Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Hi Celia, I'm glad you had a nice trip to Florida. It's not snowing here in Albuquerque but the weather sure turned cold with a raw wind so this has been a crazy spring here. You asked about Alpha Lipoic Acid. You do not get this by prescription. It is normally found in the drug or health food store. You can purchase it at http://www.puritanspride.com right now at a very good price. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Celia, Welcome back! I am glad you had a good trip to Florida. Smiles, a Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2003 Report Share Posted June 4, 2003 Celia Welcome home. I can't wait to hear about the trip. laurie > > Reply-To: > Date: Wed, 04 Jun 2003 20:38:59 -0000 > To: > Subject: I'm Back > > Hi Groupies, Just wanted to let you know I am back from my 3 week > sojourn in Yukon/Alaska. Had a great time but it's great to be home > now. I hope everyone is keeping (resonably ) well. I have so much to > catch up with now, house, mail, email etc. etc. but I hope to be back > posting soon. Celia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2003 Report Share Posted June 12, 2003 What can I say but Thank you, thank you, thank you to everyone who was so kind and responded to me with help,support and prayers. I'm not feeling well still, but much better than I was over the weekend. We finally spoke with a nurse at my immunologist office and they have changed my orders for next months IVIG. I will be premedicated with Solumedrol and Motrin. They have also slowed the rate so that I will receive it over 5-6 hours this next time instead of 3 1/2. The doc seems to think this will alleviate the aseptic meningitis I experienced afterwards. If I do get the headache again then my local doc is suppose to write a script for me to get Imitrex or Zomig (migraine meds) and a Medrol dose pack. I'm praying that I don't get it again. Also I think I forget to mention awhile back that Dr Cohen has ordered for me to have my carnitine plasma levels checked again on the 19th. I will have levels drawn on the 19th, then no Carnitor for 24 hrs and then again on the 20th. This will check to see if the Carnitine is getting into the mitochondria or not. Thank you once again. You have helped me more than you will ever know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Lynn: Why do you stay with that oncologist? Is it the area you are in?Insurance? Surely there is a major center near you or some cancer support group to help you both. Nick is on the xeloda,we are waiting until Monday for the latest results,today we started the third round of treatment. The sensation is neuropathy and a side effect,sometimes it comes long after the chemo is discontinued. I don't know where you live,but check into some kind of support group that could help you so all the burden is not on you and your family. Hugs and prayers Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Lynn: Why do you stay with that oncologist? Is it the area you are in?Insurance? Surely there is a major center near you or some cancer support group to help you both. Nick is on the xeloda,we are waiting until Monday for the latest results,today we started the third round of treatment. The sensation is neuropathy and a side effect,sometimes it comes long after the chemo is discontinued. I don't know where you live,but check into some kind of support group that could help you so all the burden is not on you and your family. Hugs and prayers Nick & Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Hi Lynn ............. sorry to hear your Dad is having these mixed results. You mentioned your Dad having trouble with his hand and leg on the right side and some memory/confusion problems. I would certainly ask the Doc about at least running a brain scan just to be on the safe side. If he did have a tumor in the brain, you'd find it on the opposite side of where he's having the numbness. Hopefully it's not a brain tumor ....... but if it were, you darned sure want to know that ASAP so you can get on it!! PLEASE let us know what you find out. Also, you asked the following question: " My limited understanding of this is.... Cancer cells are genetically unstable and very fast mutating..they are constantly changing and this is one of the things that makes them different from normal cells. It is also the primary mechanism by which the cells are eventually able to overcome the effects of chemotherapy, even when it initally seems to work well. Its that " Darwinian thing " going on, you know, survival of the fittest and such. Chemo kills off vast numbers of cancer cells, but there are always a small number which are not affected, and of course they are the ones left over after " most " cancer cells are killed. But that's all it takes - they split and make more " super resistant " cells, which split again and...you get the idea. So you end up with tumors composed entirely of " super cancer " which is completely immune to