Gallbladder Cancer - 2012 (Any Stage)

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Comments

  • westie66
    westie66 Member Posts: 642
    Libbyh said:

    Tumour markers
    Hi there Cheryl and everybody,
    I'm new on this web site and am so happy to have found it - you guys are such an inspiration. Talking about tumour markers, my oncologist said to me not to fully rely on them but they are still an indication that the treatment we are being given is working. My tumour markers went from 2290 in June this year when i was first diagnosed to 586 in September. To my Oncologist and me this is amazing and is what still gives me hope when a few months back I had none. To change the subject, I am on my 3rd cycle of chemo treatment - Cisplatin and Gemcitabine. Since I started back in August I have put on 6kgs in weight and eat like a horse. I also have been getting itchy fingers and palms and the soles of my feet, has anyone else had the same problems?
    Looking forward to a reply - be well everyone, Libby
    Ps, I did put my first discussion in a few weeks back ((I replied to Rocky) because I didn't know how to start my own discussion

    Itchy Fingers
    Hi: I didn't get any itchiness or tingling while on cisplatin and gemcitibine but have had it with oxaliplatin (another but stronger platinum chemical). Tell your oncologist about it and he/she may be able to reduce the amounts of cisplatin you are getting. Which tumour marker did you get?
    Cheryl
  • TJ2017
    TJ2017 Member Posts: 1
    Dad beginning his fight
    Lily,

    Thank you for telling your story! My dad had scans last week due to weight loss and a blood test that showed some liver issues. The scans came back with 5cm tumor in gallbladder, looks like spreading to liver, some tumars in lymph nodes, some tumors in lower lung, and small (which could be unrelated) mass in kidneys. He has never been sick, just complained of slight nausea and a little tired. We had a biopsy yesterday and all indications point to gallbladder cancer that has mestastasized. Our doctor has said he would surprised if it is anything else. So we are beginning the journey that so many of you have bravely been fighting. You all give me hope. My dad lives in south florida. I live in LA. We have a consult with my dad's doctor recommended oncologist next week and one I found at a cancer institute nearby that could be good. We are going to give both a chance, but the need for support and the success of Lily's procedures. LA may be a better place to start.

    Lily: Do you know of how I can find an oncologist in LA? Should I call Weber's office and ask for an oncologist referral? Would your Dr in nevada have a referral in LA? Not sure how to start? I looks like UCLA has the experience and part of me leans toward doing all this in LA if my dad agrees to it. Looking for some counsel. I actually called your nevado dr's office and since I am not a patient they couldn't offer any referral.

    Thank you for any help.

    Trevor
  • Libbyh
    Libbyh Member Posts: 6
    westie66 said:

    Itchy Fingers
    Hi: I didn't get any itchiness or tingling while on cisplatin and gemcitibine but have had it with oxaliplatin (another but stronger platinum chemical). Tell your oncologist about it and he/she may be able to reduce the amounts of cisplatin you are getting. Which tumour marker did you get?
    Cheryl

    Tumour markers
    Hi there Cheryl
    Thank you for your reply, it is nice to actually talk to some one else suffering with the same complaint. I don't know of any one in New Zealand who I can talk too. My tumour marker was the CA19-9, the other one they did was the CEA and that went from 13.8 in August to 7.7 in September.
    My story is just like all of ours. I was diagnosed in June this year with a tumour in my gallbladder the size of and orange which had spread to my liver and bile ducts. Of course I had all the usual doom and gloom from the doctors who say it is inoperable and who have given me the usual months to live. They don't know how strong some of us can be and you people here on this website are testimony to this, so thank you Cheryl, Lily and all you other wonderful survivors out there who give hope and help others like me with your positiveness and encouragement. I am only 55 years old and have too much to live for so I will be fighting hard....
    Much love
    Libby
  • lirok
    lirok Member Posts: 49
    Jean160 said:

