Gallbladder Cancer Stage 4

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  • Lily50
    Lily50 Member Posts: 209
    Linda1949 said:

    Gallbladder Cancer
    Dearest Lily,

    Thanks or all your help. I'm finally up to responding myself. I know that my sister Kathleen has shared with you my health status. The diarhea is better now. Still have to be very careful what I eat. You sure can't count on the hopital. They said to just go home and eat a normal diet. Wrong! I have met with the radiologist and it seems that treatments are recommended along with chemo. I will meet with the oncologist again next week to discuss. I also have a 2nd opinion with another oncologist at the same HMO that has actually treated GBC as the other ocologist I saw has never treated it. They claim that it doesn't make a difference if the Dr. has treated it before or not as they just prescribe according to established protocol. They are all very gloom and doom so thank God for you and others on this blog with encouraging news. I am so fortunate to have great family support. I was never alone in the hospital. My sister Kathleen even leaned over the top of my bed during an earthquake to shelter me! My incision is healing great and I'm ready to move on to the next step (radiation and chemo) and get over it. I'm doing what I can to eat well and walk to make myself as healthy as I can before starting additional treatment. You are the only bright light in all this mess so thank you so much for being there for us.

    Linda1949

    Linds's Chemo and Radiation Journey
    Hi Linda,

    So glad to hear from you! Thank Kathleen for me for keeping us updated on your progress. She sounds like a great sister, and you are lucky to have her. That is a true statement when you say you have to be careful what you eat. As you get farther into chemo and radiation you become more and more cautious with everything you do. Your goal is to recover from this terrible disease and go on with your life. It may not be the same life you had before but it some ways it can become a better life for you. Stress and negativity will no longer have a place in your life. You will no longer have time for it. I think that the treatment plan protocols have both radiation and chemo lumped together. But I think that it depends on the person's circumstances. Some people have both before surgery or after surgery and others not at all. I think it depends on the stage of the cancer also. If you like the second oncologist better than the first one than I would choose him. I would feel that it is better to deal with someone who has experience with treating gallbladder chancer. But again that is just my opinion, and you need to make your own decision regarding what is best for you. I think all the doom and gloom that the doctor's project is just based on what they have read. It is hard to be positive about something that they haven't seen much success with. But that is just because they haven't met all of us. We are quite a positive group here.

    It is wonderful that you are taking the time to look after yourself. But be mindful that you just had major surgery and your body needs time to heal and rest a little bit. Don't forget to work on your mental attitude also. That is very important. I'm not saying that you won't have blue days, but just remember that you have every right to feel a little down but the next day will be better and remember that we are here for you.

    Take Care
    Lily
  • JanetMacK
    JanetMacK Member Posts: 3
    Lily50 said:

    Gallbladder Cancer Stage 4
    Hi,
    I too was diagnosed with gallbladder cancer stage 4 in the fall of 2005. My husband later told me that I was given a short time frame also. Well they were wrong!

    I had aggressive chemotherpy for almost a year to shink my turmor so that they could operate on my gallbladder, liver, stomach and removal of lymph nodes. I have a great oncologist in Las Vegas, Nevada and had my surgery at UCLA in California. I completed my chemo in March 2007.

    I never lost my HOPE or FAITH and no doctor should ever be allowed to take away your HOPE.

    If I can help answer any questions just let me know. It is a hard road but it is worth it. Every day becomes a blessing.

    GBC Stage IV
    I love your story. If I could figure out how to print it I'd paste it on my mirror.
    I got diagnosed in February. Dreary. But the chemo is working now and we'll see if there's more to be done.
  • JanetMacK said:

    GBC Stage IV
    I love your story. If I could figure out how to print it I'd paste it on my mirror.
    I got diagnosed in February. Dreary. But the chemo is working now and we'll see if there's more to be done.

    This comment has been removed by the Moderator
  • Lily50
    Lily50 Member Posts: 209
    JanetMacK said:

    GBC Stage IV
    I love your story. If I could figure out how to print it I'd paste it on my mirror.
    I got diagnosed in February. Dreary. But the chemo is working now and we'll see if there's more to be done.

