Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 In a message dated 9/5/2005 3:31:06 PM Eastern Standard Time, suebutler45@... writes: Hello, Iam new here, Last April I went to emergency room, only to find out that I had Colon Cancer in the 3rd stage, they removed 3 masses, and 12 lympnodes, had a resection, took 5 chemo sessions, and could not handle it. Was told my enzemes were to low to tolerate it, but was offered nothing else. Have not been back to onocoligist. Went to hospital last month for colonostomy, and had to have more polups removed from rectum. Don't know what to expect from this point on, hoping to get some help here, with people who have been thru this, Thank- you Hi Sue!!! Welcome to our little family...but sorry that you needed to find us. Think if I was you, I would seek a 2nd opinion... were any lymphnodes cancerous?? A little summary of Glenn's " journey " ...it's not complete or up to date, but gives you an idea. Feel free to ask questions, vent, scream, cry...or even tease, laugh and joke when the mood strikes. We are here for you....and praying for you!! Lots of hugs and prayers, Donelle Caregiver to Glenn Colon resection 6/03 removing 9 in. of colon including cancerous tumore and 3 of 22 removed lymph nodes were also cancerous. Infection set in at surgical site...Open wound for 2 months, chemo for 8 months Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein Chemo infiltration to chest 8/04 with severe side effects including severe pain and muscle damage (permanent??) 10/04 Severe lower ab pain unable to eat, colon shut down, hospitalization w/morphine 8 days. Sent home with basically no diagnosis. Possibly the cancer causing the pain. Ascites (Fluid build-up) and Paracentesis (draining) on a regular weekly basis 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions Mid Dec. 04 - CT. Scan shows largest tumor on liver has reduced 1/3, remaining 11 tumors stable; no growth. Chemo is working...Yippee!! 02/05 Continued bi-wkly Ascites and Paracentesis may mean chemo no longer working. Emergency CT. Scan performed. Tumors are reducing in size, some as much as half!!! Chemo is working!!! Found a blot clot in the vein going in to the liver!!! Waiting for MRI so GI Dr. can decide to treat with meds or surgery. Onc. now believes the blood clot is reason for the continuing Ascites. March 04...Lovamax shots nightly to dissolve the clot and open the portal vein going in to the liver, hoping the liver will function more normally. Still not sure if blood clot or tumor. Why? No answers. ICU hospitalization twice..total of 9 days out of 14 for varices bleeding in the esophogus. No chemo now for 6 wks. Drs., Liver specialists, and GI specialists working on a plan. Ascites is doing more damage than chemo to Glenn's body. Have to " take a chance " (Drs. words) and do the shunt surgery and very SOON!! " Chemo Vacation " to build up Glenn's body for whatever!!! Liver Spec. does not agree with GI Dr. re: shunt surgery...now what?? TRYING TO KICK BUTT with this darn disease!!! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 In a message dated 9/5/2005 3:52:20 PM Eastern Standard Time, suebutler45@... writes: Thank you so much, You have really been thru a lot with this, Bless you, they were not sure if lympnodes were canerous, said they took them in case they were, trying to get into another doctor, but on disabilty now, and medicaid, and it takes forever, hope I live long enough to get one.Told me I only have 1-2 years without chemo, and will be 2 years in April/ No scans or bloodwork or testing of any kind in the last 6 months??? No attempt at another chemo that wouldn't be so strong for you?? I'm not understanding this. Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 I too would seek a 2nd opinion. There has to be something that can be done for you. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 I too would seek a 2nd opinion. There has to be something that can be done for you. Narice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 This is the old Medicaid game. Call your case worker the doctors and/or Medicaid should not be giving you the run around. You might also want to contact Patient Advocate Foundation at _http://www.patientadvocate.org/_ (http://www.patientadvocate.org/) . They can help you get care. Don't wait Take Care Narice In a message dated 9/5/2005 3:56:58 PM Eastern Standard Time, Grandmommyandme@... writes: In a message dated 9/5/2005 3:52:20 PM Eastern Standard Time, suebutler45@... writes: Thank you so much, You have really been thru a lot with this, Bless you, they were not sure if lympnodes were canerous, said they took them in case they were, trying to get into another doctor, but on disabilty now, and medicaid, and it takes forever, hope I live long enough to get one.Told me I only have 1-2 years without chemo, and will be 2 years in April/ No scans or bloodwork or testing of any kind in the last 6 months??? No attempt at another chemo that wouldn't be so strong for you?? I'm not understanding this. Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 This is the old Medicaid game. Call your case worker the doctors and/or Medicaid should not be giving you the run around. You might also want to contact Patient Advocate Foundation at _http://www.patientadvocate.org/_ (http://www.patientadvocate.org/) . They can help you get care. Don't wait Take Care Narice In a message dated 9/5/2005 3:56:58 PM Eastern Standard Time, Grandmommyandme@... writes: In a message dated 9/5/2005 3:52:20 PM Eastern Standard Time, suebutler45@... writes: Thank you so much, You have really been thru a lot with this, Bless you, they were not sure if lympnodes were canerous, said they took them in case they were, trying to get into another doctor, but on disabilty now, and medicaid, and it takes forever, hope I live long enough to get one.Told me I only have 1-2 years without chemo, and will be 2 years in April/ No scans or bloodwork or testing of any kind in the last 6 months??? No attempt at another chemo that wouldn't be so strong for you?? I'm not understanding this. Lots of hugs and prayers, Donelle Caregiver to Glenn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Thank you so much, You have really been thru a lot with this, Bless you, they were not sure if lympnodes were canerous, said they took them in case they were, trying to get into another doctor, but on disabilty now, and medicaid, and it takes forever, hope I live long enough to get one.Told me I only have 1-2 years without chemo, and will be 2 years in April/ > > > > > Hi Sue!!! > > Welcome to our little family...but sorry that you needed to find us. Think > if I was you, I would seek a 2nd opinion... were any lymphnodes cancerous?? > A little summary of Glenn's " journey " ...it's not complete or up to date, but > gives you an idea. > > Feel free to ask questions, vent, scream, cry...or even tease, laugh and > joke when the mood strikes. We are here for you....and praying for you!! > > > Lots of hugs and prayers, Donelle > Caregiver to Glenn > > > Colon resection 6/03 removing 9 in. of colon including cancerous tumore and > 3 of 22 removed lymph nodes were also cancerous. > Infection set in at surgical site...Open wound for 2 months, chemo for 8 > months > Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein > Chemo infiltration to chest 8/04 with severe side effects including severe > pain and muscle damage (permanent??) > 10/04 Severe lower ab pain unable to eat, colon shut down, hospitalization > w/morphine 8 days. Sent home with basically no diagnosis. Possibly the cancer > causing the pain. > Ascites (Fluid build-up) and Paracentesis (draining) on a regular weekly > basis > 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions > Mid Dec. 04 - CT. Scan shows largest tumor on liver has reduced 1/3, > remaining 11 tumors stable; no growth. Chemo is working...Yippee!! > 02/05 Continued bi-wkly Ascites and Paracentesis may mean chemo no longer > working. > Emergency CT. Scan performed. Tumors are reducing in size, some as much as > half!!! Chemo is working!!! > Found a blot clot in the vein going in to the liver!!! Waiting for MRI so > GI Dr. can decide to treat with meds or surgery. Onc. now believes the blood > clot is reason for the continuing Ascites. > March 04...Lovamax shots nightly to dissolve the clot and open the portal > vein going in to the liver, hoping the liver will function more normally. > Still not sure if blood clot or tumor. Why? No answers. > > ICU hospitalization twice..total of 9 days out of 14 for varices bleeding in > the esophogus. No chemo now for 6 wks. Drs., Liver specialists, and GI > specialists working on a plan. Ascites is doing more damage than chemo to Glenn's > body. Have to " take a chance " (Drs. words) and do the shunt surgery and > very SOON!! > > " Chemo Vacation " to build up Glenn's body for whatever!!! > > Liver Spec. does not agree with GI Dr. re: shunt surgery...now what?? > > TRYING TO KICK BUTT with this darn disease!