CancerCompass message board discussion started by Saab2006 on 1/26/2007 http://www.cancercompass.com/message-board/message/all,9125,0.htm Sun, 07 Sep 2008 00:00:00 GMT Sun, 07 Sep 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom went for the usual remove the gall stone caught in bile duct procedure (she had jaundace).Earlier Cat scans, etcc...were good. Dr. came out and saw a form of bile duct cancer took initial biopsy which came back negativeand installed stint. Went back for a better look and more precise biopsy....found cncerous tumor in Bile duct near top of Pancreas. Didn't look like it spread to other organs. We made her an appointment at OSU for Whipple (she's in excellent heath at 71 yrs old.) Dr. Ellison did a scope right before surgery and backed out....he saw microscopic "sprinkles" on the lining (I forgot name) that surrounds that entire area. Also...on diaphram as well. The Dr. suggested Chemo/Radiation treatment to encourage remission. A couple of other idbits: Her CA-19 was well over 1000 when first diagnosed. Her test before surgery showed a reading aroud 600 (which is still really hight). Her bloodwork was all normal (red/white blood cells, liver enzymes, etc). Doctor said Liver looked really good. Anyway...the survival rate beyond 5 years is under 8% with chemo option..She has no choice. Any success stories for this type of situation I can relate to her? I got the feeling that the cancer is advanced...but it could be lots worse. She she's Oncologist Monday for consultation. The surgeon stated he has not seen a non surgical cure for this...but has seen really positive results with chemo....and highly suggested she gets treatment. We really would like Mom around for another 5 years...(or more)...she looks so healthy. Saab2006 Fri, 26 Jan 2007 00:00:00 GMT  On 1/26/2007 Saab2006 wrote:My mom went for the usual remove the gall stone caught in bile duct procedure (she had jaundace).Earlier Cat scans, etcc...were good. Dr. came out and saw a form of bile duct cancer took initial biopsy which came back negativeand installed stint. Went back for a better look and more precise biopsy....found cncerous tumor in Bile duct near top of Pancreas. Didn't look like it spread to other organs. We made her an appointment at OSU for Whipple (she's in excellent heath at 71 yrs old.) Dr. Ellison did a scope right before surgery and backed out....he saw microscopic "sprinkles" on the lining (I forgot name) that surrounds that entire area. Also...on diaphram as well. The Dr. suggested Chemo/Radiation treatment to encourage remission. A couple of other idbits: Her CA-19 was well over 1000 when first diagnosed. Her test before surgery showed a reading aroud 600 (which is still really hight). Her bloodwork was all normal (red/white blood cells, liver enzymes, etc). Doctor said Liver looked really good. Anyway...the survival rate beyond 5 years is under 8% with chemo option..She has no choice. Any success stories for this type of situation I can relate to her? I got the feeling that the cancer is advanced...but it could be lots worse. She she's Oncologist Monday for consultation. The surgeon stated he has not seen a non surgical cure for this...but has seen really positive results with chemo....and highly suggested she gets treatment. We really would like Mom around for another 5 years...(or more)...she looks so healthy.My mom was diagnosed w/bile duct cancer in Apr 2004 when she was 57 yrs old. She had jaundice so she went for a check up. She had surgery to see if a whipple was possible because the mri, ultrasound, ct & ercp was not definitive. Unfortunately, the cancer metastasized & the surgeon couldn't perform the whipple. He did remove all the cancer he could see & feel. He also did a bypass for her. After that my mom did radiation for 6weeks & began her chemo. She started on gemzar & continued for about  17 mos. During chemo, she took periodic CT's & it looked better & better. So in Sept 2005, the oncologist gave us an all clear. This cancer is rare & there was not enough info re:patients my mom's age. We thought it was a miracle. But in January of 2006, my mom's jaundice came back. They knew the cancer was back but they couldn't find it. They did the CT & even a PET Scan but they couldn't see anything. They just had a patient showing signs of the cancer. So my mom started back on Gemzar. This time though there was new info that Gemzar & Tarceva jointly helped kill cholangiocarcinoma. So my mom started on that. BUT one of the side effects of Tarceva is rash. My mom got it really bad. They were pustules on the top of her head. They were popping open. She also had it all over her face. The trauma of it was bad but it was also painful. She couldn't lay her head on her pillow when she slept. So