    Janet's GBC Stage IV
    Hi Janet,

    Welcome to this discussion board! There are some really great people that you can talk to here. I am a survivor of this terrible disease, and you can be too. I was diagnosed in 2005,had chemo treatment 2005/2006, surgery 2006, chemo 2007 and I can proudly say I am in remission. This is a disease that is coming to the forefront. I know that when I was diagnosed I was told there were no other cases out there. There were but the doctor's didn't know about us. What chemo cocktail are you being given, and how many sessions? Have you had any surgery yet or radiation? Tell us what is going on and we can try to help you. Where are you located? It is wonderful when you can talk with someone who is in your area if possible. You are not in this alone, talk to us.

    Take Care
    Lily
  • DeeMatt
    DeeMatt Member Posts: 1

    Gallbladder Cancer
    Hi, Lily,

    Thank you so much for offering your words of hope. I have stage IV metastatic gallbladder cancer. I am only 64, and lost my husband to cancer less than 8 months ago. After removing my gallbladder and discovering the cancer, I had an exploratory surgery where they tried to resent the liver and remove the tumors. They were not able to do so, since the cancer had metastitized.

    My oncologist wants to use weekly Gemzar to try to shrink the tumors. May I ask what your chemo was?

    Jan

    Brother it stage Four Gall Bladder Cancer
    My brother has stage four Gall Bladder Cancer and the oncologist who just informed us of this last Friday July 30, 2010, we are still in shock over this. He has had one hard time of it with two lesions on the liver. He will be getting Gemzar as well with two weeks on and then one week off. His Doctor said that at the end of 90 days they will do a MRI or PET scan to see if the tumors have shrunk at which time the surgeon who did the laprascopy will operate to remove the gall bladder and re-section the liver, the othe possibility will be the new cyber knife radiation with only three to five treatments, he has been suffering with blood clots in the lungs as well as the right leg. He also had a stint put in the bile duct which was filled with stones, his jaundice is about gone, He is now in rehab trying to get stronger for the Chemo! He also had to have a filter put in his abdomen for the blood clots.
    He started out with a dry hacking cough in March which probably was lung blood clots, nothing was found until July, he has lost 35 pounds and had no appetite. His Doctor gave him antibiotics and cough meds, not looking any further into his problems. He also is getting over a bad blood infection.
    On the bright side, if there is one,he has come thru all of this, and regardless of the outlook I believe he is going to make it, where there is life there is Hope. He is one of the most wonderful people you could ever meet.
    If anyone needs a great surgeon dealing with the liver her name is Dr. Ellen Hegopian and she is at Jersey Shore University Medical Center, she found my brothers problem in less then 48 hours after being admitted. I just wish we had had her in March or April when he may of been stage three ....
    Good Luck with Genzar and keep in Touch.
  • Linda1949
    Linda1949 Member Posts: 13
    westie66 said:

    Gallbladder Cancer New
    Hi Linda: We can correspond during chemo and compare! I will be on gemcitibine and cisplantin, like Lily was. Her treatment was more aggressive than I'll be getting - mine is 6 cycles, a total of 12 treatments. Day 1 will be the two drugs together over about 5-8 hours, Day 2 will be 7 days later and only the gemcitibine over 1 hour. Then 3 weeks "vacation". Then Cycle 2 same as 1. So about 8 months. This is the standard treatment for Gallbladder Cancer in Canada as far as I know. There was a clinical trial done in Toronto this year that compared treatments using cisplantin with either gemcitibine or with capecitabine and the gemcitibine combo worked better so they discontinued the trial. The gem/cis combo was also recommended by the Harvard Univesity cancer centre. I am curious, though, why you are getting radiation if there was no indication of any tumours left (if the cancerous lymph ones were removed during surgery?). Lily, any comments on this? I was told by my oncologist that radiation would serve no purpose if there is no tumour(s) large enough to radiate.
    Re the doom and gloom oncologist who hasn't worked on this type of cancer and the one who has - well, I guess I would want some experience there, someone who was positive, and someone who I could relate to and above all liked. You don't need doom and gloom!
    Wow! an earthquake while you were in the hospital bed. Brave sister!

    I'm so glad you made it through surgery so well.


