My Case- Any Helpful Input Would Be Appreciated

In June of 2007 I experienced nausea that would not go away .  After about a week I went to my family doctor and he djd blood tests and my billary levels were very high.   He scheduled a CAT scan and MRI and an appointment with a gastroenterologist.   He suspected a Klatskin tumor after he read the results but was not sure.  They scheduled an endoscopy and put a stent in the bile duct to open it up and took tissue swabbings to check for cancer.  The stent did allow bile duct to flow and nausea and symptoms subsided some.  The tests did not show a malignancy.  However the doctors felt that a tumor was causing the bile duct to close off.  They scheduled surgery for the first week of August.   They removed a 2 cm or so tumor and it was malignant.   The doctor came to me after surgery to tell me they felt that they had gotten it all, but 2 days after came to report that pathology had made a mistake during surgery and the margins were not clear as reported.  This was devastating, as they took very little of my liver and the doctor was prepared to do so to increase my chances of a cure.   Well, he was still hopeful and told me that radiation and chemo could still clean up and cancer left and he was still positive.  I had a 3 week stay in the hospital complicated by serious bleeding and then an unexplained (God's help I believe) stopping of the internal bleeding.  After 3 painful weeks in the hospital, I had a painful 3 week recovery out of the hospital.   I had lost over 40 pounds since June and was having a difficult time regaining, however I did regain it and am up to close to normal weight at this time .  I had 5 weeks of chemo and concurrent radiation.  After a rest period of 30 days I had brachy raditation therapy (not paid for by insurance unfortunately), for 3 sessions over 3 weeks ending just before Christmas 2007.   The doctor has done blood work and all seems okay .  My tumor count was 18.  I am not sure if that is okay or not.  Hopefully it is.  My oncologist has recommended an agressive approach and now is recommending 3 or 4 months of Gemzar.  Does anyone know if this is the course I should take?  He says if the cancer comes back, it will be stage 4 and I am in big trouble.   I am kinda tired to be honest and not sure if this is the right step for me. I have two drain tubes that I flush twice a day and they have not yet been replaced as they seem to flush fine.   I have a fungal/or infection on one of them now and it is causing me discomfort, but it seems to be responding to the creme the surgeon recommended.   Any input folks?  Thanks alot.   Jeff

 

On 1/26/2008 Godzgud wrote:

In June of 2007 I experienced nausea that would not go away .  After about a week I went to my family doctor and he djd blood tests and my billary levels were very high.   He scheduled a CAT scan and MRI and an appointment with a gastroenterologist.   He suspected a Klatskin tumor after he read the results but was not sure.  They scheduled an endoscopy and put a stent in the bile duct to open it up and took tissue swabbings to check for cancer.  The stent did allow bile duct to flow and nausea and symptoms subsided some.  The tests did not show a malignancy.  However the doctors felt that a tumor was causing the bile duct to close off.  They scheduled surgery for the first week of August.   They removed a 2 cm or so tumor and it was malignant.   The doctor came to me after surgery to tell me they felt that they had gotten it all, but 2 days after came to report that pathology had made a mistake during surgery and the margins were not clear as reported.  This was devastating, as they took very little of my liver and the doctor was prepared to do so to increase my chances of a cure.   Well, he was still hopeful and told me that radiation and chemo could still clean up and cancer left and he was still positive.  I had a 3 week stay in the hospital complicated by serious bleeding and then an unexplained (God's help I believe) stopping of the internal bleeding.  After 3 painful weeks in the hospital, I had a painful 3 week recovery out of the hospital.   I had lost over 40 pounds since June and was having a difficult time regaining, however I did regain it and am up to close to normal weight at this time .  I had 5 weeks of chemo and concurrent radiation.  After a rest period of 30 days I had brachy raditation therapy (not paid for by insurance unfortunately), for 3 sessions over 3 weeks ending just before Christmas 2007.   The doctor has done blood work and all seems okay .  My tumor count was 18.  I am not sure if that is okay or not.  Hopefully it is.  My oncologist has recommended an agressive approach and now is recommending 3 or 4 months of Gemzar.  Does anyone know if this is the course I should take?  He says if the cancer comes back, it will be stage 4 and I am in big trouble.   I am kinda tired to be honest and not sure if this is the right step for me. I have two drain tubes that I flush twice a day and they have not yet been replaced as they seem to flush fine.   I have a fungal/or infection on one of them now and it is causing me discomfort, but it seems to be responding to the creme the surgeon recommended.   Any input folks?  Thanks alot.   Jeff

