Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Holly, Thought I was reading my own story when I read yours.......yes this is the protocol......I went to Mayo and met with Dr. Lindor and he told me TRISOMY 7 does NOT mean cancer...........that is what my cytology was......Drs. at Madison do 6 weeks of chemo and radiation and Dr. Lindor mentioned that Mayo would do 3 weeks of chemo and radiation.......I picked up on this but at the time I did not ask why the difference but will ask him if this ever gets to that point again.......I wrote you a message on your private email about my story.......I'm anxious to here if yours is Trisomy 7 too...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2008 Report Share Posted November 26, 2008 Holly, Thought I was reading my own story when I read yours.......yes this is the protocol......I went to Mayo and met with Dr. Lindor and he told me TRISOMY 7 does NOT mean cancer...........that is what my cytology was......Drs. at Madison do 6 weeks of chemo and radiation and Dr. Lindor mentioned that Mayo would do 3 weeks of chemo and radiation.......I picked up on this but at the time I did not ask why the difference but will ask him if this ever gets to that point again.......I wrote you a message on your private email about my story.......I'm anxious to here if yours is Trisomy 7 too...... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 27, 2008 Report Share Posted November 27, 2008 I didn't get your email. I'm not sure why but could you be so kind as to send it again? Try hmgertz@... thank you! Happy Thanksgiving! > > Holly, > > Thought I was reading my own story when I read yours.......yes this is the protocol......I went to Mayo and met with Dr. Lindor and he told me TRISOMY 7 does NOT mean cancer...........that is what my cytology was......Drs. at Madison do 6 weeks of chemo and radiation and Dr. Lindor mentioned that Mayo would do 3 weeks of chemo and radiation.......I picked up on this but at the time I did not ask why the difference but will ask him if this ever gets to that point again.......I wrote you a message on your private email about my story.......I'm anxious to here if yours is Trisomy 7 too...... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 > > Holly: I had been seeing Dr. Mussat at UW - Madison and I was told the same thing you were........my tests all came back neg. but my cytology showed Trisomy 7 and they wanted to do Chemo and Radiation on me also.......I was dumbfounded the day they said this to me.....well, I went to Madison in Sept. all set to start and went to the Radiologist first and he said " I can't do radiation on you as you don't have cancer " then I went to Dr. Schelmann (oncologist at UW-Madison) and he said " I can't give you chemo as you do not have cancer " I was so happy I could not believe how lucky I was.....on to the transplant center and Dr. Mussat saw me and stuck his head in to say Hi and I told home what was going on and he said he did not want to play with this type of cancer as he has seen it in many different forms and it is not something to play with he was going to talk to those two Dr. and they would get back to me.....then in came the surgeon and he went along with Dr. Mussat.....so I came home and my tx coordinator called a few days later and said they were all on the same page now and wanted to get going on this.....well, my primary Dr. had heard this and he was calling me here in our home town and he said you have to go to Mayo before you do this.....I called Madison on a Tue. and they got me in with Dr. Lindor at Mayo for the following Monday.....I went to Mayo and Dr. Lindor told me that Trisomy 7 does not mean cancer.....they have just realized this and it is so new that they have not even written an article on this yet....Dr. Lindor told me to go home relax and come back in 3 months for another ERCP and brushing......and in 6 weeks he wanted liver enzymes run.....I had them run last week and they came back all high....so now I have to go in again on Friday or next week and have blood drawn again to see if there is a change....he said if they come down that would be good but if they don't come down I have to get back to Mayo for another ERCP.....I am a nervous wreck since all this started.....Don't know who to believe or what to think.....I really like Dr. Mussat and I like Dr. Lindor allot too and I know Mayo sets the protocol on Liver transplants so guess I will listen to Dr. Lindor but wonder all the time what is going on.....This is really scary right......please let me know what Dr. you are seeing and if yours was the cytology was trisomy 7...... Good Luck CJ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Dear CJ, I'm so glad that you posted, I've been wondering about you since your visit to Mayo, but didn't want to bother you if you weren't up for discussing it. Granted, I'm not on the site often so I may have just missed you. Either way, I'm sorry that you are going through all of this, but I'm so glad to hear there is hope of non existent cancer. Hang in there and know that there are many cheering you on and praying for great things to come! (MO) Re:Possible carcinoma and transplant? > > Holly: I had been seeing Dr. Mussat at UW - Madison and I was told the same thing you were........my tests all came back neg. but my cytology showed Trisomy 7 and they wanted to do Chemo and Radiation on me also.......I was dumbfounded the day they said this to me.....well, I went to Madison in Sept. all set to start and went to the Radiologist first and he said "I can't do radiation on you as you don't have cancer" then I went to Dr. Schelmann (oncologist at UW-Madison) and he said "I can't give you chemo as you do not have cancer" I was so happy I could not believe how lucky I was.....on to the transplant center and Dr. Mussat saw me and stuck his head in to say Hi and I told home what was going on and he said he did not want to play with this type of cancer as he has seen it in many different forms and it is not something to play with he was going to talk to those two Dr. and they would get back to me.....then in came the surgeon and he went along with Dr. Mussat.....so I came home and my tx coordinator called a few days later and said they were all on the same page now and wanted to get going on this.....well, my primary Dr. had heard this and he was calling me here in our home town and he said you have to go to Mayo before you do this.....I called Madison on a Tue. and they got me in with Dr. Lindor at Mayo for the following Monday.....I went to Mayo and Dr. Lindor told me that Trisomy 7 does not mean cancer.....they have just realized this and it is so new that they have not even written an article on this yet....Dr. Lindor told me to go home relax and come back in 3 months for another ERCP and brushing......and in 6 weeks he wanted liver enzymes run.....I had them run last week and they came back all high....so now I have to go in again on Friday or next