCI it was 5 > and last week it was 3.9. The MRI I had last week says 2 of the 3 > mets in my liver have shrunk but one remains the same. They are now > saying the adrenal is an adenoma or cyst but can't rule out > metastatic disease. The paraaortic lymph node has shrunk in half. I > go tomorrow for re-evaluation and my 5th treatment. I am not sure > where or when things will happen but my guess is they will say do > one more round of FOLFOX +/- the PTK787 or Avastin. I am not sure > what to do other than have the treatment. I sent the NCI my latest > films and they say stay with my oncologist's reccommendation for now > and they will re-read the films and give me their decision. They > have also said they may want me to come back for a CT/PET combo to > see where the uptake really is. The NCI says I have such little > disease yet surgery is risky? What do you guys think? > > Thanks > > Jennie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2004 Report Share Posted April 19, 2004 Jennie, Tough decision - know where you are coming from. I think most, if not all of us with this type of disease are prone to want to get into surgery, because it represents a way to tangibly get the stuff out. I'm on FOLFOX too, going for my third treatment day after tomorrow. Like you, I want surgery too (I have 5 or 6 tumors in the liver), but the doctors I talked to said to give chemo six months (12 treatments) to work first. The smaller everything in the liver is, the better the surgery will go, according to them; also, six months gives the chemo long enough to have a potent effect on the rest of the system - it doesn't make too much sense to take tumors out of the liver when cells are still floating around in other places. Hence, based on what you have said, I would do some more treatment before surgery, but remember, too, that I am not a medical doctor (although I am almost a doctor of philosophy), just a patient. Today will be bad day for both of us - a treatment is coming up, and if you're anything like me, the last five or so days of the treatment cycle go really well, and you don't want feel bad, like you know you're going to feel for the next 7-8 days. Hang in there. Joe > Hi all, > It has been a very confusing and frustrating two weeks for me. I > went to the NCI in Bethesda MD and they gave me a second opinion. > The doctors feel that surgery right now would be difficult on me but > they are not ruling it out. I came home and had my 4th FOLFOX > treatment and I have been on the PTK787. My CEA when all of this > started was 44 after two treatments it was 21 at the NCI it was 5 > and last week it was 3.9. The MRI I had last week says 2 of the 3 > mets in my liver have shrunk but one remains the same. They are now > saying the adrenal is an adenoma or cyst but can't rule out > metastatic disease. The paraaortic lymph node has shrunk in half. I > go tomorrow for re-evaluation and my 5th treatment. I am not sure > where or when things will happen but my guess is they will say do > one more round of FOLFOX +/- the PTK787 or Avastin. I am not sure > what to do other than have the treatment. I sent the NCI my latest > films and they say stay with my oncologist's reccommendation for now > and they will re-read the films and give me their decision. They > have also said they may want me to come back for a CT/PET combo to > see where the uptake really is. The NCI says I have such little > disease yet surgery is risky? What do you guys think? > > Thanks > > Jennie Quote Link to comment Share on other sites More sharing options...
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