Gallbladder Cancer Stage 4

Lily50

KatieDeBakey said:

My Dear Mother...
This is my first post. Or so I think. Not sure how to use this. My mother has been diagnosed with stage IV gall bladder cancer and just started undergoing chemo a few days ago. If she does do well, do you think we could have her gall bladder taken out? I could give her half of my liver and a kidney if she needs one, my sister could give her another kidney. And I saw a clinical trial about zapping spinal tumors with radiation and chemo to get rid of them. She could also have the affected lymph nodes removed and that would just leave her with a little bit of pancreatic cancer. Just a small spot. I know this sounds WAAAAY out there but, if you or anyone has heard of success with this, PLEASE let me know and direct us to the right people. If not, I will let you know what I find out so at least some progress can be made with this horrible cancer. It's great to meet you all. I wish it were under better circumstances.

Your Mother
You did just fine on your posting. I so sorry about your mother. This is a terrible disease. What type of Chemo is she receiving and how often? This can be a very aggressive cancer and treatment will need to be aggressive. She has many options in front of her and you need to be comfortable with the doctor's that are treating your mother. I do believe in second opinions. The liver is one of the organs in the body that can re-generate after surgery if the damage isn't too extensive. When the cancer has spread to other organs it is best to find the most qualified surgeon possible. It isn't really way out there it is just that there is so much information on the Internet and some of it is old and outdated. I am a survivor-4 years and I had a great Liver surgeon at UCLA. Read my profile and you will find that your thoughts are not WAAAAY out there. I have heard of many different stories accross the country about great places. Take the time to read all the posts you can, people are very forthcoming when they are being treated well for this disease. East Coast, West Coast, Midwest, Cancer Treatment Centers of America (CTCA) just let us know what side of the country you are in and we will try to help.
You and your Mother are in my prayers.
Lily

KatieDeBakey

Lily50 said:

Your Mother
You did just fine on your posting. I so sorry about your mother. This is a terrible disease. What type of Chemo is she receiving and how often? This can be a very aggressive cancer and treatment will need to be aggressive. She has many options in front of her and you need to be comfortable with the doctor's that are treating your mother. I do believe in second opinions. The liver is one of the organs in the body that can re-generate after surgery if the damage isn't too extensive. When the cancer has spread to other organs it is best to find the most qualified surgeon possible. It isn't really way out there it is just that there is so much information on the Internet and some of it is old and outdated. I am a survivor-4 years and I had a great Liver surgeon at UCLA. Read my profile and you will find that your thoughts are not WAAAAY out there. I have heard of many different stories accross the country about great places. Take the time to read all the posts you can, people are very forthcoming when they are being treated well for this disease. East Coast, West Coast, Midwest, Cancer Treatment Centers of America (CTCA) just let us know what side of the country you are in and we will try to help.
You and your Mother are in my prayers.
Lily

Thanks, Lily
Thank you for your quick response, Lily. We are actually in Austin, Texas. I have only found one clinical trial near us that has to do with gastrointestinal cancers (that my mother would qualify for) and it is in San Antonio. I'm not sure about the type of chemo she is receiving. I'll be taking her to her second appointment for it on Thursday and I will have PLENTY of questions for the doctor. I was going to ask him about what I mentioned above and I will also ask him about the type of chemo she is already receiving. I'm so glad that you made it and that you are now helping others! THANKS, LILY! = ) Off to check out your profile!

klnh0126

Lily50 said:

Your Dad
My heart goes out to you for the difficulty in dealing with this disease. I have a question for you, since he was just diagnosed recently have you gotten a second,third,fourth,etc opinion? No two doctors ever say the same thing. There are many treatment centers out there who are willing to go the extra mile if you are willing to travel down this hard road. This type of cancer is very aggressive and it is right up there with pancreatic cancer. There isn't alot of information out there because most people were in the advanced stages when diagnosed including myself. It can cause severe pain and nausea that you wouldn't think possible. I hope that your Dad is able to have the hospital stablize him so that he can explore some options. There is hope and treatment out there you just have to find it. I'll pray for him.

My Mom with gallbladder cancer also
Lily50

My mom was diagnosed with gallbladder cancer stage IV this past Oct. It was discovered through a routine gallbladder removal. An attempt to remove remaining cancer and resection was attempted but during surgery it was discovered it spread to the abdomen so surgery was no longer an option. She is undergoing aggressive Chemo every 2 weeks. Oxaliplatin and Gemzar and handling it better that I expected. We were so concerned to get started with Chemo so it wouldn't spread further that we didn't really explore another opinion. Everthing you read is so bad and getting an appointment can take so long we hopped right into the chemo. Have you heard of people eventually becoming candidates for surgery? Her oncologists says she will never be a candidate. Can you share more details of your personal experience. Where had your cancer spread and was your gallbladder removed? I'm encouraged by your words.