    Cheryl

    GBC
    Cheryl,

    I'm finally set up for radiation and chemo together (adjavunt therapy) starting on Monday 8/16/10. It will be 6 weeks since my liver resection surgery and node removal and the incision has healed great. Hope the incision doesn't reopen with radiaition as I guess that sometimes happens. I will be taking oral Zeloda (Capecitabine) during radiation (25 treatments) and then after a cooling off period of a month I will be taking I believe Gemcite and Cisplatin for the remainder of my chemo cycles. The radiation is aimed at the node bed area. I had 15 nodes removed and 12 were malignant. Anyhow that's the treatment plan. Have you started chemo yet? All of the side effect literature sure is scary but I'm trying not to dwell on it now. Just want to get through this and get it behind me. Let me know how it's going with you.

    Linda
  • Linda1949
    Linda1949 Member Posts: 13
    Lily50 said:

    Linds's Chemo and Radiation Journey
    Hi Linda,

    So glad to hear from you! Thank Kathleen for me for keeping us updated on your progress. She sounds like a great sister, and you are lucky to have her. That is a true statement when you say you have to be careful what you eat. As you get farther into chemo and radiation you become more and more cautious with everything you do. Your goal is to recover from this terrible disease and go on with your life. It may not be the same life you had before but it some ways it can become a better life for you. Stress and negativity will no longer have a place in your life. You will no longer have time for it. I think that the treatment plan protocols have both radiation and chemo lumped together. But I think that it depends on the person's circumstances. Some people have both before surgery or after surgery and others not at all. I think it depends on the stage of the cancer also. If you like the second oncologist better than the first one than I would choose him. I would feel that it is better to deal with someone who has experience with treating gallbladder chancer. But again that is just my opinion, and you need to make your own decision regarding what is best for you. I think all the doom and gloom that the doctor's project is just based on what they have read. It is hard to be positive about something that they haven't seen much success with. But that is just because they haven't met all of us. We are quite a positive group here.

    It is wonderful that you are taking the time to look after yourself. But be mindful that you just had major surgery and your body needs time to heal and rest a little bit. Don't forget to work on your mental attitude also. That is very important. I'm not saying that you won't have blue days, but just remember that you have every right to feel a little down but the next day will be better and remember that we are here for you.

    Take Care
    Lily

    Linda's journey through treatment for GBC
    Lily,

    Thanks for all the information and support. I was feeling pretty blue there for awhile but am feeling much better now. It's been 5 weeks since my liver resection and node removal and I have healed pretty well. I will start chemo (oral Xeloda) and radiation on Monday 8/16/10 for 25 treatments. They are radiating the node bed area where the malignant nodes were removed. The plan is to rest for a month after the 25 treatments and then start a combo chemo cycle with 2 drugs that there has been some success with for GBC. How was radiation for you? The side effects for chemo and radiation both are pretty daunting but I'm hoping that I won't have too much trouble. My greatest fear is that I won't be able to finish treatment but I'm trying to be positive. Just anxious to get on with it! Thanks for all your support. I'll let you know how it goes.

    Linda
  • Lily50
    Lily50 Member Posts: 209
    DeeMatt said:

    Brother it stage Four Gall Bladder Cancer
    My brother has stage four Gall Bladder Cancer and the oncologist who just informed us of this last Friday July 30, 2010, we are still in shock over this. He has had one hard time of it with two lesions on the liver. He will be getting Gemzar as well with two weeks on and then one week off. His Doctor said that at the end of 90 days they will do a MRI or PET scan to see if the tumors have shrunk at which time the surgeon who did the laprascopy will operate to remove the gall bladder and re-section the liver, the othe possibility will be the new cyber knife radiation with only three to five treatments, he has been suffering with blood clots in the lungs as well as the right leg. He also had a stint put in the bile duct which was filled with stones, his jaundice is about gone, He is now in rehab trying to get stronger for the Chemo! He also had to have a filter put in his abdomen for the blood clots.
    He started out with a dry hacking cough in March which probably was lung blood clots, nothing was found until July, he has lost 35 pounds and had no appetite. His Doctor gave him antibiotics and cough meds, not looking any further into his problems. He also is getting over a bad blood infection.
    On the bright side, if there is one,he has come thru all of this, and regardless of the outlook I believe he is going to make it, where there is life there is Hope. He is one of the most wonderful people you could ever meet.
    If anyone needs a great surgeon dealing with the liver her name is Dr. Ellen Hegopian and she is at Jersey Shore University Medical Center, she found my brothers problem in less then 48 hours after being admitted. I just wish we had had her in March or April when he may of been stage three ....
    Good Luck with Genzar and keep in Touch.

