Gallbladder Cancer - 2011

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Comments

  • maudsie
    maudsie Member Posts: 54
    SusanCH said:

    May I Join Your Discussion Group?
    Hi
    My first time to this discussion board. My name is Susan and I was diagnosed with gallbladder cancer that has spread to the stomach lining. I too have been told that surgery is not an option because the cancer has spread and that I have a very short life expectancy. I am 55 years old and otherwise have no health problems. I have no pain. My original symptom was nausea which I still have but I can't tell if that is due to the cancer, chemo, dehydration, or?. I have been getting Gemcitabine and Cisplatin once a week for two weeks followed by a week off. I am being treated at the University of Wisconsin - Madison cancer center by an oncologist. He is using the CA-19-9 as a marker and it originally was 132 but has gone down to 92 since starting chemo treatments in February.

    I wonder if I should question my doctor about possible surgery? Is there a certain point in treatment where surgery becomes an option? Also am curious why he seems to be using a different marker than what others are talking about. Really, any advice anyone can give me in terms of how to approach this would be helpful. I have been shy about asking for a second opinion because my oncologist has seemed happy with the results he has been getting. Perhaps I should be more assertive about that. Does anyone have any advice about the types of questions I should be asking?

    Any help is much appreciated. Susan

    Hi Susan
    Hi Susan......oh I am always sorry to see a new person here! On the other hand, welcome! The good news is that you are relatively young and otherwise healthy. ...that will be in your favor as you go along. Also your chemo combo is a great one, and seems to be the one most used these days. The CA19-9 is the right cancer marker to follow, also. There are others, like the CEA, but the CA19-9 is most appropriate for GBC. Understand, however, that the CA19-9 is not really an accurate representation of anything much. Good to follow for general trends, though.
    As far as a surgical option.....well, I just don't know. Generally if the cancer has moved from one discreet area (that might be surgically removed) to be more widespread, it would be hard to surgically remove all. Since your cancer is in your stomach lining, here's an option to explore: peritoneal chemoperfusion. A high dose of chemo, much more concentrated than what you would get through an IV, is warmed up and introduced directly into your abdominal cavity via a catheter and allowed to sit there for a while and then it is drained out. Good local exposure to the chemo without the systemic side-effects. This is a newer option and may only be available in limited places and under limited situations. Worth asking about however, don't you think?
    Best of luck to you, Maudsie
  • Sharon Lee
    Sharon Lee Member Posts: 4
    Lauren21 said:

    What have you done?
    Lily,

    Your story sounds a lot like my mom's. She has been recently diagnosed wtih gall bladder cancer, Stage IV. She cannot have resection surgery. She is 48.

    I saw your age at diagnosis was 46 and that you are a six-year survivor. Since mom is close to the age you were when you started your journey, I'd like to know your chemo regimen and everything you've done to battle your cancer thus far.

    Also, I am really pushing mom to get involved in nutritional therapy. Have you taken a nutritional approach (juicing, detoxing, raw veggies, supplements, etc)? Do you work? Do you exercise?

    Also, are you opposed to contacting others via phone? Mom doesn't have internet, so she can't actively participate in this discussion board, but it might raise her spirits to talk with someone who is battling the same thing that she is.

    Thanks, I REALLY look forward to hearing from you!

    --Lauren

    Gallbladder Cancer - Surgery recovery - stomach pain
    Hi Everyone:
    My husband, age 53 has gb cancer. He had very extensive surgery on May 4, 2011. His surgery was very similar to Lily's surgery - liver, gb, bile duct, part of colon and part of pancreas.
    My first comment is to anyone who is facing this cancer. You have to be a very good advocate for yourself to fight against this cancer. We were told my husband's cancer was too advanced and invasive for surgery but knew that surgery was his only hope. If you are young and in good health - get the surgery. It can be a tough surgery to recover from but the alternative is not good. Keep fighting for the surgery if you can.
    Now with regard to my question - he is three months post surgery and still has periods of intense pain. He describes it as gas pain and it makes him bed ridden sometimes. Has anyone had this and if yes, I am hoping it goes away over time? He is going to watch his diet (limit sugars and fats) to see if this helps. He takes Creon 25 to help digest his food.
  • westie66
    westie66 Member Posts: 642

    Gallbladder Cancer - Surgery recovery - stomach pain
    Hi Everyone:
    My husband, age 53 has gb cancer. He had very extensive surgery on May 4, 2011. His surgery was very similar to Lily's surgery - liver, gb, bile duct, part of colon and part of pancreas.
    My first comment is to anyone who is facing this cancer. You have to be a very good advocate for yourself to fight against this cancer. We were told my husband's cancer was too advanced and invasive for surgery but knew that surgery was his only hope. If you are young and in good health - get the surgery. It can be a tough surgery to recover from but the alternative is not good. Keep fighting for the surgery if you can.
    Now with regard to my question - he is three months post surgery and still has periods of intense pain. He describes it as gas pain and it makes him bed ridden sometimes. Has anyone had this and if yes, I am hoping it goes away over time? He is going to watch his diet (limit sugars and fats) to see if this helps. He takes Creon 25 to help digest his food.