Tracy R.

klnh0126 said:

My Mom with gallbladder cancer also
Lily50

My mom was diagnosed with gallbladder cancer stage IV this past Oct. It was discovered through a routine gallbladder removal. An attempt to remove remaining cancer and resection was attempted but during surgery it was discovered it spread to the abdomen so surgery was no longer an option. She is undergoing aggressive Chemo every 2 weeks. Oxaliplatin and Gemzar and handling it better that I expected. We were so concerned to get started with Chemo so it wouldn't spread further that we didn't really explore another opinion. Everthing you read is so bad and getting an appointment can take so long we hopped right into the chemo. Have you heard of people eventually becoming candidates for surgery? Her oncologists says she will never be a candidate. Can you share more details of your personal experience. Where had your cancer spread and was your gallbladder removed? I'm encouraged by your words.

Treatment
My husband, best friend, lover, companion, my life, soul mate; was diagnosed with stage IV gallbladder cancer on Oct. 23, 2009 and told the prognosis was 12 months at best, could not remove gallbladder as had metastasized to stomach lining. We did the same thing, hurried into treatment as the oncologist stated that it was a fast growing, aggressive cancer and needed to be treated as such, while also stating that surgery was not an option that the treatment would be for palliative only (reduce symptoms the cancer would cause and extend his life hopefully for a few extra months). He was put on Xeloda pills (2 AM and 2 PM) and after 4 days on that - while still taking the Xeloda - outpatient chemo of gemzar and taxatere, continued taking Xeloda and same chemo the following week, then an overnight chemo the next week with cisplatin added. Had his first cat scan early January which showed some recession and tumor shrinkage so we asked if he could get his gallbladder out at that time as I had read that was the only chance for survival. The oncologist stated that he could get it out but that she highly recommended that he did not as there would be too much chance of infection and that even if he had it out the prognosis would still be the same. She recommended continuing on another round of the same and to have another cat scan early to mid April when the 2nd complete round is done. Should we have pushed more for the gallbladder to be removed? My husband's cancer was written down as "metastic adenocarcinoma of biliary origin". He turned 54 in December and I am 50...so close to our "Golden Years" together with plans of traveling - finally - after raising 6 children. I cannot lose him!! Just ordered the Gerson Therapy program of dvd's and our new Health Master has just arrived. I will be watching the dvd's and buying organic fruit and vegetables to make into fresh juices that he must drink all day. Has anyone else tried this? Results? He has been pain free, still active and eats a lot to keep his weight on even when he says the food tastes like metal he still eats...he is a fighter and so am I.

justne

Tracy R. said:

Treatment
My husband, best friend, lover, companion, my life, soul mate; was diagnosed with stage IV gallbladder cancer on Oct. 23, 2009 and told the prognosis was 12 months at best, could not remove gallbladder as had metastasized to stomach lining. We did the same thing, hurried into treatment as the oncologist stated that it was a fast growing, aggressive cancer and needed to be treated as such, while also stating that surgery was not an option that the treatment would be for palliative only (reduce symptoms the cancer would cause and extend his life hopefully for a few extra months). He was put on Xeloda pills (2 AM and 2 PM) and after 4 days on that - while still taking the Xeloda - outpatient chemo of gemzar and taxatere, continued taking Xeloda and same chemo the following week, then an overnight chemo the next week with cisplatin added. Had his first cat scan early January which showed some recession and tumor shrinkage so we asked if he could get his gallbladder out at that time as I had read that was the only chance for survival. The oncologist stated that he could get it out but that she highly recommended that he did not as there would be too much chance of infection and that even if he had it out the prognosis would still be the same. She recommended continuing on another round of the same and to have another cat scan early to mid April when the 2nd complete round is done. Should we have pushed more for the gallbladder to be removed? My husband's cancer was written down as "metastic adenocarcinoma of biliary origin". He turned 54 in December and I am 50...so close to our "Golden Years" together with plans of traveling - finally - after raising 6 children. I cannot lose him!! Just ordered the Gerson Therapy program of dvd's and our new Health Master has just arrived. I will be watching the dvd's and buying organic fruit and vegetables to make into fresh juices that he must drink all day. Has anyone else tried this? Results? He has been pain free, still active and eats a lot to keep his weight on even when he says the food tastes like metal he still eats...he is a fighter and so am I.

Your husband
I see that you and some others have written about the Dr's not doing surgery. Why are they not doing surgery? When they found my mom's cancer they took her gallbladder out right away even thou it had already spread to her abdominal lining, belly button, lymph nodes and had brushed the liver. AS I'm sure many people have told you already keep get 2nd and 3rd opinions if needed. My prayers are with your family.

Terri

Tracy R.

justne said:

Your husband
I see that you and some others have written about the Dr's not doing surgery. Why are they not doing surgery? When they found my mom's cancer they took her gallbladder out right away even thou it had already spread to her abdominal lining, belly button, lymph nodes and had brushed the liver. AS I'm sure many people have told you already keep get 2nd and 3rd opinions if needed. My prayers are with your family.