she quit Tarceva & went on Gemzar only. A subsequent CT showed that the cancer was back which meant the Gemzar wasn't working anymore. So the oncologist put her on 5FU & leviquin (sp?). She didn't do this for long. She was very weak at this point. Her bloodwork showed her red & white blood cell levels were low. Also, around this time she got ascites. Her belly was distended. She was supposed to get periodic pericentesis but they left the tube in her w/a bag attached so that she didn't have to come to the hospital all the time. We would empty the fluid from her bag ourselves at home. When she was first diagnosed w/this cancer in 2004 they told us that studies showed patients usually get it back w/in  6 to 12mos. During 2004 & partly thru 2005 my mom was mountain climbing & being her active self. Most of her friends weren't even aware that she had cancer or that she was doing chemo. It was later that the chemo & the cancer took a stronger hold. My mom passed away in November 2006. So she survived almost 3 yrs. I'm sorry to be answering back in this way. Chemo was really hard. It was hard for my mom to go thru & hard for me to watch. My mom had a fighting spirit so if there was even a small chance that she could beat the cancer, she would have tried. But I wonder sometimes if it might have been better to just not do chemo & go into hospice & just manage the pain from the cancer & not add the pain from the chemo. Good luck w/your mom. They say hindsight is 20/20. It is so true. Even though I'm from a culture that is not physically demonstrative, I wish that I had hugged my mom every day & told her I loved her. I know she knew I loved her but I wish that I had openly acknowledged it. Cancer is horrible but knowing that you have it also gives you an opportunity to talk to your loved ones & let them know how you feel. Don't squander the opportunity like I did. Momsdaughter Sun, 28 Jan 2007 00:00:00 GMT  On 1/28/2007 Momsdaughter wrote: On 1/26/2007 Saab2006 wrote:My mom went for the usual remove the gall stone caught in bile duct procedure (she had jaundace).Earlier Cat scans, etcc...were good. Dr. came out and saw a form of bile duct cancer took initial biopsy which came back negativeand installed stint. Went back for a better look and more precise biopsy....found cncerous tumor in Bile duct near top of Pancreas. Didn't look like it spread to other organs. We made her an appointment at OSU for Whipple (she's in excellent heath at 71 yrs old.) Dr. Ellison did a scope right before surgery and backed out....he saw microscopic "sprinkles" on the lining (I forgot name) that surrounds that entire area. Also...on diaphram as well. The Dr. suggested Chemo/Radiation treatment to encourage remission. A couple of other idbits: Her CA-19 was well over 1000 when first diagnosed. Her test before surgery showed a reading aroud 600 (which is still really hight). Her bloodwork was all normal (red/white blood cells, liver enzymes, etc). Doctor said Liver looked really good. Anyway...the survival rate beyond 5 years is under 8% with chemo option..She has no choice. Any success stories for this type of situation I can relate to her? I got the feeling that the cancer is advanced...but it could be lots worse. She she's Oncologist Monday for consultation. The surgeon stated he has not seen a non surgical cure for this...but has seen really positive results with chemo....and highly suggested she gets treatment. We really would like Mom around for another 5 years...(or more)...she looks so healthy.My mom was diagnosed w/bile duct cancer in Apr 2004 when she was 57 yrs old. She had jaundice so she went for a check up. She had surgery to see if a whipple was possible because the mri, ultrasound, ct & ercp was not definitive. Unfortunately, the cancer metastasized & the surgeon couldn't perform the whipple. He did remove all the cancer he could see & feel. He also did a bypass for her. After that my mom did radiation for 6weeks & began her chemo. She started on gemzar & continued for about  17 mos. During chemo, she took periodic CT's & it looked better & better. So in Sept 2005, the oncologist gave us an all clear. This cancer is rare & there was not enough info re:patients my mom's age. We thought it was a miracle. But in January of 2006, my mom's jaundice came back. They knew the cancer was back but they couldn't find it. They did the CT & even a PET Scan but they couldn't see anything. They just had a patient showing signs of the cancer. So my mom started back on Gemzar. This time though there was new info that Gemzar & Tarceva jointly helped kill cholangiocarcinoma. So my mom started on that. BUT one of the side effects of Tarceva is rash. My mom got it really bad. They were pustules on the top of her head. They