week and have blood drawn again to see if there is a change....he said if they come down that would be good but if they don't come down I have to get back to Mayo for another ERCP.....I am a nervous wreck since all this started.....Don't know who to believe or what to think.....I really like Dr. Mussat and I like Dr. Lindor allot too and I know Mayo sets the protocol on Liver transplants so guess I will listen to Dr. Lindor but wonder all the time what is going on.....This is really scary right......please let me know what Dr. you are seeing and if yours was the cytology was trisomy 7...... Good Luck CJ > Tis the season to save your money! Get the new AOL Holiday Toolbar for money saving offers and gift ideas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Dear CJ, I'm so glad that you posted, I've been wondering about you since your visit to Mayo, but didn't want to bother you if you weren't up for discussing it. Granted, I'm not on the site often so I may have just missed you. Either way, I'm sorry that you are going through all of this, but I'm so glad to hear there is hope of non existent cancer. Hang in there and know that there are many cheering you on and praying for great things to come! (MO) Re:Possible carcinoma and transplant? > > Holly: I had been seeing Dr. Mussat at UW - Madison and I was told the same thing you were........my tests all came back neg. but my cytology showed Trisomy 7 and they wanted to do Chemo and Radiation on me also.......I was dumbfounded the day they said this to me.....well, I went to Madison in Sept. all set to start and went to the Radiologist first and he said "I can't do radiation on you as you don't have cancer" then I went to Dr. Schelmann (oncologist at UW-Madison) and he said "I can't give you chemo as you do not have cancer" I was so happy I could not believe how lucky I was.....on to the transplant center and Dr. Mussat saw me and stuck his head in to say Hi and I told home what was going on and he said he did not want to play with this type of cancer as he has seen it in many different forms and it is not something to play with he was going to talk to those two Dr. and they would get back to me.....then in came the surgeon and he went along with Dr. Mussat.....so I came home and my tx coordinator called a few days later and said they were all on the same page now and wanted to get going on this.....well, my primary Dr. had heard this and he was calling me here in our home town and he said you have to go to Mayo before you do this.....I called Madison on a Tue. and they got me in with Dr. Lindor at Mayo for the following Monday.....I went to Mayo and Dr. Lindor told me that Trisomy 7 does not mean cancer.....they have just realized this and it is so new that they have not even written an article on this yet....Dr. Lindor told me to go home relax and come back in 3 months for another ERCP and brushing......and in 6 weeks he wanted liver enzymes run.....I had them run last week and they came back all high....so now I have to go in again on Friday or next week and have blood drawn again to see if there is a change....he said if they come down that would be good but if they don't come down I have to get back to Mayo for another ERCP.....I am a nervous wreck since all this started.....Don't know who to believe or what to think.....I really like Dr. Mussat and I like Dr. Lindor allot too and I know Mayo sets the protocol on Liver transplants so guess I will listen to Dr. Lindor but wonder all the time what is going on.....This is really scary right......please let me know what Dr. you are seeing and if yours was the cytology was trisomy 7...... Good Luck CJ > Tis the season to save your money! Get the new AOL Holiday Toolbar for money saving offers and gift ideas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2008 Report Share Posted December 1, 2008 Dear CJ, I'm so glad that you posted, I've been wondering about you since your visit to Mayo, but didn't want to bother you if you weren't up for discussing it. Granted, I'm not on the site often so I may have just missed you. Either way, I'm sorry that you are going through all of this, but I'm so glad to hear there is hope of non existent cancer. Hang in there and know that there are many cheering you on and praying for great things to come! (MO) Re:Possible carcinoma and transplant? > > Holly: I had been seeing Dr. Mussat at UW - Madison and I was told the same thing you were........my tests all came back neg. but my cytology showed Trisomy 7 and they wanted to do Chemo and Radiation on me also.......I was dumbfounded the day they said this to me.....well, I went to Madison in Sept. all set to start and went to the Radiologist first and he said "I can't do radiation on you as you don't have cancer" then I went to Dr. Schelmann (oncologist at UW-Madison) and he said "I can't give you chemo as you do not have cancer" I was so happy I could not believe how lucky I was.....on to the transplant center and Dr. Mussat saw me and stuck his head in to say Hi and I told home what was going on and he said he did not want to play with this type of cancer as he has seen it in many different forms and it is not something to play with he was going to talk to those two Dr. and they would get back to me.....then in came the surgeon and he went along with Dr. Mussat.....so I came home and my tx coordinator called a few days later and said they were all on the same page now and wanted to get going on this.....well, my primary Dr. had heard this and he was calling me here in our home town and he said you have to go to Mayo before you do this.....I called Madison on a Tue. and they got me in with Dr. Lindor at Mayo for the following Monday.....I went to Mayo and Dr. Lindor told me that Trisomy 7 does not mean cancer.....they have just realized this and it is so new that they have not even written an article on this yet....Dr. Lindor told me to go home relax and come back in 3 months for another ERCP and brushing......and in 6 weeks he wanted liver enzymes run.....I had them run last week and they came back all high....so now I have to go in again on Friday or next week and have blood drawn again to see if there is a change....he said if they come down that would be good but if they don't come down I have to get back to Mayo for another ERCP.....I am a nervous wreck since all this started.....Don't know who to believe or what to think.....I really like Dr. Mussat and I like Dr. Lindor allot too and I know Mayo sets the protocol on Liver transplants so guess I will listen to Dr. Lindor but wonder all the time what is going on.....This is really scary right......please let me know what Dr. you are seeing and if yours was the cytology was trisomy 7...... Good Luck CJ > Tis the season to save your money! Get the new AOL Holiday Toolbar for money saving offers and gift ideas. Quote Link to comment Share on other sites More sharing options...
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