Terri

No Surgery
The reason we were given was that the cancer had spread too much and that he has 12 months to live. When we heard after first round of treatment that the cat scan showed some recession and small amount of tumor shrinkage, the first thing my husband asked was if he could have the gallbladder removed. The oncologist stated that the chance of infection was a higher risk than not removing the gallbladder and that even if he took that chance that the prognosis would still be the same (12 months). We did have one other opinion before he started chemo and they said the same prognosis so we stayed with the closer oncologist. We contacted Mayo Clinic when we received the news on the cat scan and the present oncologist did not want to remove the gallbladder. Mayo Clinic asked for my husband's treatment regimen and told me that our oncologist was working outside of the box and they would not be able to the same aggressive treatment approach and that we should stay with her protocol at this time because, if it isn't broke - don't fix it - in other words since the treatment had shown some recession stay with the same. I asked about having my husband come in to see if they may consider removing the gallbladder at Mayo Clinic and they suggested going with the same treatment and waiting for the next cat scan in April first. I get so frustrated and scared because they act like a couple more months is no big thing...but to us it is! And we may not even be in this bad of a situation had the doctor's done a better job at finding what was wrong to begin with. My husband's first doctor appt. was in June of 09 with stomach pain. Many, many tests and being sent to the next "specialist", to find gallbladder cancer stage IV the end of October. He had a cat scan (upper and lower) that showed seeding in the right ascending, thickened wall in gallbladder and appendix that was enlarged - they scheduled him for colonoscopy and told us probably 70% chance it is colon cancer. When that was negative, checked for prostate cancer, urine track, so many tests that were always scheduled 2 weeks or more apart. One specialist told him that everything pointed to diverticulitis and gave a prescription for antibiotic and to take for one month and come back! We wasted an entire month going on that specialists say. So when they say to wait now, I panic and do not trust anyone's advice, so came on here to have someone tell me what to do next. Terri - THANK YOU for your prayers!! There is strength in prayers...
did your mother have stage IV also? was she given an original prognosis that she beat? hope that she is doing well at this time!

justne

Tracy R. said:

No Surgery
The reason we were given was that the cancer had spread too much and that he has 12 months to live. When we heard after first round of treatment that the cat scan showed some recession and small amount of tumor shrinkage, the first thing my husband asked was if he could have the gallbladder removed. The oncologist stated that the chance of infection was a higher risk than not removing the gallbladder and that even if he took that chance that the prognosis would still be the same (12 months). We did have one other opinion before he started chemo and they said the same prognosis so we stayed with the closer oncologist. We contacted Mayo Clinic when we received the news on the cat scan and the present oncologist did not want to remove the gallbladder. Mayo Clinic asked for my husband's treatment regimen and told me that our oncologist was working outside of the box and they would not be able to the same aggressive treatment approach and that we should stay with her protocol at this time because, if it isn't broke - don't fix it - in other words since the treatment had shown some recession stay with the same. I asked about having my husband come in to see if they may consider removing the gallbladder at Mayo Clinic and they suggested going with the same treatment and waiting for the next cat scan in April first. I get so frustrated and scared because they act like a couple more months is no big thing...but to us it is! And we may not even be in this bad of a situation had the doctor's done a better job at finding what was wrong to begin with. My husband's first doctor appt. was in June of 09 with stomach pain. Many, many tests and being sent to the next "specialist", to find gallbladder cancer stage IV the end of October. He had a cat scan (upper and lower) that showed seeding in the right ascending, thickened wall in gallbladder and appendix that was enlarged - they scheduled him for colonoscopy and told us probably 70% chance it is colon cancer. When that was negative, checked for prostate cancer, urine track, so many tests that were always scheduled 2 weeks or more apart. One specialist told him that everything pointed to diverticulitis and gave a prescription for antibiotic and to take for one month and come back! We wasted an entire month going on that specialists say. So when they say to wait now, I panic and do not trust anyone's advice, so came on here to have someone tell me what to do next. Terri - THANK YOU for your prayers!! There is strength in prayers...
did your mother have stage IV also? was she given an original prognosis that she beat? hope that she is doing well at this time!

Tracy
All I can say is if you are not happy with your Dr. take your husband someplace else. Keep going til you are satisfied with what they have offered you in the way of treatment. I can fully relate with the wait and see that so many Dr.'s seem to say. It's fustrating on our end to not see our love ones getting seen more often. I will also say that I can understand their fear of infection. Sadly my mom passed away in Nov. and We feel alot of it had to do with an infection. She had a port put in for Chemo and it became infected. The Dr. and the infectious disease Dr.'s did not agree on this and my mom was sent home 1 week later with what we believe was an infected port. she was back in 1 week later and never left the hospital again until she passed away with many complications. I truly do not feel it was the cancer that got her I feel it was the infection that made things worse. So As I said keep going with your gut feeling. If you are not happy keep seeking out the best care for your husband. My mom was stage IV and was never given a prognosis.