    Dee's Brother
    Hello and welcome to this forum. I'm so sorry to hear about your brother and this terrible diagnosis. I am a gall bladder stage IV cancer survivor. Ask me anything you want and I'll try to answer.
    Quite a number of us also had lesions on the liver. Sounds like he is receiving the standard protocol for this disease. Gemzar is a very good chmo drug and has shrunk many turmors for others. He has already experienced many hills and valleys and is fighting a tough fight. I wish him well and with everyday that passes he will get stronger for his chemo battle.
    It amazes me that many doctor's miss the signs of this disease. It takes a caring and compassionate doctor to find these issues and it is usually in a very short time frame. There are some bad doctor's, some good doctor's and then there are some great doctor's. If we are lucky enough to find them they can ultimately save our lives. Dr. Hegopian sounds like a great one!
    Hope & Faith will carry you through on this journey.

    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    Linda1949 said:

    Linda's journey through treatment for GBC
    Lily,

    Thanks for all the information and support. I was feeling pretty blue there for awhile but am feeling much better now. It's been 5 weeks since my liver resection and node removal and I have healed pretty well. I will start chemo (oral Xeloda) and radiation on Monday 8/16/10 for 25 treatments. They are radiating the node bed area where the malignant nodes were removed. The plan is to rest for a month after the 25 treatments and then start a combo chemo cycle with 2 drugs that there has been some success with for GBC. How was radiation for you? The side effects for chemo and radiation both are pretty daunting but I'm hoping that I won't have too much trouble. My greatest fear is that I won't be able to finish treatment but I'm trying to be positive. Just anxious to get on with it! Thanks for all your support. I'll let you know how it goes.

    Linda

    Linda's journey
    Hi Linda,

    Don't despair you will have good and bad days, that you can count on. I'm so glad that you haven't had any issues with the surgery, it really is great news. Good luck on Monday with the radiation and chemo. Get a calendar and mark off the treatments as you complete them that way you always have a visual of how far you have come. I didn't have any radiation as my liver was in bad shape. My treatment was a little different than others because in the beginning I wasn't a candiate for surgery. I had to complete 10 months of chemo only having 1 week off a month. My turmors had to shrink alot in order for me to have a radical resection surgery (it was done by a liver transplant surgeon that I was told was a pioneer for this type of surgery). After surgery the pathology report stated that some of the lymph nodes that they removed still had some cancer cells in them. That meant 4 months more of chemo for me. You have to bring out that inner strength that you have inside to continue to fight and then recover. Staying positive is part of the battle, and try and break the treatment down into manageable pieces for your own sanity. You have already been through so much just keep going. Keep in touch and if it becomes overwhelming I know that Kathleen would let us know what is going on with you. Tell her I said HI!

    Take Care
    Lily
  • maudsie
    maudsie Member Posts: 54
    Linda1949 said:

    Linda's journey through treatment for GBC
    Lily,

    Thanks for all the information and support. I was feeling pretty blue there for awhile but am feeling much better now. It's been 5 weeks since my liver resection and node removal and I have healed pretty well. I will start chemo (oral Xeloda) and radiation on Monday 8/16/10 for 25 treatments. They are radiating the node bed area where the malignant nodes were removed. The plan is to rest for a month after the 25 treatments and then start a combo chemo cycle with 2 drugs that there has been some success with for GBC. How was radiation for you? The side effects for chemo and radiation both are pretty daunting but I'm hoping that I won't have too much trouble. My greatest fear is that I won't be able to finish treatment but I'm trying to be positive. Just anxious to get on with it! Thanks for all your support. I'll let you know how it goes.