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 What part of the country are you in? I also have medicaid. While it was a fight to get it started, I really have had no problem with my oncologist accepting it and treating me. I know in other areas it is hard to find a dr. to take it. Maybe try a university medical center? Jane Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 > I too would seek a 2nd opinion. There has to be something that can be done > for you. > Narice > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 > I too would seek a 2nd opinion. There has to be something that can be done > for you. > Narice > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 > > > This is the old Medicaid game. Call your case worker the doctors and/or > Medicaid should not be giving you the run around. You might also want to contact > Patient Advocate Foundation > at _http://www.patientadvocate.org/_ (http://www.patientadvocate.org/) . > They can help you get care. > > Don't wait > Take Care > Narice > > > In a message dated 9/5/2005 3:56:58 PM Eastern Standard Time, > Grandmommyandme@a... writes: > > In a message dated 9/5/2005 3:52:20 PM Eastern Standard Time, > suebutler45@y... writes: > > Thank you so much, You have really been thru a lot with this, Bless > you, they were not sure if lympnodes were canerous, said they took > them in case they were, trying to get into another doctor, but on > disabilty now, and medicaid, and it takes forever, hope I live long > enough to get one.Told me I only have 1-2 years without chemo, and > will be 2 years in April/ > > > > No scans or bloodwork or testing of any kind in the last 6 months??? No > attempt at another chemo that wouldn't be so strong for you?? I'm not > understanding this. > > Lots of hugs and prayers, Donelle > Caregiver to Glenn > > Thank-you so much for info > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 > > > This is the old Medicaid game. Call your case worker the doctors and/or > Medicaid should not be giving you the run around. You might also want to contact > Patient Advocate Foundation > at _http://www.patientadvocate.org/_ (http://www.patientadvocate.org/) . > They can help you get care. > > Don't wait > Take Care > Narice > > > In a message dated 9/5/2005 3:56:58 PM Eastern Standard Time, > Grandmommyandme@a... writes: > > In a message dated 9/5/2005 3:52:20 PM Eastern Standard Time, > suebutler45@y... writes: > > Thank you so much, You have really been thru a lot with this, Bless > you, they were not sure if lympnodes were canerous, said they took > them in case they were, trying to get into another doctor, but on > disabilty now, and medicaid, and it takes forever, hope I live long > enough to get one.Told me I only have 1-2 years without chemo, and > will be 2 years in April/ > > > > No scans or bloodwork or testing of any kind in the last 6 months??? No > attempt at another chemo that wouldn't be so strong for you?? I'm not > understanding this. > > Lots of hugs and prayers, Donelle > Caregiver to Glenn > > Thank-you so much for info > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Welcome to the group. These are great, supportive, caring people here. I was told two years ago I'd only live two years with chemo. Proved them wrong. My cancer's back in the abdomen wall so I'm starting chemo again, but don't listen to statistics. They can be just way off. Keep trying to find out more and get another opinion. suebutler45 suebutler45@...> wrote: Thank you so much, You have really been thru a lot with this, Bless you, they were not sure if lympnodes were canerous, said they took them in case they were, trying to get into another doctor, but on disabilty now, and medicaid, and it takes forever, hope I live long enough to get one.Told me I only have 1-2 years without chemo, and will be 2 years in April/ > > > > > Hi Sue!!! > > Welcome to our little family...but sorry that you needed to find us. Think > if I was you, I would seek a 2nd opinion... were any lymphnodes cancerous?? > A little summary of Glenn's " journey " ...it's not complete or up to date, but > gives you an idea. > > Feel free to ask questions, vent, scream, cry...or even tease, laugh and > joke when the mood strikes. We are here for you....and praying for you!! > > > Lots of hugs and prayers, Donelle > Caregiver to Glenn > > > Colon resection 6/03 removing 9 in. of colon including cancerous tumore and > 3 of 22 removed lymph nodes