Tracy R.

justne said:

Tracy
All I can say is if you are not happy with your Dr. take your husband someplace else. Keep going til you are satisfied with what they have offered you in the way of treatment. I can fully relate with the wait and see that so many Dr.'s seem to say. It's fustrating on our end to not see our love ones getting seen more often. I will also say that I can understand their fear of infection. Sadly my mom passed away in Nov. and We feel alot of it had to do with an infection. She had a port put in for Chemo and it became infected. The Dr. and the infectious disease Dr.'s did not agree on this and my mom was sent home 1 week later with what we believe was an infected port. she was back in 1 week later and never left the hospital again until she passed away with many complications. I truly do not feel it was the cancer that got her I feel it was the infection that made things worse. So As I said keep going with your gut feeling. If you are not happy keep seeking out the best care for your husband. My mom was stage IV and was never given a prognosis.

Thank You
Thank you so much for your reply, it gives me the strength to go on. I was so sorry to hear of your mother's passing. It breaks my heart sitting here typing away and not knowing who is on the other end and what they have gone through themselves. Very, very sorry. Peace Be With You and Your Family. Thank you for remaining to come online and help others, I am sure that your mother is smiling down at you as you type away.

Lily50

KatieDeBakey said:

Thanks, Lily
Thank you for your quick response, Lily. We are actually in Austin, Texas. I have only found one clinical trial near us that has to do with gastrointestinal cancers (that my mother would qualify for) and it is in San Antonio. I'm not sure about the type of chemo she is receiving. I'll be taking her to her second appointment for it on Thursday and I will have PLENTY of questions for the doctor. I was going to ask him about what I mentioned above and I will also ask him about the type of chemo she is already receiving. I'm so glad that you made it and that you are now helping others! THANKS, LILY! = ) Off to check out your profile!

Your Mother
Hi Katie,

I currently talk to two other caregivers that are in Dallas, Texas. They are gwc345 (her mother) and LisaR3159 (her friend). They might have some suggestions for you since they are kinda in your area. Send them a private message and let me know if you get no response. I don't know how often they come to this site as they now just Email me at LGregg6293@Aol.Com. We tend to have long conversations and it just is easier. If you would like to Email me just put ACS-CSN in the subject line so that if it ends up in Spam I can add you to my contact list. Hope Thursday went well and wasn't too overwhelming. Never stop asking questions. If you don't help your mother be her own health advocate then she won't feel that she is in control of this situation. Ask me anything and I will try to help the best I can.
Take Care
Lily

Lily50

Tracy R. said:

Thank You
Thank you so much for your reply, it gives me the strength to go on. I was so sorry to hear of your mother's passing. It breaks my heart sitting here typing away and not knowing who is on the other end and what they have gone through themselves. Very, very sorry. Peace Be With You and Your Family. Thank you for remaining to come online and help others, I am sure that your mother is smiling down at you as you type away.

Your Husband
Hi Tracy,

So sorry to hear about your husband, This is one of the most difficult times in your life. Don't always believe what the doctor's tell you, trust yourself and get second and third opinions if necessary. I was given the prognosis of 2 weeks, 2 months, and if I was lucky 2 years that was in Dec 2005. That was 4 years ago and I never believed in my heart that I wouldn't be around to see my child grow up and have her own children. Sounds like he is receiving aggressive treatment for an aggressive cancer. I too had a agressive treatment. The fact that the turmor is shrinking means that the chemo is working. It does become a waiting game just to finally get a surgeon who will take a chance. I went out of state three times before they decided that I was a good enough candiate for a sucessfully surgery. My husband and I wouldn't take no for an answer even though every trip was heartbreaking. It took 11 months of Chemo before I could have the surgery. Then an additional three months of Chemo after the surgery. But it all was worth it to have my life given back to me even though it is a different life than the one I had. It is better. The Health Master is a great product. Fruits,vegtables, lean meats and fish are the way to go. The metal taste is from the Chemo and won't go away as long as you are receiving Chemo. I'm glad he and you are fighters because that is what you need to be to beat this monster. I love to hear that you have an oncologist that is working outside the box. You need to have a doctor right along side of you that once they know that you are willing to go to the edge, they will be right there with you. This disease will teach you patience and perserverence. Everyday becomes a blessing.
You and your husband are in my prayers.
Lily

Lily50

justne said:

Tracy
All I can say is if you are not happy with your Dr. take your husband someplace else. Keep going til you are satisfied with what they have offered you in the way of treatment. I can fully relate with the wait and see that so many Dr.'s seem to say. It's fustrating on our end to not see our love ones getting seen more often. I will also say that I can understand their fear of infection. Sadly my mom passed away in Nov. and We feel alot of it had to do with an infection. She had a port put in for Chemo and it became infected. The Dr. and the infectious disease Dr.'s did not agree on this and my mom was sent home 1 week later with what we believe was an infected port. she was back in 1 week later and never left the hospital again until she passed away with many complications. I truly do not feel it was the cancer that got her I feel it was the infection that made things worse. So As I said keep going with your gut feeling. If you are not happy keep seeking out the best care for your husband. My mom was stage IV and was never given a prognosis.