chemo. At this point the cancer is deemed " chemo-resistant " . Now its actually even stranger than that, because I have read that SOME chemoresistant patients, if they are off chemo for a bit and then start taking it later, will have the chemo START working again (!!!) And the reason is because during the time they were off therapy, their cancer continued to mutate and " forgot " to keep the property of " chemoresistance " needed for survival... Anyway, not only do different people have different " cancers " (e.g. some people can have metastatic disease with NORMAL CEA!!!), the cancer is not even the " same " from met to met! There are different " cell populations " from met to met...in a single person, some mets might produce CEA while others do not. Also, a patient could be on chemotherapy, the chemo shrinks SOME mets while others continue to grow.... You have to remember that chemo only shrinks mets in less than 50% of patients who have never been exposed to it before...there obviously must be many " versions of cancer " immune to chemo! Should it be surprising that the same person could have some mets immune to chemo and some mets which will be killed by chemo? There is NO RELATIONSHIP between CEA and tumor size. Some tumors could be composed of cells which are HIGH CEA producers, and a small tumor produces a HIGH CEA. Other tumors could be composed of cells which are LOW CEA producers, and the tumor could be huge before CEA rose significantly. Cancer may change as time goes on. At the time of my first liver resection, I had " CEA less than .5 " , but tumors visible on scan. At the time of my second liver resection, CEA was 30. Obviously, the FIRST liver mets were LOW CEA producers, and the second set were HIGH CEA producers. You gotta remember, with cancer ANYTHING can happen...no rules....no guidelines.... Isn't this a mess LOL! (Usual Disclaimer...I'm no doctor...the above was what oncologists have told me in lengthy conversations!) Best Wishes, " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Hi Lynn ............. sorry to hear your Dad is having these mixed results. You mentioned your Dad having trouble with his hand and leg on the right side and some memory/confusion problems. I would certainly ask the Doc about at least running a brain scan just to be on the safe side. If he did have a tumor in the brain, you'd find it on the opposite side of where he's having the numbness. Hopefully it's not a brain tumor ....... but if it were, you darned sure want to know that ASAP so you can get on it!! PLEASE let us know what you find out. Also, you asked the following question: " My limited understanding of this is.... Cancer cells are genetically unstable and very fast mutating..they are constantly changing and this is one of the things that makes them different from normal cells. It is also the primary mechanism by which the cells are eventually able to overcome the effects of chemotherapy, even when it initally seems to work well. Its that " Darwinian thing " going on, you know, survival of the fittest and such. Chemo kills off vast numbers of cancer cells, but there are always a small number which are not affected, and of course they are the ones left over after " most " cancer cells are killed. But that's all it takes - they split and make more " super resistant " cells, which split again and...you get the idea. So you end up with tumors composed entirely of " super cancer " which is completely immune to chemo. At this point the cancer is deemed " chemo-resistant " . Now its actually even stranger than that, because I have read that SOME chemoresistant patients, if they are off chemo for a bit and then start taking it later, will have the chemo START working again (!!!) And the reason is because during the time they were off therapy, their cancer continued to mutate and " forgot " to keep the property of " chemoresistance " needed for survival... Anyway, not only do different people have different " cancers " (e.g. some people can have metastatic disease with NORMAL CEA!!!), the cancer is not even the " same " from met to met! There are different " cell populations " from met to met...in a single person, some mets might produce CEA while others do not. Also, a patient could be on chemotherapy, the chemo shrinks SOME mets while others continue to grow.... You have to remember that chemo only shrinks mets in less than 50% of patients who have never been exposed to it before...there obviously must be many " versions of cancer " immune to chemo! Should it be surprising that the same person could have some mets immune to chemo and some mets which will be killed by chemo? There is NO RELATIONSHIP between CEA and tumor size. Some tumors could be composed of cells which are HIGH CEA producers, and a small tumor produces a HIGH CEA. Other tumors could be composed of cells which are LOW CEA producers, and the tumor could be huge before CEA rose significantly. Cancer may change as time goes on. At the time of my first liver