were also cancerous. > Infection set in at surgical site...Open wound for 2 months, chemo for 8 > months > Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein > Chemo infiltration to chest 8/04 with severe side effects including severe > pain and muscle damage (permanent??) > 10/04 Severe lower ab pain unable to eat, colon shut down, hospitalization > w/morphine 8 days. Sent home with basically no diagnosis. Possibly the cancer > causing the pain. > Ascites (Fluid build-up) and Paracentesis (draining) on a regular weekly > basis > 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions > Mid Dec. 04 - CT. Scan shows largest tumor on liver has reduced 1/3, > remaining 11 tumors stable; no growth. Chemo is working...Yippee!! > 02/05 Continued bi-wkly Ascites and Paracentesis may mean chemo no longer > working. > Emergency CT. Scan performed. Tumors are reducing in size, some as much as > half!!! Chemo is working!!! > Found a blot clot in the vein going in to the liver!!! Waiting for MRI so > GI Dr. can decide to treat with meds or surgery. Onc. now believes the blood > clot is reason for the continuing Ascites. > March 04...Lovamax shots nightly to dissolve the clot and open the portal > vein going in to the liver, hoping the liver will function more normally. > Still not sure if blood clot or tumor. Why? No answers. > > ICU hospitalization twice..total of 9 days out of 14 for varices bleeding in > the esophogus. No chemo now for 6 wks. Drs., Liver specialists, and GI > specialists working on a plan. Ascites is doing more damage than chemo to Glenn's > body. Have to " take a chance " (Drs. words) and do the shunt surgery and > very SOON!! > > " Chemo Vacation " to build up Glenn's body for whatever!!! > > Liver Spec. does not agree with GI Dr. re: shunt surgery...now what?? > > TRYING TO KICK BUTT with this darn disease!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2005 Report Share Posted September 5, 2005 Welcome to the group. These are great, supportive, caring people here. I was told two years ago I'd only live two years with chemo. Proved them wrong. My cancer's back in the abdomen wall so I'm starting chemo again, but don't listen to statistics. They can be just way off. Keep trying to find out more and get another opinion. suebutler45 suebutler45@...> wrote: Thank you so much, You have really been thru a lot with this, Bless you, they were not sure if lympnodes were canerous, said they took them in case they were, trying to get into another doctor, but on disabilty now, and medicaid, and it takes forever, hope I live long enough to get one.Told me I only have 1-2 years without chemo, and will be 2 years in April/ > > > > > Hi Sue!!! > > Welcome to our little family...but sorry that you needed to find us. Think > if I was you, I would seek a 2nd opinion... were any lymphnodes cancerous?? > A little summary of Glenn's " journey " ...it's not complete or up to date, but > gives you an idea. > > Feel free to ask questions, vent, scream, cry...or even tease, laugh and > joke when the mood strikes. We are here for you....and praying for you!! > > > Lots of hugs and prayers, Donelle > Caregiver to Glenn > > > Colon resection 6/03 removing 9 in. of colon including cancerous tumore and > 3 of 22 removed lymph nodes were also cancerous. > Infection set in at surgical site...Open wound for 2 months, chemo for 8 > months > Mets to Liver found 4/04, inoperable; one tumor too close to artery and vein > Chemo infiltration to chest 8/04 with severe side effects including severe > pain and muscle damage (permanent??) > 10/04 Severe lower ab pain unable to eat, colon shut down, hospitalization > w/morphine 8 days. Sent home with basically no diagnosis. Possibly the cancer > causing the pain. > Ascites (Fluid build-up) and Paracentesis (draining) on a regular weekly > basis > 11/09/04 on 5FU/Leu/Oxaliplatin/Avastin " cocktails " 46 hr. infusions > Mid Dec. 04 - CT. Scan shows largest tumor on liver has reduced 1/3, > remaining 11 tumors stable; no growth. Chemo is working...Yippee!! > 02/05 Continued bi-wkly Ascites and Paracentesis may mean chemo no longer > working. > Emergency CT. Scan performed. Tumors are reducing in size, some as much as > half!!! Chemo is working!!! > Found a blot clot in the vein going in to the liver!!! Waiting for MRI so > GI Dr. can decide to treat with meds or surgery. Onc. now believes the blood > clot is reason for the continuing Ascites. > March 04...Lovamax shots nightly to dissolve