Your Mom
Your Mom is in a better place and no longer in pain. I'm sorry for your loss but God's hand reached down and pulled her up to be with him. I'm so glad that you are supportive to others on this board and working through your grief. It takes a very strong individual to do something like this. I agree with Tracy, your mother is smiling down on you and is very proud of you. I agree with you about the infection. My sister too had an infection along with an allergic reaction to her port. The doctor's don't tell you about this because it doesn't happen often. My sister made the doctor's remove the port as she knew her own body and once it was taken out the infection went away with antibotics. She completed her Chemo directly into her veins. She was lucky and I feel that you have to be your own advocate for your treatment. You are giving excellent advice to others so I hope you will continue to do so.
Take Care
Lily

Tracy R.

Lily50 said:

Your Husband
Hi Tracy,

So sorry to hear about your husband, This is one of the most difficult times in your life. Don't always believe what the doctor's tell you, trust yourself and get second and third opinions if necessary. I was given the prognosis of 2 weeks, 2 months, and if I was lucky 2 years that was in Dec 2005. That was 4 years ago and I never believed in my heart that I wouldn't be around to see my child grow up and have her own children. Sounds like he is receiving aggressive treatment for an aggressive cancer. I too had a agressive treatment. The fact that the turmor is shrinking means that the chemo is working. It does become a waiting game just to finally get a surgeon who will take a chance. I went out of state three times before they decided that I was a good enough candiate for a sucessfully surgery. My husband and I wouldn't take no for an answer even though every trip was heartbreaking. It took 11 months of Chemo before I could have the surgery. Then an additional three months of Chemo after the surgery. But it all was worth it to have my life given back to me even though it is a different life than the one I had. It is better. The Health Master is a great product. Fruits,vegtables, lean meats and fish are the way to go. The metal taste is from the Chemo and won't go away as long as you are receiving Chemo. I'm glad he and you are fighters because that is what you need to be to beat this monster. I love to hear that you have an oncologist that is working outside the box. You need to have a doctor right along side of you that once they know that you are willing to go to the edge, they will be right there with you. This disease will teach you patience and perserverence. Everyday becomes a blessing.
You and your husband are in my prayers.
Lily

God Bless YOU!
Lily50, thank you so very much for taking the time to write such a detailed reply. I hadn't told my husband that I was looking at discussion boards when I couldn't sleep, not knowing where to turn, but had to read him your post. He was very positive afterward and told me to go ahead and start mixing those darn organic veggies and fruits! He had been being a stinker about that...not much for trying new things. Wanted to stick to his hamburger and steaks too but have pretty much weaned him off that except for his spaghetti and garlic toast dinner that he has to have. We don't know where we're heading but as I stated before, we are fighters. With the not knowing, it is heart warming to read a reply like yours, to let us know that we are doing the best we can and to give us hope. My husband is in his 2nd round and another CT scan will be done in April - so if we hear more recession/tumor shrinkage - we will push and get other opinions on the gallbladder being removed as you did. After reading your reply for the umpteenth time, I know why you are a cancer survivor - to help others is so very apparent - as you have such a way with words and are so detailed that it makes one feel special. Thank you for your prayers - means so very much to us!! If you would like, visit our website and email using our contact page, if you don't mind me emailing you. Our website is: http://www.eaglecrestk9resort.com We own our own business so get to work together every day and play with dogs which is very therapeutic, especially for me as Mike sleeps a lot more than he used to, needs that daily nap or two. God Bless You Lily50

Lily50

Tracy R. said:

God Bless YOU!
Lily50, thank you so very much for taking the time to write such a detailed reply. I hadn't told my husband that I was looking at discussion boards when I couldn't sleep, not knowing where to turn, but had to read him your post. He was very positive afterward and told me to go ahead and start mixing those darn organic veggies and fruits! He had been being a stinker about that...not much for trying new things. Wanted to stick to his hamburger and steaks too but have pretty much weaned him off that except for his spaghetti and garlic toast dinner that he has to have. We don't know where we're heading but as I stated before, we are fighters. With the not knowing, it is heart warming to read a reply like yours, to let us know that we are doing the best we can and to give us hope. My husband is in his 2nd round and another CT scan will be done in April - so if we hear more recession/tumor shrinkage - we will push and get other opinions on the gallbladder being removed as you did. After reading your reply for the umpteenth time, I know why you are a cancer survivor - to help others is so very apparent - as you have such a way with words and are so detailed that it makes one feel special. Thank you for your prayers - means so very much to us!! If you would like, visit our website and email using our contact page, if you don't mind me emailing you. Our website is: http://www.eaglecrestk9resort.com We own our own business so get to work together every day and play with dogs which is very therapeutic, especially for me as Mike sleeps a lot more than he used to, needs that daily nap or two. God Bless You Lily50