    Good News; Whoo hoo Rocky!
    That is great news to hear. Not only did you get away for R & R, but you return home with fantastic news. Enjoy not having chemo! I hope your energy builds back up soon so you can enjoy the summer and visualize any cancer cells shriveling up to nothing! I am so happy for you. Jean

    Liver Complications
    Hi everyone. Hope all are well. Just a brief update on my situation. I got back from vacation the first week of August and my bilirubin count was up to 9.7. Normal is UNDER 1. They assumed my bile ducts were blocked. As you may or may not know, when I underwent surgery in Feb of 2011, they removed my gallbladder plus a good portion of my liver including the bile ducts and the common bile duct. The surgeon "created new bile ducts" from my large intestine and placed metal stents inside. For over a year we were good. Then in July while in Fla, I showed signs of jaundice. I got back in April and they assumed the bile ducts were blocked but a CT scan showed they were clear. They gave me an external biliary drain and in a week my number dropped to 4. Now on Friday my blood test showed it went back up to 6.1. I have no infection, my bile ducts are clear and I have a biliary drain in place. They are totally puzzled. I had another catheter placed in today that is much larger. The IR doc told me there is a shot I may have to wear this drain from now on. Not the worst thing but a pain in the butt. Thats where we are now. I am still off of chemo and my markers remain low. The cells seem to be at bay. Anyway, I hope all are well and please, stay positive. BTW, if anyone needs to e-mail me for anything please feel free. sweeneyrocky@gmail.com.

    Fight the fight in your mind first, THEN attack the cancer. You can do it.


    Rocky
  • Jean160
    Jean160 Member Posts: 27
    TJ2017 said:

    Dad beginning his fight
    Lily,

    Thank you for telling your story! My dad had scans last week due to weight loss and a blood test that showed some liver issues. The scans came back with 5cm tumor in gallbladder, looks like spreading to liver, some tumars in lymph nodes, some tumors in lower lung, and small (which could be unrelated) mass in kidneys. He has never been sick, just complained of slight nausea and a little tired. We had a biopsy yesterday and all indications point to gallbladder cancer that has mestastasized. Our doctor has said he would surprised if it is anything else. So we are beginning the journey that so many of you have bravely been fighting. You all give me hope. My dad lives in south florida. I live in LA. We have a consult with my dad's doctor recommended oncologist next week and one I found at a cancer institute nearby that could be good. We are going to give both a chance, but the need for support and the success of Lily's procedures. LA may be a better place to start.

    Lily: Do you know of how I can find an oncologist in LA? Should I call Weber's office and ask for an oncologist referral? Would your Dr in nevada have a referral in LA? Not sure how to start? I looks like UCLA has the experience and part of me leans toward doing all this in LA if my dad agrees to it. Looking for some counsel. I actually called your nevado dr's office and since I am not a patient they couldn't offer any referral.

    Thank you for any help.

    Trevor

    GB cancer
    Hello to everyone. Cheryl, I hope you are up and feeling better. To Susan, I imagine you are still going through chemo, and I hope things are going well: I know chemo can kick you back a bit (haven’t heard from you in a while).

    To TJ2017 and tracier: looking for good care centers . I really believe there are a lot of good facilities for gallbladder cancer. Not sure if there is one perfect place; but I would look for a doctor with some experience in the area: this is rare enough that most docs do not have personal experience with gallbladder cancer; but if at least one or two providers on you team have experience, it really helps. I know Slone Kettering and MD Anderson, among others do a lot of biliary surgery training: but the people they train of course are all over and have settled everywhere. I know when we were trying to decide where to go for surgery (I saw 3 different surgeons before I decided on one that I felt the best about); my husband and I looked at their bios to see where they trained and what kind of experience they had. I would also choose to go to a facility where they do more of these surgeries (usually a bigger medical center). Of course I was also looking for one with positive attitude as well. ☺. We thought of going out of state; but for us, to follow up closer to home sounded good (all things being equal). I stayed within my state (WA), but my surgeon trained at Slone Kettering. Although 2011 was not a fun year for me, I feel I received good treatment. So far, so good. I was only 56 when diagnosed: the shock of my life.