    Linda

    hi Linda and Lily
    Hello Linda. I have corresponded with Lily before, but just today I have been following this thread and wanted to chime in my best wishes as you start your chemo and radiation today. My liver resection (cancer invaded the section of liver they removed, no where else detected) was two years ago, followed by Xeloda and radiation. As Lily says, there are good days and bad, but actually no really bad days for me. I was thinking that i would have to organize a team of friends to drive me to and from my daily radiation appointments 30 minutes from my house, but actually I was able to drive myself every day. In general I was a bit tired, less energy than my "normal" self, but i could do errands and pretty much enjoy myself. After a while, some weeks, the Xeloda started giving me a kind of stomach discomfort, but again, not really awful. Everyone's experience, of course, is individual. After these treatments, my protocol was Gemzar. I am now more than 2 years from my diagnosis, feeling great, no sign of cancer, but of course i get regular scans and blood tests to keep track. My next CT scan is Aug. 31. Naturally I am anxious about it. I will be interested in hearing how you do. I also write on the cancer-compass message board, you can look there for more stories and advice. Advice from me, besides what you have already heard: keep a journal so you can keep track of how you are feeling, both emotionally and physical (symptoms, side-effects).
    Maudsie
  • kjgrieger
    kjgrieger Member Posts: 6
    Lily50 said:

    Gallbladder Cancer Stage 4
    Hi,
    I too was diagnosed with gallbladder cancer stage 4 in the fall of 2005. My husband later told me that I was given a short time frame also. Well they were wrong!

    I had aggressive chemotherpy for almost a year to shink my turmor so that they could operate on my gallbladder, liver, stomach and removal of lymph nodes. I have a great oncologist in Las Vegas, Nevada and had my surgery at UCLA in California. I completed my chemo in March 2007.

    I never lost my HOPE or FAITH and no doctor should ever be allowed to take away your HOPE.

    If I can help answer any questions just let me know. It is a hard road but it is worth it. Every day becomes a blessing.

    My mom went in to have her
    My mom went in to have her gallbladder removed and they found that an area of her gallbladder was "suspicious" , as well as a couple spots on her liver. It is cancer. Did your doctor tell you upfront that surgery was an option or not? What kind of chemotherapy regimen were you on? How large were your tumors to begin with and what did they want to shrink them to in order to surgically remove them? I understand that they need to do chemo first to shrink the areas. It seemed like the doctors that I spoke with thought surgery may not be an option? I sometimes feel like they are afraid to say anything and all I have is a million questions! My mom is in fantastic health otherwise!!! Any help you can offer would be so greatly appreciated!
    ~Kellie
  • kjgrieger
    kjgrieger Member Posts: 6
    Lily50 said:

    Gallbladder Cancer Stage 4
    Hi,
    I too was diagnosed with gallbladder cancer stage 4 in the fall of 2005. My husband later told me that I was given a short time frame also. Well they were wrong!

    I had aggressive chemotherpy for almost a year to shink my turmor so that they could operate on my gallbladder, liver, stomach and removal of lymph nodes. I have a great oncologist in Las Vegas, Nevada and had my surgery at UCLA in California. I completed my chemo in March 2007.

    I never lost my HOPE or FAITH and no doctor should ever be allowed to take away your HOPE.

    If I can help answer any questions just let me know. It is a hard road but it is worth it. Every day becomes a blessing.

    My mom went in to have her
    My mom went in to have her gallbladder removed and they found that an area of her gallbladder was "suspicious" , as well as a couple spots on her liver. It is cancer. Did your doctor tell you upfront that surgery was an option or not? What kind of chemotherapy regimen were you on? How large were your tumors to begin with and what did they want to shrink them to in order to surgically remove them? I understand that they need to do chemo first to shrink the areas. It seemed like the doctors that I spoke with thought surgery may not be an option? I sometimes feel like they are afraid to say anything and all I have is a million questions! My mom is in fantastic health otherwise!!! Any help you can offer would be so greatly appreciated!
    ~Kellie
  • Lily50
    Lily50 Member Posts: 209
    kjgrieger said:

    My mom went in to have her
    My mom went in to have her gallbladder removed and they found that an area of her gallbladder was "suspicious" , as well as a couple spots on her liver. It is cancer. Did your doctor tell you upfront that surgery was an option or not? What kind of chemotherapy regimen were you on? How large were your tumors to begin with and what did they want to shrink them to in order to surgically remove them? I understand that they need to do chemo first to shrink the areas. It seemed like the doctors that I spoke with thought surgery may not be an option? I sometimes feel like they are afraid to say anything and all I have is a million questions! My mom is in fantastic health otherwise!!! Any help you can offer would be so greatly appreciated!
    ~Kellie