Your Husband
Hi Tracy,

I know that when I was the patient my mind and body were in a continual fog. After the first month of reading all the depressing news I couldn't take anymore information and just wanted to get through it. It has been quite a life experience that I never wanted anyone else to have to go through. Now I feel if I can help in any way, answer questions or just be there to support others that it is also part of my healing process. Sometimes I feel that the caregiver has more stress than the patient as they are watching the one they love deal with this awful disease.
Your husband will find that the farther he gets into treatment that it will be easier to drink those fruits and vegtables instead of trying to force down whole foods. Red meat isn't really a good idea as it is hard to digest. He is a man after my own heart, I could eat pasta and garlic toast everday. My doctor told me to just eat whatever I wanted as long as a ate. During the course of my treatment I lost 35 lbs.
Hope and Faith are two very important things. Being able to fight and go the distance is very important. Some days you won't feel like fighting but each new day will bring new energies to you both. He sounds like he is almost on the same course that I was. I got CT scans every three months, up until now. I only have to have them every 6 months. I'm a frequent scanner at my radiology department. I actually had a Liver Transplant Surgeon at UCLA do my surgery. He pioneered the procedure for the type of surgery I had. They removed my gallbladder, part of my liver, part of my stomach, lymph nodes and more.
My dogs helped me through the tough times also. My red golden retriever never left my side. A year after my surgery my dog got cancer and didn't survive.
You are so lucky that you can spend time together whenever he feels good. That is so important. I slept alot too. The pain medication that I was on contributed to being so tired.
Well off to your website.
Take Care and you both are in my prayers.
Lily

Tracy R.

Lily50 said:

Your Husband
Hi Tracy,

I know that when I was the patient my mind and body were in a continual fog. After the first month of reading all the depressing news I couldn't take anymore information and just wanted to get through it. It has been quite a life experience that I never wanted anyone else to have to go through. Now I feel if I can help in any way, answer questions or just be there to support others that it is also part of my healing process. Sometimes I feel that the caregiver has more stress than the patient as they are watching the one they love deal with this awful disease.
Your husband will find that the farther he gets into treatment that it will be easier to drink those fruits and vegtables instead of trying to force down whole foods. Red meat isn't really a good idea as it is hard to digest. He is a man after my own heart, I could eat pasta and garlic toast everday. My doctor told me to just eat whatever I wanted as long as a ate. During the course of my treatment I lost 35 lbs.
Hope and Faith are two very important things. Being able to fight and go the distance is very important. Some days you won't feel like fighting but each new day will bring new energies to you both. He sounds like he is almost on the same course that I was. I got CT scans every three months, up until now. I only have to have them every 6 months. I'm a frequent scanner at my radiology department. I actually had a Liver Transplant Surgeon at UCLA do my surgery. He pioneered the procedure for the type of surgery I had. They removed my gallbladder, part of my liver, part of my stomach, lymph nodes and more.
My dogs helped me through the tough times also. My red golden retriever never left my side. A year after my surgery my dog got cancer and didn't survive.
You are so lucky that you can spend time together whenever he feels good. That is so important. I slept alot too. The pain medication that I was on contributed to being so tired.
Well off to your website.
Take Care and you both are in my prayers.
Lily

You Are Special
Lily, I sent an email and just came back onto this site...weird, but the thing that sticks out is the loss of your dog. What was his/her name? I was so sorry to hear that after all you had been through that you lost your devoted companion.
Yes, Hope & Faith - very, very important. When we first heard the news, after hearing the words -"not operable", "no cure", "a year at best" - I was so lost and scared. I was standing outside with a dog in a play yard and started praying,asking the Lord to help my husband and myself, to be strong for Mike. It was an overcast cloudy gray day - as all winter days are here in Minnesota, but a few minutes into my prayer and the clouds broke and the sun felt warm on my face. I thanked the Lord at that moment - because I felt peace for the first time. It was like he was letting me know that no matter what everything would be okay - that he was there. I still get emotional and feel lost at times but think of that moment and the feeling that filled me. The sun was not warm just on my face - the warmth actually filled my body. It was the strangest feeling and I had never had that before.
God is with us - we don't always remember that - but God is with you Lily and helped send you to us.

FriendoftheFamily

Treatment Option
Hello to all of you,

My wife was also diagnosed with stage 4 gall bladder cancer. It has spread in to her liver and possibly into her colon. It is also in the lyph node outside of the gall bladder. We got second and third opinions and was given a very grim prognosis and is not operable at this time.We are not ready to accept this ! She is only 47. Through this experience I have been learning every possible thing that I can do to help her. I have been keeping a journal every day of her treatment and also of her symtoms. What I have learned is that diet is a big part of keeping her pain low. I have put her on a special diet of every food that fights cancer. STAY AWAY FROM FATTY FOODS! Foods that are high in fat will cause pain. Fruits, vegetables, fish, lean meats, yogurt, and fiber are all good. Be careful with foods that cause gas. Prevacid and Gas X help to keep the pressure down. The gas pain seems to be her biggest complaint. She is recieving chemo that consists of GEMOX and Cisplatin. She is also taking another drug that is a protocol. If we find it to be something that works, I will share the data with the world. She has only had two sessions of chemo. Her chemo regiment is once per week for two weeks and then one week off. We will be monitoring the tumor marker in her blood work to see if it is showing signs of progress. After two months, she will have another PET scan done to see if the tumor has shrunk. Our hopes are to shrink the tumor down to get her to a point to where she is operable. She will then have the gallbladder removed along with part of her liver, the lymph node and possibly a partial colonoscopy. If any of you would like any further information, please feel free to contact me, and I will be happy to share.