    What I am curious about is: what was the circumstance surrounding the gallbladder cancers? I had a polyp in my gallbladder. Were most others a polyp? Gallstones? Porcelain gallbladder? Infection? Take care, everyone. Keep fighting........
    Jean
  • westie66
    westie66 Member Posts: 642
    Jean160 said:

    GB cancer
    Hello to everyone. Cheryl, I hope you are up and feeling better. To Susan, I imagine you are still going through chemo, and I hope things are going well: I know chemo can kick you back a bit (haven’t heard from you in a while).

    To TJ2017 and tracier: looking for good care centers . I really believe there are a lot of good facilities for gallbladder cancer. Not sure if there is one perfect place; but I would look for a doctor with some experience in the area: this is rare enough that most docs do not have personal experience with gallbladder cancer; but if at least one or two providers on you team have experience, it really helps. I know Slone Kettering and MD Anderson, among others do a lot of biliary surgery training: but the people they train of course are all over and have settled everywhere. I know when we were trying to decide where to go for surgery (I saw 3 different surgeons before I decided on one that I felt the best about); my husband and I looked at their bios to see where they trained and what kind of experience they had. I would also choose to go to a facility where they do more of these surgeries (usually a bigger medical center). Of course I was also looking for one with positive attitude as well. ☺. We thought of going out of state; but for us, to follow up closer to home sounded good (all things being equal). I stayed within my state (WA), but my surgeon trained at Slone Kettering. Although 2011 was not a fun year for me, I feel I received good treatment. So far, so good. I was only 56 when diagnosed: the shock of my life.

    What I am curious about is: what was the circumstance surrounding the gallbladder cancers? I had a polyp in my gallbladder. Were most others a polyp? Gallstones? Porcelain gallbladder? Infection? Take care, everyone. Keep fighting........
    Jean

    Gallbladder Cancer
    Hi Jean: A good question. I was told mine was likely a result of irritation from the many gallstobes I had in my gallbladder over a long period of time. It was recommended I get my gallbladder removed years and years ago because it was full of gallstones but, nope, I was too busy to take time off. Apparently it is most common in women in the highlands of the Andes - go figure! I know that gallstones are more common in women than men, women in their 50s or older, and in locations where hard water is common.
    Cheryl
  • Nacree
    Nacree Member Posts: 1
    Mom gbc

    Hi everyone. I'm new at posting to the discussion board but not new to the site. I've been reading everyone's comments here and there since Mother's Day which was the day my mom was diagnosed with gbc. Everytime I felt like I was losing hope, I immediately come to this site. I look for stories that would inspire me and give me hope. I look for posts where individuals are facing the same difficulties as my mom.
    Right now, I feel so hopeless and have finally decided to post a comment. My mom was admitted to hospital this past Friday bc she was having symptoms of jaundice. After the ct scans, the drs found blockage in the bile duct. They are pretty sure it's a tumor. The cancer has spread to her liver. She had her gall bladder removed in may. The gi specialist didn't seem optimistic at all. If anything, he destroyed any hope I had. He will be performs ekcp today to insert stent in bile duct. I asked if he's 100% sure it's cancer bc there was no biopsy done but he said he's positive it is. I want to have hope to help my mom keep fighting his fight. But how can I when the drs and specialist tells me lot to. My mom also has tumor in her lymph node located in her neck. She had radiation but I haven't noticed much shrinkage. Please anyone.... Anyone who has had similar symptoms as my mom, give me any advice, any words of encouragement to help me stay positive. When I look at my mom, I feel guilty for feeling hopeless. She needs me to be strong and I am truly trying.
  • hillaryjoRN
    hillaryjoRN Member Posts: 32
    Nacree said:

    Mom gbc

    Hi everyone. I'm new at posting to the discussion board but not new to the site. I've been reading everyone's comments here and there since Mother's Day which was the day my mom was diagnosed with gbc. Everytime I felt like I was losing hope, I immediately come to this site. I look for stories that would inspire me and give me hope. I look for posts where individuals are facing the same difficulties as my mom.
    Right now, I feel so hopeless and have finally decided to post a comment. My mom was admitted to hospital this past Friday bc she was having symptoms of jaundice. After the ct scans, the drs found blockage in the bile duct. They are pretty sure it's a tumor. The cancer has spread to her liver. She had her gall bladder removed in may. The gi specialist didn't seem optimistic at all. If anything, he destroyed any hope I had. He will be performs ekcp today to insert stent in bile duct. I asked if he's 100% sure it's cancer bc there was no biopsy done but he said he's positive it is. I want to have hope to help my mom keep fighting his fight. But how can I when the drs and specialist tells me lot to. My mom also has tumor in her lymph node located in her neck. She had radiation but I haven't noticed much shrinkage. Please anyone.... Anyone who has had similar symptoms as my mom, give me any advice, any words of encouragement to help me stay positive. When I look at my mom, I feel guilty for feeling hopeless. She needs me to be strong and I am truly trying.

    Hello everyone!
    My mom only

    Hello everyone!
    My mom only has two more chemo treatments left and then we are done! and God willing done forever! We have a follow up scan post treatment in december.. then the oncologist recommends a CT every 6 months and blood work (liver enzymes) every 3 months. Hope everyone is doing well! God bless Hillary
  • My 44 year old husband diagnosed and heading for treatment
    Dear Lily and all:
    Before I reached this website I was a lost wife of a loving husband who was just diagnosed with a Stage4 Cholangiocarcinoma that took over the Liver and lungs from the biliary ducts (I.e. inoperable). A cousin sent me the link here: my Gosh, there's so much more hope than doctors ever like to portray. They gave us a few months with Chemo, and said we need a re-diagnosis before starting that since the PETs, CTs, MRIs and all that other stuff we did may not be fully sufficient to get the proper treatment right.
    We're heading to France tomorrow, originally we're from Egypt, and will hopefully start treatment as soon as they confirm the diagnosis 100%
    The first UK doctor who saw the files said we should just stick home and not let him suffer through Chemo since we're only talking about a few months. My husband himself is talking about it like its a cold and will go away. In between the bad news I receive and his optimistic outlook on his sickness I'm a desperate wife who's looking all over the world for one glimpse of light.
    I'm so glad I found you and all the others on this discussion and I wish you all the good recovery you're hoping for and deserve with the hope you're spreading here.
    Thank you
  • My 44 year old husband diagnosed and heading for treatment
    Dear Lily and all:
    Before I reached this website I was a lost wife of a loving husband who was just diagnosed with a Stage4 Cholangiocarcinoma that took over the Liver and lungs from the biliary ducts (I.e. inoperable). A cousin sent me the link here: my Gosh, there's so much more hope than doctors ever like to portray. They gave us a few months with Chemo, and said we need a re-diagnosis before starting that since the PETs, CTs, MRIs and all that other stuff we did may not be fully sufficient to get the proper treatment right.
    We're heading to France tomorrow, originally we're from Egypt, and will hopefully start treatment as soon as they confirm the diagnosis 100%
    The first UK doctor who saw the files said we should just stick home and not let him suffer through Chemo since we're only talking about a few months. My husband himself is talking about it like its a cold and will go away. In between the bad news I receive and his optimistic outlook on his sickness I'm a desperate wife who's looking all over the world for one glimpse of light.
    I'm so glad I found you and all the others on this discussion and I wish you all the good recovery you're hoping for and deserve with the hope you're spreading here.
    Thank you

    First round of Chemo coming up
    Finally after searching the world for answers, we receive exactly what you have all heard: chemo with Gemzar and Eloxatine - 6 months initially but likely to extend to one year.
    My beloved husband is having a difficult time coping. The difficulty is that we were just about thinking of having children, and with the conditions currently at hand, we're not even able to collect his semen for the future. This is adding to the stress of the whole situation.
    He was very strong thus far, but seems that the delay in start of treatment (maybe another few days) is making him nervous and difficult. He keeps losing important papers and refuses to let me handle that.