    Gallbladder Cancer Surgery
    Hi: I can't comment on intense pain after gallbladder cancer surgery because I didn't have any (my surgery just removed the gallbladder, its tumour, and that part of the liver that the tumour had penetrated). But the pain sounds like the body trying to deal with the lack of a gallbladder. The gallbladder had a job to do and it is not there. Eliminating lots of fats from the diet is a great start!

    But I do want to comment on Sharon Lee's plea to fight this cancer. This is especially true in Canada where it is very rare. I would urge anyone who has the slightest twinge of pain in the typical place for gallbladder stone "attacks" - across the mid to upper back - especially women (women are particularly susceptibe to gallstones and hence gallbladder cancer) to find out more about it. Immediately. Mine was discovered because of an increased liver enzyme during a regular physical. A CT scan can "see" if there are tumours protruding from the gallbladder. Unfortunately gallbladder cancer is usually not discovered until surgery to remove gallstones or the gallbladder with its stones and often that is too late. As well, it's been my experience and that of the few others here in Canada who have/had this disease, that surgeons are reluctant to remove a tumour above a certain size and recommend chemo to reduce it. But if the patient can't tolerate the chemo, the tumour just grows and grows and spreads.

    There is a protocol for gallbladder cancer surgery as well that isn't widely known, at least here in Canada. Usually the news is, nothing we can do until ... or even more final than that. I did have surgery followed by chemo. But three other gallbladder cancer patients that I know of did not and they are gone. So don't accept the "nothing we can do" statement! You really do have to fight for treatment because it is not a common cancer and one that has poor treatment results. But several of us are still here, and we had the surgery. Another thing to watch for is seeding from the gallbladder tumour to other places in the body, especially the liver, peritoneum, omentum, pancreas.

    Thanks Sharon Lee for mentioning this.

    Cheryl
  • SusanCH
    SusanCH Member Posts: 4
    maudsie said:

    Hi Susan
    Hi Susan......oh I am always sorry to see a new person here! On the other hand, welcome! The good news is that you are relatively young and otherwise healthy. ...that will be in your favor as you go along. Also your chemo combo is a great one, and seems to be the one most used these days. The CA19-9 is the right cancer marker to follow, also. There are others, like the CEA, but the CA19-9 is most appropriate for GBC. Understand, however, that the CA19-9 is not really an accurate representation of anything much. Good to follow for general trends, though.
    As far as a surgical option.....well, I just don't know. Generally if the cancer has moved from one discreet area (that might be surgically removed) to be more widespread, it would be hard to surgically remove all. Since your cancer is in your stomach lining, here's an option to explore: peritoneal chemoperfusion. A high dose of chemo, much more concentrated than what you would get through an IV, is warmed up and introduced directly into your abdominal cavity via a catheter and allowed to sit there for a while and then it is drained out. Good local exposure to the chemo without the systemic side-effects. This is a newer option and may only be available in limited places and under limited situations. Worth asking about however, don't you think?
    Best of luck to you, Maudsie

    Thanks for your tip on chemoperfusion.
    Maudsie,
    Thanks for your tip on chemoperfusion. I just spoke with my oncologist yesterday again about surgery and he really thinks that removing the gallbladder can cause more problems than it solves. He also mentioned that my cancer had spread into the stomach lining but had not spread to the liver amd that was also a reason why surgery was not appropriate.

    Thanks to someone elses advice I have an appointment at the Mayo Clinic in a couple of weeks to get a second opinion on options. I will bring up chemoperfusion during my consult.

    It's frightening, I think, to explore these possibilities. I'm afraid of hearing answers I don't want to hear or else answers that will force me into tough decisions.