Let's all be friends for the cure!

mttallo

FriendoftheFamily said:

Treatment Option
Hello to all of you,

My wife was also diagnosed with stage 4 gall bladder cancer. It has spread in to her liver and possibly into her colon. It is also in the lyph node outside of the gall bladder. We got second and third opinions and was given a very grim prognosis and is not operable at this time.We are not ready to accept this ! She is only 47. Through this experience I have been learning every possible thing that I can do to help her. I have been keeping a journal every day of her treatment and also of her symtoms. What I have learned is that diet is a big part of keeping her pain low. I have put her on a special diet of every food that fights cancer. STAY AWAY FROM FATTY FOODS! Foods that are high in fat will cause pain. Fruits, vegetables, fish, lean meats, yogurt, and fiber are all good. Be careful with foods that cause gas. Prevacid and Gas X help to keep the pressure down. The gas pain seems to be her biggest complaint. She is recieving chemo that consists of GEMOX and Cisplatin. She is also taking another drug that is a protocol. If we find it to be something that works, I will share the data with the world. She has only had two sessions of chemo. Her chemo regiment is once per week for two weeks and then one week off. We will be monitoring the tumor marker in her blood work to see if it is showing signs of progress. After two months, she will have another PET scan done to see if the tumor has shrunk. Our hopes are to shrink the tumor down to get her to a point to where she is operable. She will then have the gallbladder removed along with part of her liver, the lymph node and possibly a partial colonoscopy. If any of you would like any further information, please feel free to contact me, and I will be happy to share.

Let's all be friends for the cure!

Starting chemo today
I was diagnosed in the beginning of December with inoperable gallbladder cancer that has metastasized to my liver and bile ducts and was given "2-3 good months to live and 6-9 months total" even though I had no symptoms. At that point, I told the Dr I had to make it at least two more years to see my son graduate from college. I am still asymptomatic and will be starting chemo with Gemzar and Xeloda today with the hope of shrinking the tumors enough to become operable or at least extending my life to see him graduate.

Since I am 61 and can't afford to stop working since I am the soul support for my son and I, of course I am nervous about starting the chemo and it has been very helpful to read your posts of chemo helping.

FriendoftheFamily

mttallo said:

Starting chemo today
I was diagnosed in the beginning of December with inoperable gallbladder cancer that has metastasized to my liver and bile ducts and was given "2-3 good months to live and 6-9 months total" even though I had no symptoms. At that point, I told the Dr I had to make it at least two more years to see my son graduate from college. I am still asymptomatic and will be starting chemo with Gemzar and Xeloda today with the hope of shrinking the tumors enough to become operable or at least extending my life to see him graduate.

Since I am 61 and can't afford to stop working since I am the soul support for my son and I, of course I am nervous about starting the chemo and it has been very helpful to read your posts of chemo helping.

Do Not Give Up!
From what I have experienced so far, the doctors all seem to give worst case scenario. I think that they do this so that they don't get your hopes up. Have you had a 2nd opinion? 2 years in not enough to ask for. You are still young and you still have more life to live. Do not give up! Be positive. Change your diet. Do you have a good support group? Through my experience with dealing with my wife's cancer, I have decided that I would like to become an advocate for others also. Please feel free to contact me and I will share all that I have learned with you.
familyfriendadvocate@yahoo.com

Lily50

Tracy R. said:

You Are Special
Lily, I sent an email and just came back onto this site...weird, but the thing that sticks out is the loss of your dog. What was his/her name? I was so sorry to hear that after all you had been through that you lost your devoted companion.
Yes, Hope & Faith - very, very important. When we first heard the news, after hearing the words -"not operable", "no cure", "a year at best" - I was so lost and scared. I was standing outside with a dog in a play yard and started praying,asking the Lord to help my husband and myself, to be strong for Mike. It was an overcast cloudy gray day - as all winter days are here in Minnesota, but a few minutes into my prayer and the clouds broke and the sun felt warm on my face. I thanked the Lord at that moment - because I felt peace for the first time. It was like he was letting me know that no matter what everything would be okay - that he was there. I still get emotional and feel lost at times but think of that moment and the feeling that filled me. The sun was not warm just on my face - the warmth actually filled my body. It was the strangest feeling and I had never had that before.
God is with us - we don't always remember that - but God is with you Lily and helped send you to us.