    I wonder now how things will develop once we start treatment! Will it get better or worse?
  • Hope5
    Hope5 Member Posts: 2

    First round of Chemo coming up
    Finally after searching the world for answers, we receive exactly what you have all heard: chemo with Gemzar and Eloxatine - 6 months initially but likely to extend to one year.
    My beloved husband is having a difficult time coping. The difficulty is that we were just about thinking of having children, and with the conditions currently at hand, we're not even able to collect his semen for the future. This is adding to the stress of the whole situation.
    He was very strong thus far, but seems that the delay in start of treatment (maybe another few days) is making him nervous and difficult. He keeps losing important papers and refuses to let me handle that.

    I wonder now how things will develop once we start treatment! Will it get better or worse?

    Choosing from treatment options
    We are in the process of choosing a chemo treatment for my mother who was recently diagnos ed with stage 4a gallbladder cancer and 2 different teaching hospitals have suggested different combinations of chemo and a clinical. She is so confused to how to choose what is right. I cannot do it either for her, how do you know what to go with?

    I hope as I do for all that things get better and better as the time goes on.
  • KICKSTART
    KICKSTART Member Posts: 1
    Meg2003 said:

    Update on my dad
    We finally got him into Cancer Treatment Centers of America, and we love it! He's stage 4 and they are scheduling surgery. There were no battles with the doctor, they just said,"Let's do it."

    The procedure is called Hipec, I guess it's new and only 4 doctors in the country know how to do this. They will be removing his gallbladder, as much of the liver as possible, and any other tumors they see and then feed chemo directly to the area while he is open. Has anyone had this done?

    We are very hopeful and supposedly they have had great results with this procedure. I'll keep you posted!

    Help.
    Hello Meg,
    I just found this site and this is my first post. My 31 year old son was diagnosed with 80% gall bladder cancer 10% cholongio and 10% unknown. He has extensive tumors in his liver and I have had three surgeons say absolutely no to surgery. He has gone through two rounds of cesplatin and GEMZAR. We are also at the CTCA in Goodyear, AZ. My son arrived in a wheel chair 6/1/2012 and is walking driving enjoying his life now. Except for the fatigue you wouldn't know he was ill.

    What Oncologist is your family seeing and which CTCA are you at? I'm asking because we do not feel our Onc is "out of the box" thinking enough. We do love CTCA though.

    I hope everything turns out great for your family.
    Lori
  • Lily50
    Lily50 Member Posts: 209
    Hope5 said:

    Choosing from treatment options
    We are in the process of choosing a chemo treatment for my mother who was recently diagnos ed with stage 4a gallbladder cancer and 2 different teaching hospitals have suggested different combinations of chemo and a clinical. She is so confused to how to choose what is right. I cannot do it either for her, how do you know what to go with?

    I hope as I do for all that things get better and better as the time goes on.

    Treatment Options
    Hello

    I'm so sorry that this disease has come into your mother and your lives. Choices are very difficult to make when you are in the midst of the storm. Since you have stated that you are dealing with two different teaching hospitals that is why there are two differnt options being suggested based on their protocols.

    I think to come to a decision you need to first evaluate the doctors that will be going hand and hand with your mom on this journey. Which hospital has had more experience GBC patients? What were the successes with these patients? Is your mom more comfortable with one or the other? Are the hospitals in close proximty to where she lives? Is there any differences in the insurance (in-network or out-of-network) costs? It is terrible to have to deal with the financial side of things but it has to be a consideration as we all know that cancer treatment is expensive. Clinical trials are a good thing when the options may be limited.

    It is hard to know which one will be right for her but making the best decision based on what information you have is usually the best choice.

    It is a difficult journey with many ups and downs but it can be made to be at the least manageable.