    Take care,
    Susan
  • bjs
    bjs Member Posts: 23
    Lily50 said:

    Your Welcome!
    Hi Betty,

    Good to hear from you! I'm so glad our responses are helpful to you. We all get down sometimes but on those days just let the world pass you by and just rest. Tomorrow is another day and it will be better. Tests are never easy but you just have to get through them. I know that at this point in my life I probably glow in the dark!
    I'm so glad that your doctors are giving you positive feedback. They know that you are doing well and having a positive attitude can really help. Never give up on the possiblity of surgery. It took me almost a year and three visits to the surgeon (in another state) and repeated tests before I was give the chance of a lifetime. Maybe because I just kept coming back that he decided that I was never going to go away. Who knows??
    Thanks for sharing the book on "The Journey through Cancer Healing and Transforming the Whole Person", I haven't read that one and I will be sure to pick it up. I truly believe that you have to have the whole influence of Eastern and Western medicine for total body wellness. Since this disease attacks the physical as well as the mind, body and spirit you have to care for them all, not just the physical. Thanks again!
    Let us know how you are doing, keep us updated.
    Take Care
    Lily

    Bumpy road
    Hi All,

    I had my bile duct stent replaced this week and it was the first of the three that was planned and routine, not an emergency. It went very smoothly and the doctor said that the insertion of the new stent was very easy. Of course, my hope is that the cancer has shrunk as a result of the radiation and chemo. Because the stent pathway bypasses the cancer, my doctor could not tell if that was the case.
    I have had a few more bumps due to chemo issues. I spent the weekend in the hospital a couple of weeks ago due to a "fever of unknown origin." All that the tests showed was a slight sinus infection that should not have caused a high fever. But the hospital stay proved to be fortuitous because they did blood tests ad discovered that my WBC and RBC were dangerously low. I had two units of red blood cells and now will have shots every two weeks to keep the WBC up. the first shot caused severe bone pain but I was told that to prevent that in the future, I should take Claritin-D for a day before the shot and for several days after. Seems bizarre to me, but it works!
    I have also developed blood clots in a vein in each arm and one of those caused cellulitis. I am on an antibiotic for it and it is better.
    All of these things may be caused by my deciding not to get a port. Because the infusion of Gemzar burns, the nurses have reduced the flow and that increases side effects such as mine. So i have decided to get a port and have scheduled that. I will have one more infusion in my arm next week but that will be the last before the port is installed. Since I need this chemo through December, I do not want to chance more serious side effects, especially the low blood cell counts.
    I find all of this has gotten me down but I try to remember that none of it directly relates to the cancer and there is no reason to believe that it has worsened. In fact, the testing has been mostly good so I push on!
    All the best,
    Betty
  • Lily50
    Lily50 Member Posts: 209
    SusanCH said:

    May I Join Your Discussion Group?
    Hi
    My first time to this discussion board. My name is Susan and I was diagnosed with gallbladder cancer that has spread to the stomach lining. I too have been told that surgery is not an option because the cancer has spread and that I have a very short life expectancy. I am 55 years old and otherwise have no health problems. I have no pain. My original symptom was nausea which I still have but I can't tell if that is due to the cancer, chemo, dehydration, or?. I have been getting Gemcitabine and Cisplatin once a week for two weeks followed by a week off. I am being treated at the University of Wisconsin - Madison cancer center by an oncologist. He is using the CA-19-9 as a marker and it originally was 132 but has gone down to 92 since starting chemo treatments in February.

    I wonder if I should question my doctor about possible surgery? Is there a certain point in treatment where surgery becomes an option? Also am curious why he seems to be using a different marker than what others are talking about. Really, any advice anyone can give me in terms of how to approach this would be helpful. I have been shy about asking for a second opinion because my oncologist has seemed happy with the results he has been getting. Perhaps I should be more assertive about that. Does anyone have any advice about the types of questions I should be asking?

    Any help is much appreciated. Susan

    Susan's Journey
    Hi Susan,

    Welcome to our board. I see that everyone has jumped in and hopefully made you feel welcomed. I'm Lily and I am a 5 1/2 year Stage 4 Gallbladder Cancer Survivor. I too was told the dreaded words inoperable and get your affairs in order at tender age of 46. My cancer had spread to my liver, stomach lining, bile ducts, and lymph nodes. I really only had lower back pain (which I have had all my life), nausea and tightness in my chest. I was healthy and didn't even have a doctor. My life changed on a dime with the news.
    I had a very aggressive form of treatment that didn't include radiation as my liver was compromised. My chemo cocktail was Gemzar and Cisiplatin also. It is really good news that your marker is going down. That means that the chemo is working for you.