All of us are special in our own ways
Tracy,
I went to Mike's website yesterday because I was thinking of you both. I can tell your family and friends are very supportive and with the help of God,family and friends you both will weather this storm. We are never given more than we can handle, but sometimes we are not aware of how strong we really are.
My dog's name was Dreamstarz, she was my constant companion and was the most gentle dog I had ever had. We had no idea how sick she was, but how she felt never changed the fact that she was always by my side, if she wasn't trying to get as close to me as she could. I miss her but I do have other dogs that have risen to the occassion once she was gone.
The feelings of being lost and scared are common when you are in crisis. If you didn't love the person that is going through this with all your heart, it wouldn't bother you, but it does.
The Lord can touch you when you need him the most. It is important to ask for help when you feel that you can no longer be strong. The sense of peace that he can give is one of the most powerful gifts that you can be given.
I have listed the name of my Oncologist under Oncologist with experience treating gallbladder cancer, maybe you could share the information with Mike's oncologist. Sometimes the oncologists do share information and sometimes not. I feel that it can't hurt to ask and if it could be helpful why not. Give it a shot if you would like. My doctor is the greatest and I have had others do that with some success.
Rest is the best thing for Mike after Chemo as it takes a toll on your body and mind. Enjoy the days you can and work within the limitations of other days that maybe not so good. The bad days will get better.
Take Care
Lily

Lily50

FriendoftheFamily said:

Treatment Option
Hello to all of you,

My wife was also diagnosed with stage 4 gall bladder cancer. It has spread in to her liver and possibly into her colon. It is also in the lyph node outside of the gall bladder. We got second and third opinions and was given a very grim prognosis and is not operable at this time.We are not ready to accept this ! She is only 47. Through this experience I have been learning every possible thing that I can do to help her. I have been keeping a journal every day of her treatment and also of her symtoms. What I have learned is that diet is a big part of keeping her pain low. I have put her on a special diet of every food that fights cancer. STAY AWAY FROM FATTY FOODS! Foods that are high in fat will cause pain. Fruits, vegetables, fish, lean meats, yogurt, and fiber are all good. Be careful with foods that cause gas. Prevacid and Gas X help to keep the pressure down. The gas pain seems to be her biggest complaint. She is recieving chemo that consists of GEMOX and Cisplatin. She is also taking another drug that is a protocol. If we find it to be something that works, I will share the data with the world. She has only had two sessions of chemo. Her chemo regiment is once per week for two weeks and then one week off. We will be monitoring the tumor marker in her blood work to see if it is showing signs of progress. After two months, she will have another PET scan done to see if the tumor has shrunk. Our hopes are to shrink the tumor down to get her to a point to where she is operable. She will then have the gallbladder removed along with part of her liver, the lymph node and possibly a partial colonoscopy. If any of you would like any further information, please feel free to contact me, and I will be happy to share.

Let's all be friends for the cure!

Friends
Hello,

I'm sorry to hear about your wife. The grim prognosis that it is not operable at this time doesn't say Never, Just not right now. My oncologist told me that the Chemotherpy is the Science and the Surgery is the Art. It is important to remember that if you have success in shrinking the turmor with Chemo that surgery can become a viable option for you down the road. Hope and Faith will keep you going. I was 47 when I was diagnosed and I can proudly say that I will be turning 51 this year. I'm a firm believer in writing things down as things happen so quickly that you can have days when you don't even remember what happened the day before. Your information that you are sharing is very helpful. This is a disease that seems to be coming to the forefront and any information that we can give each other that can help is well worth the time spent sharing this information. We need to be our own advocates for this disease.

Thanks for sharing!
Count me as one of the friends!
Lily

Lily50

mttallo said:

Starting chemo today
I was diagnosed in the beginning of December with inoperable gallbladder cancer that has metastasized to my liver and bile ducts and was given "2-3 good months to live and 6-9 months total" even though I had no symptoms. At that point, I told the Dr I had to make it at least two more years to see my son graduate from college. I am still asymptomatic and will be starting chemo with Gemzar and Xeloda today with the hope of shrinking the tumors enough to become operable or at least extending my life to see him graduate.

Since I am 61 and can't afford to stop working since I am the soul support for my son and I, of course I am nervous about starting the chemo and it has been very helpful to read your posts of chemo helping.

Today
Hope all went well today. I think that the first day of chemo can be one of the hardest days of your entire life. It is so stressful as there are so many unknowns at this time. The doctors will give you information based on statistics that can be old and outdated.

You sound like a fighter and this will be the most important fight of your life. I'm glad to hear that you have a goal to see your son graduate from college. I too had a goal of seeing my daughter graduate from high school and sending her away from home to college. I was not going to let any disease or doctor come between me and that goal. I'm now looking forward to her graduating from college in the next year and a half.

It will be hard to continue to work through this. This disease will take all of your energies to beat it, but I give you alot of credit for trying to do both.

I didn't work, but luckily I had STD and LTD benefit coverage and then was able to go on Social Security. Is that a possible option for you? I was 49 years old and on Social Security. Who knew that it was even possible

Take Care, your in my prayers.

Lily