    Kellie's Mom
    Hi Kellie,

    Welcome to our small but strong group of Gallbladder Cancer patients, caregrivers, loved ones and survivors. In alot of cases when they remove the gallbladder it is then that they determine that cancer is present. Yes, I was told in the begining that surgery was not an option at this time, nor radiation. We would have to get shrinkage in the tumors which were quite large, my liver was comprimised therefore no radiation. I just kept after my oncologist because I needed him to refer me out of state to a surgeon. Where I live there was no one qualified to do this type of surgery. I ended up with a Liver Transplant Surgeon at UCLA in California. He also told me two times when I went to see him that no he wouldn't do the surgery. On the third time after 11 months of chemo for whatever reason he said yes. I still had cancer cells in some of the lymph nodes that they removed so I had to complete an additional 3 months of chemo.You have to fight and be an advocate for your own healthcare.
    My chemo cocktail was Gemzar and Cisplatin. I went 4 days a week (5-8 hours) three weeks then I would have a week off. I had to have both white and red blood cell shots in between those times, when my counts we too low. I started my chemo December 28th, 2005, surgery October 13, 2006 (Friday the thirteenth), last chemo March 31, 2007. I still see my oncologist every month and have blood drawn. I was receiving Ct Scans every three months until this year. Yes, I do glow in the dark!
    I think that doctors are very cautious when dealing with this disease as the statistics are outdated and this disease is coming to the forefront. I'm glad that your mother is beginning this journey without any other major medical problems. I too was in relative good health when I started and I was only 46 years old. My email address is LGregg6293@Aol.Com if you would prefer to speak via email. Just make sure you put ACS-CSN in the subject line so it won't end up in my spam folder. Ask me anything you would like.
    Take Care and I will add your mom to my prayer list. Hope and Faith will carry you through.
    Lily
  • Lily50
    Lily50 Member Posts: 209
    maudsie said:

    hi Linda and Lily
    Hello Linda. I have corresponded with Lily before, but just today I have been following this thread and wanted to chime in my best wishes as you start your chemo and radiation today. My liver resection (cancer invaded the section of liver they removed, no where else detected) was two years ago, followed by Xeloda and radiation. As Lily says, there are good days and bad, but actually no really bad days for me. I was thinking that i would have to organize a team of friends to drive me to and from my daily radiation appointments 30 minutes from my house, but actually I was able to drive myself every day. In general I was a bit tired, less energy than my "normal" self, but i could do errands and pretty much enjoy myself. After a while, some weeks, the Xeloda started giving me a kind of stomach discomfort, but again, not really awful. Everyone's experience, of course, is individual. After these treatments, my protocol was Gemzar. I am now more than 2 years from my diagnosis, feeling great, no sign of cancer, but of course i get regular scans and blood tests to keep track. My next CT scan is Aug. 31. Naturally I am anxious about it. I will be interested in hearing how you do. I also write on the cancer-compass message board, you can look there for more stories and advice. Advice from me, besides what you have already heard: keep a journal so you can keep track of how you are feeling, both emotionally and physical (symptoms, side-effects).
    Maudsie

    Maudsie
    Hi Maudsie,

    Good to hear from you. No matter how many scans you go through it is one of the most nerve racking things you have to do. I will say a prayer for you that you will hear the words, No Malignancies. Do you have a complete scan, chest, abdomen, pelvis with and without contrast? I'm sure if you are like me it really doesn't bother you to drink that awful stuff. I'm glad that you are doing so well.
    Take Care
    Lily
  • westie66
    westie66 Member Posts: 642
    Linda1949 said:

    GBC
    Cheryl,

    I'm finally set up for radiation and chemo together (adjavunt therapy) starting on Monday 8/16/10. It will be 6 weeks since my liver resection surgery and node removal and the incision has healed great. Hope the incision doesn't reopen with radiaition as I guess that sometimes happens. I will be taking oral Zeloda (Capecitabine) during radiation (25 treatments) and then after a cooling off period of a month I will be taking I believe Gemcite and Cisplatin for the remainder of my chemo cycles. The radiation is aimed at the node bed area. I had 15 nodes removed and 12 were malignant. Anyhow that's the treatment plan. Have you started chemo yet? All of the side effect literature sure is scary but I'm trying not to dwell on it now. Just want to get through this and get it behind me. Let me know how it's going with you.