    Of course you should question the doctor. You have to be your own advocate in this situation. I believe in second, third, and fourth opinions. Don't be shy; you won't hurt your oncologist’s feelings. You have to have total confidence in the team that is working with you and going down the road with you. If you are not willing to give up then don't let your doctor give up on you. I think that my oncologist (by the way a wonderful man) said it best. Chemo is the science and surgery is the art. I was told numerous times by the surgeon that he couldn't do anything for me, go back and get more chemo. I did 11 months of chemo before I was told by that same surgeon yes. He probably felt that I would just kept coming back until he said yes. Attitude is so very important. I did have to travel to another state to get my surgery but the expense of doing that was well worth it to me. Both doctors gave me a chance to see my daughter grow into adulthood. I had what is called an extended (or radical) cholecystectomy. I had an additional 3 months of chemo after my surgery as the pathology report stated that I still had cancer cells in some of my lymph nodes that they removed. I did that standing on my head since I had been battling for my life for a year! I'm not saying that it was easy because none of it is but you have to try and feel like you are an active participant in the decisions that are being made based on the doctor’s level of expertise. Ask questions as much as you can. If you don't ask they won't tell you because everyone is different and they don't want to plant any ideas in your mind. Write your questions down when you think of them so that when you go you are prepared and not relying on your memory.
    I'm listing my oncologist and surgeons name for anyone who wants to contact them.

    Oncologist:
    Cancer and Blood Specialists of Nevada
    Russell Gollard, MD
    58 N. Pecos Road
    Henderson, Nevada 89074
    702-822-2000
    Green Valley Location

    Howard Reber, MD
    Specialty Surgery
    Hospital Affiliation Ronald Reagan UCLA Medical Center
    Contact (310) 825-4976
    Email Address hreber@surgery.medsch.ucla.edu
    He is associated with The Jonsson Comprehensive Cancer Center.
    http://www.cancer.ucla.edu
    Check out this website, it has lots of good information

    Hope and Faith will carry you through.
    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    Lauren21 said:

    What have you done?
    Lily,

    Your story sounds a lot like my mom's. She has been recently diagnosed wtih gall bladder cancer, Stage IV. She cannot have resection surgery. She is 48.

    I saw your age at diagnosis was 46 and that you are a six-year survivor. Since mom is close to the age you were when you started your journey, I'd like to know your chemo regimen and everything you've done to battle your cancer thus far.

    Also, I am really pushing mom to get involved in nutritional therapy. Have you taken a nutritional approach (juicing, detoxing, raw veggies, supplements, etc)? Do you work? Do you exercise?

    Also, are you opposed to contacting others via phone? Mom doesn't have internet, so she can't actively participate in this discussion board, but it might raise her spirits to talk with someone who is battling the same thing that she is.

    Thanks, I REALLY look forward to hearing from you!

    --Lauren

    Lauren's Mom
    Hi Lauren,

    So glad that you found us! I'm so sorry that this terrible disease has come into your mother's and your lives. Your mom is fairly young and as long as she has been fairly healthy she will be able to battle this beast. It is a long journey with many turns in the road but with good doctors, hope and faith she will be okay.

    I had a very aggressive treatment plan of Gemzar and Cisiplatin. I went 4 days a week - 2 weeks on 1 week off for about 8 hours a day. I also had extra hydration given to me daily. I lost alot of weight, my hair, eyebrows and eyelashes. I ate small meals every couple of hours. Lean protein, vegetables, fruits and smoothies. Many people swear by juicing but after a few times I decided that smoothies were my best bet. Many people drink Ensure/Boost for the nutrition that they need. The only supplement that my oncologist allowed me to take was L-Glutamine. Many other supplements can interfere with the chemo treatment. Check with the oncologist before taking supplements. This disease needs to be approached with the whole body, mind and spirit philosophy. Exercise and meditation was very helpful to me. I no longer work as my career involved lots of travel and was very stressful. This disease changes many things in your life but sometimes for me I feel it was a blessing in disguise. Stress can be very hard on a person’s body and I now look at life quite differently.

    Where are you located at? Sometimes there are people in your immediate area that can be helpful with information. I'm also in the business of connecting people when it is possible.

    I generally don't speak with people via the phone but occasionally I will make an exception. Many people will take questions from their loved ones and post them for a response. Then they read the answers back and people are very comfortable with that. Many people like to know that they are alone in this battle. Let your mom know that she isn't alone and we are all here to help her. I do know as well as others how hard it is to find others with this disease, that it why we do this. I don't ever want anyone to feel as desperate as I did.