 I was diagnosed with stage 4 bile duct cancer on April 4, 2007.  Surgery can not be done when it is stage 4.  Have been on Genzar all these months since then. It will give you extra time, but no cure.  I'm thinking of ending all the chemo.  My tumor marker jumped from 21 to 150 this past month.  Chemo is no fun.  It is like going to a gas station, putting the gas hose pump into your mouth, drinking a quart of gasoline. Do this for 14 days in a row. Take a rest for 7 days. Then start the cycle all over again. Do this for about 8 months straight.  Without it, your chances are about 4  months. With it possibly 9-12 months. So the choice is yours how much time you need to get things in order with your family & loved ones & with God. Live each day one day at a time. Enjoy each day that you are given.  Prepare yourself for eternity. Jesus paid the price for everything you have ever done wrong. All you have to do is admit your wrong doing to Him & accept His free gift of everlasting life in beautiful heaven.

 

Before you make a decision on how to proceed, please take a look at the following website. http://www.thedcasite.com/DCA_reports.html My medical/alternative doctor is now recommending and prescribing this for some of his cancer patients. He has had many successes over the years treating a variety of cancers and I know he would not be recommending this treatment without having done a thorough investigation of it's efficacy and safety. Best of luck on your journey. Let me know if you would like further information.

On 1/26/2008 Godzgud wrote:

In June of 2007 I experienced nausea that would not go away .  After about a week I went to my family doctor and he djd blood tests and my billary levels were very high.   He scheduled a CAT scan and MRI and an appointment with a gastroenterologist.   He suspected a Klatskin tumor after he read the results but was not sure.  They scheduled an endoscopy and put a stent in the bile duct to open it up and took tissue swabbings to check for cancer.  The stent did allow bile duct to flow and nausea and symptoms subsided some.  The tests did not show a malignancy.  However the doctors felt that a tumor was causing the bile duct to close off.  They scheduled surgery for the first week of August.   They removed a 2 cm or so tumor and it was malignant.   The doctor came to me after surgery to tell me they felt that they had gotten it all, but 2 days after came to report that pathology had made a mistake during surgery and the margins were not clear as reported.  This was devastating, as they took very little of my liver and the doctor was prepared to do so to increase my chances of a cure.   Well, he was still hopeful and told me that radiation and chemo could still clean up and cancer left and he was still positive.  I had a 3 week stay in the hospital complicated by serious bleeding and then an unexplained (God's help I believe) stopping of the internal bleeding.  After 3 painful weeks in the hospital, I had a painful 3 week recovery out of the hospital.   I had lost over 40 pounds since June and was having a difficult time regaining, however I did regain it and am up to close to normal weight at this time .  I had 5 weeks of chemo and concurrent radiation.  After a rest period of 30 days I had brachy raditation therapy (not paid for by insurance unfortunately), for 3 sessions over 3 weeks ending just before Christmas 2007.   The doctor has done blood work and all seems okay .  My tumor count was 18.  I am not sure if that is okay or not.  Hopefully it is.  My oncologist has recommended an agressive approach and now is recommending 3 or 4 months of Gemzar.  Does anyone know if this is the course I should take?  He says if the cancer comes back, it will be stage 4 and I am in big trouble.   I am kinda tired to be honest and not sure if this is the right step for me. I have two drain tubes that I flush twice a day and they have not yet been replaced as they seem to flush fine.   I have a fungal/or infection on one of them now and it is causing me discomfort, but it seems to be responding to the creme the surgeon recommended.   Any input folks?  Thanks alot.   Jeff

I think you have been incredibly brave. I would encourage you to get more information from your doctors about the tumor markers.  You said it was 18--but you absolutely need to know if that is good or not.  There is a great oncologist in New York who specializes in Bile Duct cancer treatment.  If you would like his name and contact please let me know.  I would work more closely with your oncologist and explore what he/she would do if given your diagnosis.  Be strong and have faith in your body's desire to heal.  I am sure you are tired--do you have loved ones/family that can help you pursue your course of action?  Best to you and you will be in my thoughts.

lisa