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209

    My 44 year old husband diagnosed and heading for treatment
    Dear Lily and all:
    Before I reached this website I was a lost wife of a loving husband who was just diagnosed with a Stage4 Cholangiocarcinoma that took over the Liver and lungs from the biliary ducts (I.e. inoperable). A cousin sent me the link here: my Gosh, there's so much more hope than doctors ever like to portray. They gave us a few months with Chemo, and said we need a re-diagnosis before starting that since the PETs, CTs, MRIs and all that other stuff we did may not be fully sufficient to get the proper treatment right.
    We're heading to France tomorrow, originally we're from Egypt, and will hopefully start treatment as soon as they confirm the diagnosis 100%
    The first UK doctor who saw the files said we should just stick home and not let him suffer through Chemo since we're only talking about a few months. My husband himself is talking about it like its a cold and will go away. In between the bad news I receive and his optimistic outlook on his sickness I'm a desperate wife who's looking all over the world for one glimpse of light.
    I'm so glad I found you and all the others on this discussion and I wish you all the good recovery you're hoping for and deserve with the hope you're spreading here.
    Thank you

    Shamsrecovering Young husband diagnosed
    Hi,

    I'm so glad that you found us! Your husband is even younger than I was at time of diagnosis (I was 46 Stage 4 - inoperable). His age can work to his advantage. Hopefully he doesn't have any other medical issues and he was relatively healthy before this diagnosis. With treatment the winds of change can blow your way and maybe he will become operable like I did. I think most doctors don't even know that there are some survivors out there in this big old world. But everyone who visits this site and reads or posts knows that we do exist and we are here to spread Hope & Faith. This re-assessment is an ongoing thing that has to be done to see if the chemo cocktail of choice is doing what it needs to do. I was on the every three months re-assessment schedule for a very long time. Five years of every 3 months assessments, 1 year of every 6 month assessments and finally in year 7 once a year assessment as far as scans are concerned. I still see my oncologist every three months but that is because he has a vested interest in my success and if anything should come up he wants to be on top of it. Better to be overly cautious I say.

    I too was told to get my affairs in order as the survival rate for this disease isn't good. Well they were all wrong and those survival rates need updating. I had to laugh a little when you said your husband is talking about it like it’s a cold, I did the same thing. Denial was my friend and ignoring the issues worked for me as well. No one wants to face something like this especially if they have always been in control and made everything happen the way that they wanted to so far in this life. Sounds like he is also stubborn and he isn't going to give in easily and fight it all the way. Good for him!

    Sometimes I think it is harder to be the caregiver than the patient as the caregiver has to watch someone that they love go through this. But you will be his advocate throughout this journey to help him when the going gets rough, and it sometimes can get real rough.

    Talk to us whenever you need help, or even to vent your frustration, we are all here for you.
    Let us know how it is going.

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209

    First round of Chemo coming up
    Finally after searching the world for answers, we receive exactly what you have all heard: chemo with Gemzar and Eloxatine - 6 months initially but likely to extend to one year.
    My beloved husband is having a difficult time coping. The difficulty is that we were just about thinking of having children, and with the conditions currently at hand, we're not even able to collect his semen for the future. This is adding to the stress of the whole situation.
    He was very strong thus far, but seems that the delay in start of treatment (maybe another few days) is making him nervous and difficult. He keeps losing important papers and refuses to let me handle that.

    I wonder now how things will develop once we start treatment! Will it get better or worse?

    Shamsrecovering First Round of Chemo coming up
    Hi again,

    I'm putting the title in the subject line because this board seems to be posting at the end today. That's what usually happens this time of year when the discussion thread is too large.

    I'm sorry your husband is under such stress. I found that if I broke down my disease into more manageable pieces then it was easier to cope. I created milestones to achieve during the process. He is probably upset that you both had made the decision to have children and then that decision was taken away from him. So much of his life is in such turmoil that it can be really hard to handle. Maybe you could discuss milestones that you could strive for, such as after successful treatment then re-visiting the possibility of having children.