    You are a wonderful daughter and I can tell you love your mom very much. You will become her advocate in this battle.

    I will add your mom to my prayer list.
    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209

    Gallbladder Cancer - Surgery recovery - stomach pain
    Hi Everyone:
    My husband, age 53 has gb cancer. He had very extensive surgery on May 4, 2011. His surgery was very similar to Lily's surgery - liver, gb, bile duct, part of colon and part of pancreas.
    My first comment is to anyone who is facing this cancer. You have to be a very good advocate for yourself to fight against this cancer. We were told my husband's cancer was too advanced and invasive for surgery but knew that surgery was his only hope. If you are young and in good health - get the surgery. It can be a tough surgery to recover from but the alternative is not good. Keep fighting for the surgery if you can.
    Now with regard to my question - he is three months post surgery and still has periods of intense pain. He describes it as gas pain and it makes him bed ridden sometimes. Has anyone had this and if yes, I am hoping it goes away over time? He is going to watch his diet (limit sugars and fats) to see if this helps. He takes Creon 25 to help digest his food.

    Stomach Pain
    Hi Sharon,

    Thanks so much for sharing your thoughts. They ring so true for many of us. I too knew that surgery was my only hope and that was a major turning point for me. Even if I ended up with an unsuccessful surgery, what choice did I have? There was no choice. It had to be done. You and your husband felt the same way.

    The trauma of the extensive surgery that your husband had will be with him for awhile. His body has been beaten up very badly and needs time to rest and recover. Pain will become tolerable at some point but might always be with him. His pain medication could be adding the constipation issue. My body lets me know when I have done too much and the scar tissue that the surgery creates isn't fun. He probably has surgical clips in him that sometimes if you move just right; they let you know that they are there. It does get better, it just takes time.

    Sugars and fats are the enemy. His digestive track is different now and it becomes trial and error to see what works and what doesn't. I no longer eat 3 meals a day; I eat 6 meals a day (much smaller portions). It is easier on my stomach to do that. Sometimes I will eat more than I should and again my body reminds me of that.

    Hope this helps!
    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    westie66 said:

    Gallbladder Cancer Surgery
    Hi: I can't comment on intense pain after gallbladder cancer surgery because I didn't have any (my surgery just removed the gallbladder, its tumour, and that part of the liver that the tumour had penetrated). But the pain sounds like the body trying to deal with the lack of a gallbladder. The gallbladder had a job to do and it is not there. Eliminating lots of fats from the diet is a great start!

    But I do want to comment on Sharon Lee's plea to fight this cancer. This is especially true in Canada where it is very rare. I would urge anyone who has the slightest twinge of pain in the typical place for gallbladder stone "attacks" - across the mid to upper back - especially women (women are particularly susceptibe to gallstones and hence gallbladder cancer) to find out more about it. Immediately. Mine was discovered because of an increased liver enzyme during a regular physical. A CT scan can "see" if there are tumours protruding from the gallbladder. Unfortunately gallbladder cancer is usually not discovered until surgery to remove gallstones or the gallbladder with its stones and often that is too late. As well, it's been my experience and that of the few others here in Canada who have/had this disease, that surgeons are reluctant to remove a tumour above a certain size and recommend chemo to reduce it. But if the patient can't tolerate the chemo, the tumour just grows and grows and spreads.

    There is a protocol for gallbladder cancer surgery as well that isn't widely known, at least here in Canada. Usually the news is, nothing we can do until ... or even more final than that. I did have surgery followed by chemo. But three other gallbladder cancer patients that I know of did not and they are gone. So don't accept the "nothing we can do" statement! You really do have to fight for treatment because it is not a common cancer and one that has poor treatment results. But several of us are still here, and we had the surgery. Another thing to watch for is seeding from the gallbladder tumour to other places in the body, especially the liver, peritoneum, omentum, pancreas.

    Thanks Sharon Lee for mentioning this.

    Cheryl

    "Nothing we can do" Statement
    Hi Cheryl,

    Very well said. Thank You!

    Take Care
    Lily
  • Lauren21
    Lauren21 Member Posts: 7
    Lily50 said:

    Lauren's Mom
    Hi Lauren,

    So glad that you found us! I'm so sorry that this terrible disease has come into your mother's and your lives. Your mom is fairly young and as long as she has been fairly healthy she will be able to battle this beast. It is a long journey with many turns in the road but with good doctors, hope and faith she will be okay.