were popping open. She also had it all over her face. The trauma of it was bad but it was also painful. She couldn't lay her head on her pillow when she slept. So she quit Tarceva & went on Gemzar only. A subsequent CT showed that the cancer was back which meant the Gemzar wasn't working anymore. So the oncologist put her on 5FU & leviquin (sp?). She didn't do this for long. She was very weak at this point. Her bloodwork showed her red & white blood cell levels were low. Also, around this time she got ascites. Her belly was distended. She was supposed to get periodic pericentesis but they left the tube in her w/a bag attached so that she didn't have to come to the hospital all the time. We would empty the fluid from her bag ourselves at home. When she was first diagnosed w/this cancer in 2004 they told us that studies showed patients usually get it back w/in  6 to 12mos. During 2004 & partly thru 2005 my mom was mountain climbing & being her active self. Most of her friends weren't even aware that she had cancer or that she was doing chemo. It was later that the chemo & the cancer took a stronger hold. My mom passed away in November 2006. So she survived almost 3 yrs. I'm sorry to be answering back in this way. Chemo was really hard. It was hard for my mom to go thru & hard for me to watch. My mom had a fighting spirit so if there was even a small chance that she could beat the cancer, she would have tried. But I wonder sometimes if it might have been better to just not do chemo & go into hospice & just manage the pain from the cancer & not add the pain from the chemo. Good luck w/your mom. They say hindsight is 20/20. It is so true. Even though I'm from a culture that is not physically demonstrative, I wish that I had hugged my mom every day & told her I loved her. I know she knew I loved her but I wish that I had openly acknowledged it. Cancer is horrible but knowing that you have it also gives you an opportunity to talk to your loved ones & let them know how you feel. Don't squander the opportunity like I did.My mom has this awful cancer and it has spread.  Chemo is not proven to help this aggressive cancer but she went through one low dose round and after Christmas tried to take chemo pills...they really knocked her down, she had to stop after just one week and she has never recovered her strength.  She is so strong and such a fighter, she wants to believe that chemo will cure her so she is trying to get her strength back to take it again.  She talks about quality of life  and I wish she would not take chemo and let me ask Hospice to come in and help. I know how you feel and I wish I could talk to her about it but I'm afraid to.  I think she will be upset and mad at me for acknowledging that she will not recover and for saying I don't want her to take chemo.  She's going in for a second time to try and stop bleeding from a tumor on her kidney on the 26th....after 2 major surgeries that removed 60% of her liver and most of her pancreas.  I really wish I could get hospice to help and I want her to live the best life she can while she can.  Dian2 Fri, 16 Feb 2007 00:00:00 GMT  On 2/16/2007 Dian2 wrote: On 1/28/2007 Momsdaughter wrote: On 1/26/2007 Saab2006 wrote:My mom went for the usual remove the gall stone caught in bile duct procedure (she had jaundace).Earlier Cat scans, etcc...were good. Dr. came out and saw a form of bile duct cancer took initial biopsy which came back negativeand installed stint. Went back for a better look and more precise biopsy....found cncerous tumor in Bile duct near top of Pancreas. Didn't look like it spread to other organs. We made her an appointment at OSU for Whipple (she's in excellent heath at 71 yrs old.) Dr. Ellison did a scope right before surgery and backed out....he saw microscopic "sprinkles" on the lining (I forgot name) that surrounds that entire area. Also...on diaphram as well. The Dr. suggested Chemo/Radiation treatment to encourage remission. A couple of other idbits: Her CA-19 was well over 1000 when first diagnosed. Her test before surgery showed a reading aroud 600 (which is still really hight). Her bloodwork was all normal (red/white blood cells, liver enzymes, etc). Doctor said Liver looked really good. Anyway...the survival rate beyond 5 years is under 8% with chemo option..She has no choice. Any success stories for this type of situation I can relate to her? I got the feeling that the cancer is advanced...but it could be lots worse. She she's Oncologist Monday for consultation. The surgeon stated he has not seen a non surgical cure for this...but has seen really positive results with chemo....and highly suggested she gets treatment. We really would like Mom around for another 5 years...