    The delay is bothering him because he wants to get started with this and every day to him is precious. He doesn't want to give up his control and it is very frustrating to him that everything that he has taken care of now he won't be able to. You should talk to him and tell him that you are a team and you need to help each other get through this. You might not do things exactly the way that he would but it will get done. He needs to concentrate on just getting better. There will come a time for him that he will surrender and let you do things but he isn't quite there yet.
    There will be good days and bad days, but as a team you will get through it.

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209

    Hello everyone!
    My mom only

    Hello everyone!
    My mom only has two more chemo treatments left and then we are done! and God willing done forever! We have a follow up scan post treatment in december.. then the oncologist recommends a CT every 6 months and blood work (liver enzymes) every 3 months. Hope everyone is doing well! God bless Hillary

    Mom's last two chemo treatments
    Hi Hillary,

    You and your mom are in the count down now. Congrats! Let us know the results of the scan in December. Watch out for the dreaded scan anxiety. Follow-up of CT scans and blood work are the norm. I still have blood work every three months after 7 years of surviving.

    Every day is a blessing.

    Take Care
    Lily
  • ScotterR
    ScotterR Member Posts: 1
    Lily50 said:

    Shamsrecovering Young husband diagnosed
    Hi,

    I'm so glad that you found us! Your husband is even younger than I was at time of diagnosis (I was 46 Stage 4 - inoperable). His age can work to his advantage. Hopefully he doesn't have any other medical issues and he was relatively healthy before this diagnosis. With treatment the winds of change can blow your way and maybe he will become operable like I did. I think most doctors don't even know that there are some survivors out there in this big old world. But everyone who visits this site and reads or posts knows that we do exist and we are here to spread Hope & Faith. This re-assessment is an ongoing thing that has to be done to see if the chemo cocktail of choice is doing what it needs to do. I was on the every three months re-assessment schedule for a very long time. Five years of every 3 months assessments, 1 year of every 6 month assessments and finally in year 7 once a year assessment as far as scans are concerned. I still see my oncologist every three months but that is because he has a vested interest in my success and if anything should come up he wants to be on top of it. Better to be overly cautious I say.

    I too was told to get my affairs in order as the survival rate for this disease isn't good. Well they were all wrong and those survival rates need updating. I had to laugh a little when you said your husband is talking about it like it’s a cold, I did the same thing. Denial was my friend and ignoring the issues worked for me as well. No one wants to face something like this especially if they have always been in control and made everything happen the way that they wanted to so far in this life. Sounds like he is also stubborn and he isn't going to give in easily and fight it all the way. Good for him!

    Sometimes I think it is harder to be the caregiver than the patient as the caregiver has to watch someone that they love go through this. But you will be his advocate throughout this journey to help him when the going gets rough, and it sometimes can get real rough.

    Talk to us whenever you need help, or even to vent your frustration, we are all here for you.
    Let us know how it is going.

    Take Care
    Lily

    Dad's stent question
    My Dad unfortunately was diagnosed in June with gallbladder cancer. Surgery is not an option as the cancer has metastisiced (spelling?). By the way, we are in Canada and that may make a difference in treatment procedures. Oncologists do not seem to provide much detail but perhaps my parents are not being probing enough. Met with Dr Hart at St Joseph's in Toronto back in July. After second MRI, DR Hart determined surgery would not be "beneficial". This prognosis took a few months. By the time my Dad was subscribed to the regular chemo regime it was late September. My Dad had a platic stent put in his bile duct to drain his liver in July. Within a month or so he had to have it replaced. Now it is time to replace the stent again. The DRs are debating whether it should be another platic stent or a metal stent. The plastic stent can be replaced numerous times. The metal stent once in place cannot be replaced. The platic is thinner in diameter. The metal is thicker in diameter and can be cleaned out but is shorter which means the cancer can grow around and block the stent. Has anyone had experience with this situation and decision. What are the pros and cons of a platic versus metal stent
  • dawnfoiles
    dawnfoiles Member Posts: 1

    GallBladder Stage 4..
    My mom has been sick for a couple of months now. Rapid weight lost, appetite loss, and on & off severe stomach and back pain. She had already seen her Dr. and a GI specialist which then scheduled an appointment for her in two weeks for a colonoscopy and endoscopy. Within a couple of days, we had to take her to LAC-USC county hospital's emergency room. The doctors noticed her heart rate was irregular, incredible high and focused on this other than her pain. She was admitted that night for observation and was diagnosed having as A-Fib ( affibrillation) and acid reflux.