    I had a very aggressive treatment plan of Gemzar and Cisiplatin. I went 4 days a week - 2 weeks on 1 week off for about 8 hours a day. I also had extra hydration given to me daily. I lost alot of weight, my hair, eyebrows and eyelashes. I ate small meals every couple of hours. Lean protein, vegetables, fruits and smoothies. Many people swear by juicing but after a few times I decided that smoothies were my best bet. Many people drink Ensure/Boost for the nutrition that they need. The only supplement that my oncologist allowed me to take was L-Glutamine. Many other supplements can interfere with the chemo treatment. Check with the oncologist before taking supplements. This disease needs to be approached with the whole body, mind and spirit philosophy. Exercise and meditation was very helpful to me. I no longer work as my career involved lots of travel and was very stressful. This disease changes many things in your life but sometimes for me I feel it was a blessing in disguise. Stress can be very hard on a person’s body and I now look at life quite differently.

    Where are you located at? Sometimes there are people in your immediate area that can be helpful with information. I'm also in the business of connecting people when it is possible.

    I generally don't speak with people via the phone but occasionally I will make an exception. Many people will take questions from their loved ones and post them for a response. Then they read the answers back and people are very comfortable with that. Many people like to know that they are alone in this battle. Let your mom know that she isn't alone and we are all here to help her. I do know as well as others how hard it is to find others with this disease, that it why we do this. I don't ever want anyone to feel as desperate as I did.

    You are a wonderful daughter and I can tell you love your mom very much. You will become her advocate in this battle.

    I will add your mom to my prayer list.
    Take Care
    Lily

    thank you Lily
    Lily,

    Mom has been relatively healthy until this point in her life. She went this morning to see a metabolic physician - he's a licensed medical doctor but also trained in natural & nutritional medicine. He gave her some supplements to start taking but told her that he would not make a full plan for her until he knew exactly which hemo drugs she'd be taking. We live close to Nashville, TN if you know of any survivors in the area. I hate to ask you to make an exception to your no phone policy, but the oncologist here in Nashville has left Mom with so very little hope. I don't think she has any specific questions (she doesn't even ask many of her own questions to the doctors), I think she just wantts to know that survivors are real. My sisters & I have told her about the discussion board & how so many are valiantly fighting the enemy but I wonder if she doesn't still doubt in her head that you exist.

    So you actually took chemo several days in a row? The oncologist here in Nashville is recommending gemcitabine (which I think is same as gemzar) & cisplatin but just one day week for two weeks & then off a week. She has an appt August 8th in TX with M D Anderson for a 2nd opinion.

    I'm glad you are an advocate for others & you are using your story to help strengthen & encourage others. If you'd consider talking with Mom, just once, I'd certainly appreciate it.

    -- Lauren
  • Sharon Lee
    Sharon Lee Member Posts: 4
    Lily50 said:

    Stomach Pain
    Hi Sharon,

    Thanks so much for sharing your thoughts. They ring so true for many of us. I too knew that surgery was my only hope and that was a major turning point for me. Even if I ended up with an unsuccessful surgery, what choice did I have? There was no choice. It had to be done. You and your husband felt the same way.

    The trauma of the extensive surgery that your husband had will be with him for awhile. His body has been beaten up very badly and needs time to rest and recover. Pain will become tolerable at some point but might always be with him. His pain medication could be adding the constipation issue. My body lets me know when I have done too much and the scar tissue that the surgery creates isn't fun. He probably has surgical clips in him that sometimes if you move just right; they let you know that they are there. It does get better, it just takes time.

    Sugars and fats are the enemy. His digestive track is different now and it becomes trial and error to see what works and what doesn't. I no longer eat 3 meals a day; I eat 6 meals a day (much smaller portions). It is easier on my stomach to do that. Sometimes I will eat more than I should and again my body reminds me of that.

    Hope this helps!
    Take Care
    Lily

    Thank you Lily and Maudsie
    Your comments and advice help so very much. I am going to get him to watch the sugar and fats. He is so skinny now. He is 6'2" and 149 lbs. He used to be 210 lbs. He gets discouraged because he still has pain and is not the man he used to be. Prior to his cancer diagnosis he was a very busy guy. He is a lawyer, played basketball several times a week, and had many many hobbies. Now he is in recovery and he is coming along albeit slowly. Having said all that, we are enormously thankful that he had the surgery because it gives him hope and he wants to see his kids become adults - they are 13, 17 and 19.
    Thank you both.
  • Lily50
    Lily50 Member Posts: 209

    Thank you Lily and Maudsie
    Your comments and advice help so very much. I am going to get him to watch the sugar and fats. He is so skinny now. He is 6'2" and 149 lbs. He used to be 210 lbs. He gets discouraged because he still has pain and is not the man he used to be. Prior to his cancer diagnosis he was a very busy guy. He is a lawyer, played basketball several times a week, and had many many hobbies. Now he is in recovery and he is coming along albeit slowly. Having said all that, we are enormously thankful that he had the surgery because it gives him hope and he wants to see his kids become adults - they are 13, 17 and 19.
    Thank you both.