resection, I had " CEA less than .5 " , but tumors visible on scan. At the time of my second liver resection, CEA was 30. Obviously, the FIRST liver mets were LOW CEA producers, and the second set were HIGH CEA producers. You gotta remember, with cancer ANYTHING can happen...no rules....no guidelines.... Isn't this a mess LOL! (Usual Disclaimer...I'm no doctor...the above was what oncologists have told me in lengthy conversations!) Best Wishes, " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Hi Lynn ............. sorry to hear your Dad is having these mixed results. You mentioned your Dad having trouble with his hand and leg on the right side and some memory/confusion problems. I would certainly ask the Doc about at least running a brain scan just to be on the safe side. If he did have a tumor in the brain, you'd find it on the opposite side of where he's having the numbness. Hopefully it's not a brain tumor ....... but if it were, you darned sure want to know that ASAP so you can get on it!! PLEASE let us know what you find out. Also, you asked the following question: " My limited understanding of this is.... Cancer cells are genetically unstable and very fast mutating..they are constantly changing and this is one of the things that makes them different from normal cells. It is also the primary mechanism by which the cells are eventually able to overcome the effects of chemotherapy, even when it initally seems to work well. Its that " Darwinian thing " going on, you know, survival of the fittest and such. Chemo kills off vast numbers of cancer cells, but there are always a small number which are not affected, and of course they are the ones left over after " most " cancer cells are killed. But that's all it takes - they split and make more " super resistant " cells, which split again and...you get the idea. So you end up with tumors composed entirely of " super cancer " which is completely immune to chemo. At this point the cancer is deemed " chemo-resistant " . Now its actually even stranger than that, because I have read that SOME chemoresistant patients, if they are off chemo for a bit and then start taking it later, will have the chemo START working again (!!!) And the reason is because during the time they were off therapy, their cancer continued to mutate and " forgot " to keep the property of " chemoresistance " needed for survival... Anyway, not only do different people have different " cancers " (e.g. some people can have metastatic disease with NORMAL CEA!!!), the cancer is not even the " same " from met to met! There are different " cell populations " from met to met...in a single person, some mets might produce CEA while others do not. Also, a patient could be on chemotherapy, the chemo shrinks SOME mets while others continue to grow.... You have to remember that chemo only shrinks mets in less than 50% of patients who have never been exposed to it before...there obviously must be many " versions of cancer " immune to chemo! Should it be surprising that the same person could have some mets immune to chemo and some mets which will be killed by chemo? There is NO RELATIONSHIP between CEA and tumor size. Some tumors could be composed of cells which are HIGH CEA producers, and a small tumor produces a HIGH CEA. Other tumors could be composed of cells which are LOW CEA producers, and the tumor could be huge before CEA rose significantly. Cancer may change as time goes on. At the time of my first liver resection, I had " CEA less than .5 " , but tumors visible on scan. At the time of my second liver resection, CEA was 30. Obviously, the FIRST liver mets were LOW CEA producers, and the second set were HIGH CEA producers. You gotta remember, with cancer ANYTHING can happen...no rules....no guidelines.... Isn't this a mess LOL! (Usual Disclaimer...I'm no doctor...the above was what oncologists have told me in lengthy conversations!) Best Wishes, " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Nick and Jane, My dad is a stubborn man. The local onc. is highly recommended in our town, so my dad doesn't see the need to travel. From what I have seen over the past six months, I have been unimpressed with the onc. He told me once not to ask him questions unless I knew what I was talking about, and that he would tell us what we need to know when we need to know it. My dad refuses to get a second opinion, and I have come to terms with that. I asked about local support groups, and he said if my dad wanted know about support groups he would ask himself. There are many other instances where this doctor shows no compassion. What I have heard is that if you follow what he tells you without questions, all is well. I could go on all day about my opinion of this man. I am lucky to have this sight to turn to for answers. Thanks to all of you. Lynn -- - In colon_cancer_support , Abuelopop@a... wrote: > Lynn: Why do you stay with that oncologist? Is it the area you are > in?Insurance? > Surely there is a major center near you or some