the clot and open the portal > vein going in to the liver, hoping the liver will function more normally. > Still not sure if blood clot or tumor. Why? No answers. > > ICU hospitalization twice..total of 9 days out of 14 for varices bleeding in > the esophogus. No chemo now for 6 wks. Drs., Liver specialists, and GI > specialists working on a plan. Ascites is doing more damage than chemo to Glenn's > body. Have to " take a chance " (Drs. words) and do the shunt surgery and > very SOON!! > > " Chemo Vacation " to build up Glenn's body for whatever!!! > > Liver Spec. does not agree with GI Dr. re: shunt surgery...now what?? > > TRYING TO KICK BUTT with this darn disease!!! > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 Welcome Sue... Goodness why they just stopped the chemo completely. Maybe they felt they got it all, thank goodness you had the scope and caught those polyps. Yes a 2nd opinion is needed here so you know for sure what it going on.... Chemo meds can be help off until one gets to felling better, and chemo meds can be adjusted so one does not have a reaction to the chem or at least a milder reaction. We are here for you.... Cheers Jolene Grandmommyandme@... wrote: > > In a message dated 9/5/2005 3:31:06 PM Eastern Standard Time, > suebutler45@... writes: > > Hello, Iam new here, Last April I went to emergency room, only to find > out that I had Colon Cancer in the 3rd stage, they removed 3 masses, > and 12 lympnodes, had a resection, took 5 chemo sessions, and could > not handle it. Was told my enzemes were to low to tolerate it, but was > offered nothing else. Have not been back to onocoligist. Went to > hospital last month for colonostomy, and had to have more polups > removed from rectum. Don't know what to expect from this point on, > hoping to get some help here, with people who have been thru this, > Thank- you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 > > > > > In a message dated 9/5/2005 3:31:06 PM Eastern Standard Time, > > suebutler45@y... writes: > > > > Hello, Iam new here, Last April I went to emergency room, only to find > > out that I had Colon Cancer in the 3rd stage, they removed 3 masses, > > and 12 lympnodes, had a resection, took 5 chemo sessions, and could > > not handle it. Was told my enzemes were to low to tolerate it, but was > > offered nothing else. Have not been back to onocoligist. Went to > > hospital last month for colonostomy, and had to have more polups > > removed from rectum. Don't know what to expect from this point on, > > hoping to get some help here, with people who have been thru this, > > Thank- you > >Thanks Jolene I stopped the chemo, was too sick, but looking for new doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 > > > > > In a message dated 9/5/2005 3:31:06 PM Eastern Standard Time, > > suebutler45@y... writes: > > > > Hello, Iam new here, Last April I went to emergency room, only to find > > out that I had Colon Cancer in the 3rd stage, they removed 3 masses, > > and 12 lympnodes, had a resection, took 5 chemo sessions, and could > > not handle it. Was told my enzemes were to low to tolerate it, but was > > offered nothing else. Have not been back to onocoligist. Went to > > hospital last month for colonostomy, and had to have more polups > > removed from rectum. Don't know what to expect from this point on, > > hoping to get some help here, with people who have been thru this, > > Thank- you > >Thanks Jolene I stopped the chemo, was too sick, but looking for new doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2005 Report Share Posted September 6, 2005 > > > > > In a message dated 9/5/2005 3:31:06 PM Eastern Standard Time, > > suebutler45@y... writes: > > > > Hello, Iam new here, Last April I went to emergency room, only to find > > out that I had Colon Cancer in the 3rd stage, they removed 3 masses, > > and 12 lympnodes, had a resection, took 5 chemo sessions, and could > > not handle it. Was told my enzemes were to low to tolerate it, but was > > offered nothing else. Have not been back to onocoligist. Went to > > hospital last month for colonostomy, and had to have more polups > > removed from rectum. Don't know what to expect from this point on, > > hoping to get some help here, with people who have been thru this, > > Thank- you > >Thanks Jolene I stopped the chemo, was too sick, but looking for new doctor. Quote Link to comment Share on other sites More sharing options...
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