    You are welcome!
    Hi Sharon,

    Let him know that he probably will never get back to the 210 lbs mark. He will gain some weight back but not all of it. Digestive issues will be with him forever. He will find a new norm for himself. It is easy to get discourged when he was used to being such a busy man. He will feel a little lost sometimes. I ran at warp speed also and it is quite an adjustment. Heck, I'm still adjusting. When I try to do things like I used to it bites me. Somedays I feel like such an old woman and then other days I feel pretty good. We all live such stressed out lives that it is no wonder that we became ill. I can understand the hope of seeing your children become adults. My daughter was 17 when I was diagnosed and at that time I just wanted to see her graduate from High School. This year I'm proud to say I will see her graduate from college. Five years ago I didn't even know if that was possible. By the grace of god, my great oncologist and great surgeon I'm still here to see everything. Everyday is a blessing.

    There are some great pod casts (workshops) on the CancerCare that you might want to check out.
    websitehttp://www.cancercare.org/connect_workshops#past_workshops

    Thanks for sharing
    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    Lauren21 said:

    thank you Lily
    Lily,

    Mom has been relatively healthy until this point in her life. She went this morning to see a metabolic physician - he's a licensed medical doctor but also trained in natural & nutritional medicine. He gave her some supplements to start taking but told her that he would not make a full plan for her until he knew exactly which hemo drugs she'd be taking. We live close to Nashville, TN if you know of any survivors in the area. I hate to ask you to make an exception to your no phone policy, but the oncologist here in Nashville has left Mom with so very little hope. I don't think she has any specific questions (she doesn't even ask many of her own questions to the doctors), I think she just wantts to know that survivors are real. My sisters & I have told her about the discussion board & how so many are valiantly fighting the enemy but I wonder if she doesn't still doubt in her head that you exist.

    So you actually took chemo several days in a row? The oncologist here in Nashville is recommending gemcitabine (which I think is same as gemzar) & cisplatin but just one day week for two weeks & then off a week. She has an appt August 8th in TX with M D Anderson for a 2nd opinion.

    I'm glad you are an advocate for others & you are using your story to help strengthen & encourage others. If you'd consider talking with Mom, just once, I'd certainly appreciate it.

    -- Lauren

    Lauren's Mom
    Hi Lauren,

    Sorry that I haven't posted in so long. I truly believe in Eastern and Western medicine. They both have their strong points.
    The closet survivor that I know of to you is Maudsie. She is 3 years out and lives in Chapel Hill NC. I'm on the west coast.
    Some oncologists will only spout statistics and give you little or no hope. If your mom isn't comfortable with her oncologist, she should get a second, third or even fourth opinion.

    Yes, I did have a very aggressive treatment for what seemed like days on end. Gemcitabine and Gemzar are the same things. That chemo cocktail is pretty standard protocol for this cancer. No one that I have ever spoken to has had the aggressive treatment that I was given.

    How did the appt at MD Anderson go? Some people have received treatments there that have posted on this forum.

    If you would like to email me at LGregg6293@Aol.Com and put ACS-CSN in the subject line we can discuss setting up a time and #'s so that your mom can speak with me if she would like. You have to remember that if she says no she doesn't want to talk with me, you have to respect her wishes. You and your sister will support her any way that is in your power but remember that ultimately it is her decision.

    Let me know how it is going.
    Take Care
    Lily
  • parthgovil
    parthgovil Member Posts: 5
    Gall bladder cancer
    Dear Lily,

    Yours was which type of gall cancer ie neuro endocrine variant or the normal one. My father has recently been diagnosed with the neuro endocrine variant (which doctors mention is the best we could have hoped for). The cancer has spread to liver, what the doctors are suggesting is something similar to your case ie first chemo and as tumor responds & shrinks in size, a surgery thereafter. Hoping for the best.