    Linda

    GBC
    Hi Linda: Sorry I haven't responded earlier than this but somehow I've been very busy getting lectures ready for fall term and as usual waiting for the nurse to unpack/repack my incision and seeing the surgeon and oncologist. Still can't start chemo because the incision hasn't healed completely (been 4 months now!). I see the oncologist again on Sept 9 (school starts Sept 13). I had hoped to be well into it by now but ... At least I've had time to get as healthy as possible and to get caught up on life. I'm not getting radiation because there is nothing to radiate. I'm going to ask though about radiation for the nodules on my upper intestine - there are only 1 or 2 left (they removed 1 for analysis). My chemo protocol will be 6 cycles, day 1 of cycle 1 the two drugs together (5 hours), day 2 of cycle 1 seven days later just the gem.....(2 hrs), cycle 2 starts 3 weeks later and so on. MRI or CT scan at the end of 6 cycles which will be about February is things get going in September. I too am worried about the side effects but some people have none, some people have lots. I went to a chemo workshop - there are different side effects for each drug - the gem...is the most gentle. The only good thing is that they give you a DVD player so you can watch movies! I will have people drive me there and back, at least at first.
    I am off to Saskatchewan to visit my 94 year old mom for a few days.
    Please keep me posted on your journey.

    Cheryl
  • kamichailo
    kamichailo Member Posts: 1
    Lily50 said:

    Teresa's Dad
    Hi Teresa,

    Welcome to our little forum. Your Dad's story sounds so familiar to all of us here. Dignosed with gallbladder cancer after removal of his gallbladder. Mets to the liver therefore no surgery yet. Sounds like he is doing well with his treatment and it is working on shrinking his tumor. Gemzar and Cysplatin cocktail seems to be the chemo cocktail of choice lately. It is the cocktail that I had and I am a survivor. This is a very difficult cancer to treat because the statistics are old and outdated. It is becoming more and more recognized almost up there with pancreatic cancer. Once my treatment plan was completed and my oncologist stated we needed to have surgery to get the turmors out then additional chemo after surgery I was ready for it. It took 10 months from diagnosis to surgery when I was originally told twice that there was nothing the surgeon could do for me. I wasn't willing to accept that and I did my best to do everything in my power to get rid of the cancer that was invading my body.

    Have you checked the Liver Cancer forum board for your questions. There is alot of information there regarding alternative treatments.

    How old is your Dad? He is a lucky man to have a daughter that loves and cares about him enough to want him to be with her always.

    Take Care and let us know how he is progressing.
    Lily

    Stage IV that has moved to the stomach not the liver
    Does anyone have a story where the cancer has moved into the stomach. We were told inoperable and incurable.

    Thanks for any ray of hope.
  • maudsie
    maudsie Member Posts: 54
    Lily50 said:

    Kellie's Mom
    Hi Kellie,

    Welcome to our small but strong group of Gallbladder Cancer patients, caregrivers, loved ones and survivors. In alot of cases when they remove the gallbladder it is then that they determine that cancer is present. Yes, I was told in the begining that surgery was not an option at this time, nor radiation. We would have to get shrinkage in the tumors which were quite large, my liver was comprimised therefore no radiation. I just kept after my oncologist because I needed him to refer me out of state to a surgeon. Where I live there was no one qualified to do this type of surgery. I ended up with a Liver Transplant Surgeon at UCLA in California. He also told me two times when I went to see him that no he wouldn't do the surgery. On the third time after 11 months of chemo for whatever reason he said yes. I still had cancer cells in some of the lymph nodes that they removed so I had to complete an additional 3 months of chemo.You have to fight and be an advocate for your own healthcare.
    My chemo cocktail was Gemzar and Cisplatin. I went 4 days a week (5-8 hours) three weeks then I would have a week off. I had to have both white and red blood cell shots in between those times, when my counts we too low. I started my chemo December 28th, 2005, surgery October 13, 2006 (Friday the thirteenth), last chemo March 31, 2007. I still see my oncologist every month and have blood drawn. I was receiving Ct Scans every three months until this year. Yes, I do glow in the dark!
    I think that doctors are very cautious when dealing with this disease as the statistics are outdated and this disease is coming to the forefront. I'm glad that your mother is beginning this journey without any other major medical problems. I too was in relative good health when I started and I was only 46 years old. My email address is LGregg6293@Aol.Com if you would prefer to speak via email. Just make sure you put ACS-CSN in the subject line so it won't end up in my spam folder. Ask me anything you would like.
    Take Care and I will add your mom to my prayer list. Hope and Faith will carry you through.
    Lily