(or more)...she looks so healthy.My mom was diagnosed w/bile duct cancer in Apr 2004 when she was 57 yrs old. She had jaundice so she went for a check up. She had surgery to see if a whipple was possible because the mri, ultrasound, ct & ercp was not definitive. Unfortunately, the cancer metastasized & the surgeon couldn't perform the whipple. He did remove all the cancer he could see & feel. He also did a bypass for her. After that my mom did radiation for 6weeks & began her chemo. She started on gemzar & continued for about  17 mos. During chemo, she took periodic CT's & it looked better & better. So in Sept 2005, the oncologist gave us an all clear. This cancer is rare & there was not enough info re:patients my mom's age. We thought it was a miracle. But in January of 2006, my mom's jaundice came back. They knew the cancer was back but they couldn't find it. They did the CT & even a PET Scan but they couldn't see anything. They just had a patient showing signs of the cancer. So my mom started back on Gemzar. This time though there was new info that Gemzar & Tarceva jointly helped kill cholangiocarcinoma. So my mom started on that. BUT one of the side effects of Tarceva is rash. My mom got it really bad. They were pustules on the top of her head. They were popping open. She also had it all over her face. The trauma of it was bad but it was also painful. She couldn't lay her head on her pillow when she slept. So she quit Tarceva & went on Gemzar only. A subsequent CT showed that the cancer was back which meant the Gemzar wasn't working anymore. So the oncologist put her on 5FU & leviquin (sp?). She didn't do this for long. She was very weak at this point. Her bloodwork showed her red & white blood cell levels were low. Also, around this time she got ascites. Her belly was distended. She was supposed to get periodic pericentesis but they left the tube in her w/a bag attached so that she didn't have to come to the hospital all the time. We would empty the fluid from her bag ourselves at home. When she was first diagnosed w/this cancer in 2004 they told us that studies showed patients usually get it back w/in  6 to 12mos. During 2004 & partly thru 2005 my mom was mountain climbing & being her active self. Most of her friends weren't even aware that she had cancer or that she was doing chemo. It was later that the chemo & the cancer took a stronger hold. My mom passed away in November 2006. So she survived almost 3 yrs. I'm sorry to be answering back in this way. Chemo was really hard. It was hard for my mom to go thru & hard for me to watch. My mom had a fighting spirit so if there was even a small chance that she could beat the cancer, she would have tried. But I wonder sometimes if it might have been better to just not do chemo & go into hospice & just manage the pain from the cancer & not add the pain from the chemo. Good luck w/your mom. They say hindsight is 20/20. It is so true. Even though I'm from a culture that is not physically demonstrative, I wish that I had hugged my mom every day & told her I loved her. I know she knew I loved her but I wish that I had openly acknowledged it. Cancer is horrible but knowing that you have it also gives you an opportunity to talk to your loved ones & let them know how you feel. Don't squander the opportunity like I did.My mom has this awful cancer and it has spread.  Chemo is not proven to help this aggressive cancer but she went through one low dose round and after Christmas tried to take chemo pills...they really knocked her down, she had to stop after just one week and she has never recovered her strength.  She is so strong and such a fighter, she wants to believe that chemo will cure her so she is trying to get her strength back to take it again.  She talks about quality of life  and I wish she would not take chemo and let me ask Hospice to come in and help. I know how you feel and I wish I could talk to her about it but I'm afraid to.  I think she will be upset and mad at me for acknowledging that she will not recover and for saying I don't want her to take chemo.  She's going in for a second time to try and stop bleeding from a tumor on her kidney on the 26th....after 2 major surgeries that removed 60% of her liver and most of her pancreas.  I really wish I could get hospice to help and I want her to live the best life she can while she can. My mom was diagnoses back in June and has been on chemo drip and pills.  Bad thing is that she is a frail 75 year old and doesnt take well to the meds.  However, the cancer has nor spread.  I feel frustrated because in order for her to stay alive she must be on this medication pretty much forever.  Darned if you do and if you dont i guess.  Hang in  there all, keep posting, maybe we can keep each other's spirits up  Chrissy m Wed, 28 Feb 2007 00:00:00 GMT