    Her appointment with her GI went well. He stated The images for her colonoscopy showed no abnormalities, just a little inflamed; no cancer. Because the results didn't explain her symptoms he referred her to a cardiologist (for the A- Fib) and a endocrinologist because of her results of her blood works.

    When she went to the endocrinologist, he said her thyroid was normal. But her liver test was high. And her cardiologist mentioned she did not have an A-Fib, but has occasional arrhythmia. Since both specialists were unable to diagnosis her GI doctor made an appointment to get a CT Scan within 2 weeks.

    She didn't even reach one week where on July 4 we had to take her to the ER at Huntington Memorial Pasadena. They did an ultrasound in her abdominal area and concluded that her Gall Bladder had to be removed. They admitted her and did another ultrasound. Early that morning a surgeon entered the room and announced they found masses (tumors) in her liver and suggested that they be removed. My mother did another ultrasound and CT to locate the tumors.

    The surgeon came in the next morning that they detected the masses in several areas in her body and was not able to operate. They wanted a biopsy to determine if it is cancer. They confirmed that she had gallbladder cancer. It had spread throughout her lymph nodes in her back and neck and stomach outer lining. Surgery was not an option.

    The first oncologist had given her 3 months without chemo and 6 months with chemo. This Thursday is going to be her first chemo treatment (Gemzar & Cisiplatin). We got a 2nd option and choose him to treat our mother since he was more experienced, and compassionate. We felt he expressed more concerned and effort in treating our mother.
    Although because it was stage 4 and that Gallbladder is such a rare cancer, the outcome of it all remained the same. But will try to make ordeal less painstaking.

    My mom is a beautiful 57 year old woman who was very strong and maintained her health. She always took good care of herself. In her lifetime she has never gotten seriously ill. For this to be called cancer it was a shocker all to us.

    If anyone out there has been diagnosed with this same cancer, please respond with your experiences & thoughts. My family wants to be aware of what we may encounter. Any suggestions, tips or any kind of help will be very much appreciated. You can also e-mail me @ evelynchan2004@yahoo.com or my sister @ casia2468@aol.com. Thank you

    My husband

    My husband Steve was diagnosed on Labor Day of this year. We were all in shcck since he is so healthy and YOUNG 48 years old. Who is your doctor and how did you find success? The Gemzar and Cisplatin did damage on his hearing so they changed chemo...then THAT didn't work and the tumors got bigger. Now he is on Oxaliplatin and Xeloda. We are running out of options...any advice?

  • Monarch64
    Monarch64 Member Posts: 22
    Rocky...how are you?

    Hey Rocky,

    Haven't heard from you for a bit but certainly think about you and pray for you and your family daily.  How are you?  Hope that is all is going well.

    Mom asks about you all the time.  She is doing excellent!  We have been so very, very blessed.

    Best wishes for all!

    Charmi

  • hillaryjoRN
    hillaryjoRN Member Posts: 32
    Monarch64 said:

    Rocky...how are you?

    Hey Rocky,

    Haven't heard from you for a bit but certainly think about you and pray for you and your family daily.  How are you?  Hope that is all is going well.

    Mom asks about you all the time.  She is doing excellent!  We have been so very, very blessed.

    Best wishes for all!

    Charmi

    :)

    Just wanted to let everyone know that my mom's CT scan in December was NORMAL:) :)!!!  March will mark her one year anniv. since the diagnosis. She is doing great...and we expect to continue to recieve good news!         hugs to everyone!     Hillary