    some good news
    I am happy to report to my latest CT scan continued to show NO evidence of cancer. It's been more than 2 years now. My port is going to be removed next week. YAY!
    Maudsie
  • Lily50
    Lily50 Member Posts: 209

    Stage IV that has moved to the stomach not the liver
    Does anyone have a story where the cancer has moved into the stomach. We were told inoperable and incurable.

    Thanks for any ray of hope.

    Stage IV moved to the stomach not the liver
    Good Morning,

    Welcome to this forum. How long ago was the diagnosis? Have you already gotten a second opinion? In most cases of stage IV gallbladder cancer the stomach is almost always involved. That it isn't in the liver might be a blessing.
    I too was told that my cancer was inoperable and incurable, but I have survived (2005) and there are others out there with similiar stories to mine. Chemo and radiation can change the dynamics of the present situation. Doctor's are allowed to change their minds from the initial diagnosis. You have to have Hope and Faith to get you through this. Maudsie just posted today that she is now cancer free for two years. You can get through this just ask for help. There are alot of people who are going thru this right now along with others who have been through what you are going through. Let us try to help you in any way we can. There are lots of stories of others that were told no surgery in the beginning but in the last month I know of three surgeries that have happened when nine months ago they were told inoperable. My defination of "inoperable" means "just not yet".
    Let's us know what part of the country you are in so maybe someone is your immediate area can connect with you. This board has become a ray of hope for others and it can be for you also.

    Take Care
    Lily
  • newnewkb
    newnewkb Member Posts: 2
    Lily50 said:

    Gallbladder Cancer Stage 4
    Hi,
    I too was diagnosed with gallbladder cancer stage 4 in the fall of 2005. My husband later told me that I was given a short time frame also. Well they were wrong!

    I had aggressive chemotherpy for almost a year to shink my turmor so that they could operate on my gallbladder, liver, stomach and removal of lymph nodes. I have a great oncologist in Las Vegas, Nevada and had my surgery at UCLA in California. I completed my chemo in March 2007.

    I never lost my HOPE or FAITH and no doctor should ever be allowed to take away your HOPE.

    If I can help answer any questions just let me know. It is a hard road but it is worth it. Every day becomes a blessing.

    Tina's Mom
    Hi Lily,
    Thank goodness I found you and to hear that you are GBC survivor! Internet and the information shared by the oncologist did not give us the best future for this cancer.
    My mom who is 66 years young has been diagnosed on Sept.3, 2010 with stage 4 GBC that has metastasized to liver. The oncologist said no surgery due to the type of cancer. She’ll start her chemo combo of Gemcitabine and Oxaliplatin next week. Is this the standard protocol of treatment for this cancer? Is there anything else that can be considered “more aggressive” to treat this cancer? What else can we do for my mom? I want to make sure that we are looking into all options so that my mom has a greater chance to fight this thing. She lives on the north side of Chicago and if anyone knows of a great oncologist, that would be great start to get her a second opinion.
    Also, can anyone tell me about the experienced side effects from this chemo combo and how you coped so that I can prepare to help my mom after her treatments? Thanks, Tina.
  • kjgrieger
    kjgrieger Member Posts: 6
    maudsie said:

    some good news
    I am happy to report to my latest CT scan continued to show NO evidence of cancer. It's been more than 2 years now. My port is going to be removed next week. YAY!
    Maudsie

    Congratulations!
    I was reading your post and was so happy to see that you are cancer free! I am sure that is a wonderful feeling. My mom is undergoing chemo for gallbladder cancer and we will know the week of October 11th-ish how well her chemo treatments are working. I pray everyday that she will receive the same news as you soon! Thank you for your positive post - gives people hope! Take care of yourself!

    Kellie