cancer support group to help > you both. Nick is on the xeloda,we are waiting until Monday for the latest > results,today we started the third round of treatment. The sensation is > neuropathy and a side effect,sometimes it comes long after the chemo is discontinued. I > don't know where > you live,but check into some kind of support group that could help you so all > the > burden is not on you and your family. Hugs and prayers Nick & Jane > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Donna thanks for your reply. I have two young children at home so it is hard for me to find to time to search for answers in all the previous posts. I told my mom to mention memory problem to the onc. at the last visit, and she didn't. I think she is scared to think it might have spread further. He has an appt. in two weeks, she promised me she will say something then. What a great explanation from about the spread of cancer cells and CEA. My dad's CEA levels have been normal up until his last visit, the raise in CEA prompted a CT scan, which showed the spread to the lung. I will print this info off and share it with my parents as they are confused. I will be forever thankful to for all he has done for those on this board. He is greatly missed. Lynn --- In colon_cancer_support , " Donna Sisco " <cncrsps2002@y...> wrote: > Hi Lynn ............. sorry to hear your Dad is having these mixed > results. You mentioned your Dad having trouble with his hand and leg > on the right side and some memory/confusion problems. I would > certainly ask the Doc about at least running a brain scan just to be > on the safe side. If he did have a tumor in the brain, you'd find > it on the opposite side of where he's having the numbness. > Hopefully it's not a brain tumor ....... but if it were, you darned > sure want to know that ASAP so you can get on it!! PLEASE let us > know what you find out. Also, you asked the following question: > > > > " My limited understanding of this is.... > > Cancer cells are genetically unstable and very fast mutating..they > are constantly changing and this is one of the things that makes them > different from normal cells. It is also the primary mechanism by > which the cells are eventually able to overcome the effects of > chemotherapy, even when it initally seems to work well. Its > that " Darwinian thing " going on, you know, survival of the fittest > and such. Chemo kills off vast numbers of cancer cells, but there > are always a small number which are not affected, and of course they > are the ones left over after " most " cancer cells are killed. But > that's all it takes - they split and make more " super resistant " > cells, which split again and...you get the idea. So you end up with > tumors composed entirely of " super cancer " which is completely immune > to chemo. At this point the cancer is deemed " chemo-resistant " . > > Now its actually even stranger than that, because I have read that > SOME chemoresistant patients, if they are off chemo for a bit and > then start taking it later, will have the chemo START working again > (!!!) And the reason is because during the time they were off > therapy, their cancer continued to mutate and " forgot " to keep the > property of " chemoresistance " needed for survival... > > Anyway, not only do different people have different " cancers " (e.g. > some people can have metastatic disease with NORMAL CEA!!!), the > cancer is not even the " same " from met to met! There are > different " cell populations " from met to met...in a single person, > some mets might produce CEA while others do not. Also, a patient > could be on chemotherapy, the chemo shrinks SOME mets while others > continue to grow.... > > You have to remember that chemo only shrinks mets in less than 50% of > patients who have never been exposed to it before...there obviously > must be many " versions of cancer " immune to chemo! Should it be > surprising that the same person could have some mets immune to chemo > and some mets which will be killed by chemo? > > There is NO RELATIONSHIP between CEA and tumor size. Some tumors > could be composed of cells which are HIGH CEA producers, and a small > tumor produces a HIGH CEA. Other tumors could be composed of cells > which are LOW CEA producers, and the tumor could be huge before CEA > rose significantly. > > Cancer may change as time goes on. At the time of my first liver > resection, I had " CEA less than .5 " , but tumors visible on scan. At > the time of my second liver resection, CEA was 30. Obviously, the > FIRST liver mets were LOW CEA producers, and the second set were HIGH > CEA producers. > > You gotta remember, with cancer ANYTHING can happen...no rules....no > guidelines.... > > Isn't this a mess LOL! > > (Usual Disclaimer...I'm no doctor...the above was what oncologists > have told me in lengthy conversations!) > > Best Wishes, > > " Quote Link to comment Share on other sites More sharing options...
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