    Regards
  • Lily50
    Lily50 Member Posts: 209

    Gall bladder cancer
    Dear Lily,

    Yours was which type of gall cancer ie neuro endocrine variant or the normal one. My father has recently been diagnosed with the neuro endocrine variant (which doctors mention is the best we could have hoped for). The cancer has spread to liver, what the doctors are suggesting is something similar to your case ie first chemo and as tumor responds & shrinks in size, a surgery thereafter. Hoping for the best.

    Regards

    Type of Gallbladder Cancer
    Hi,

    So sorry to hear about your father. I really don't think that I was ever told what type it was. I was just told that it was very aggressive and needed to be treated very aggressively. Yes, your father's treatment plan sounds very similar to mine. Have they determined what chemo cocktail he will be receiving? This is a long hard journey and Hope & Faith will carry you through. I'm praying for your father and family.

    Take Care
    Lily
  • Lauren21
    Lauren21 Member Posts: 7
    Lily50 said:

    Lauren's Mom
    Hi Lauren,

    Sorry that I haven't posted in so long. I truly believe in Eastern and Western medicine. They both have their strong points.
    The closet survivor that I know of to you is Maudsie. She is 3 years out and lives in Chapel Hill NC. I'm on the west coast.
    Some oncologists will only spout statistics and give you little or no hope. If your mom isn't comfortable with her oncologist, she should get a second, third or even fourth opinion.

    Yes, I did have a very aggressive treatment for what seemed like days on end. Gemcitabine and Gemzar are the same things. That chemo cocktail is pretty standard protocol for this cancer. No one that I have ever spoken to has had the aggressive treatment that I was given.

    How did the appt at MD Anderson go? Some people have received treatments there that have posted on this forum.

    If you would like to email me at LGregg6293@Aol.Com and put ACS-CSN in the subject line we can discuss setting up a time and #'s so that your mom can speak with me if she would like. You have to remember that if she says no she doesn't want to talk with me, you have to respect her wishes. You and your sister will support her any way that is in your power but remember that ultimately it is her decision.

    Let me know how it is going.
    Take Care
    Lily

    Thank you Lily
    Lily,

    I will definitely email. Thanks for your response.

    The trip to MD Anderson was okay. They recommended Gem/Cis but also want to put her on Tarceva which is approved for pancreatic cancer and is only in early phase studies for gall bladder cancer. We are working on trying to get it at a reduced price since it is so expensive and her insurance won't pay for it since its not approved for GB cancer.

    She's had problems with the stint in her bile duct and then developed a kidney infection, so we have not started treatment yet. I'm getting a little antsy to get started.

    Thanks again . . .

    Lauren
  • jane0411
    jane0411 Member Posts: 2
    Lily50 said:

    Type of Gallbladder Cancer
    Hi,

    So sorry to hear about your father. I really don't think that I was ever told what type it was. I was just told that it was very aggressive and needed to be treated very aggressively. Yes, your father's treatment plan sounds very similar to mine. Have they determined what chemo cocktail he will be receiving? This is a long hard journey and Hope & Faith will carry you through. I'm praying for your father and family.

    Take Care
    Lily

    Mom's GB Cancer unique palliative question
    Hi all,
    I just found this discussion board today! We are new to GB cancer; my Mom is 85 and was diagnosed in mid-April with Stage 4. It has invaded the liver and some local lymph nodes. She had 7 infusions of Gemzar since June to no avail. The CT scan on July 23 showed the tumor had grown about 1-inch all around. The good news is that there are no other tumors found (on the scan)and the rest of her bloodwork is very good. All other organs are also functioning well. We are at the GI Cancer Center at Mass Gnl in Boston.
    She has lost alot of weight and has pains in her stomach area (we are pretty sure from gas build up) and lower back pain--both of which make her day to day life rotten. Her entire active life has changed and she only goes out of the house to Dr appts.

    Her GB Cancer is too advanced for surgery. The other alternative of 5 FU infusuion has only a 20% chance of helping her (and Gemzar was so debilitating that we don't think another chemo is worth it).

    The doctors said the most relief of pain would come from radiation to the tumor, but BIG BUT, they would need to do laparascopic surgery to insert "spacers" to push the intestines out of the way so they'd have a clear shot for the radiation. (It was explained that her particular anatomy would require this.) The radiation would be 5 days in a row after recovery fr the laparascopy. I've talked with an operating room nurse I know who never heard of such a thing. She consulted w/oncologists fr her hospital in NYC who also never heard of such an operation.
    So, I'm wondering if any of you are familiar with any of this? Also, laparascopy on an 85yr-old? Radiation and its SFX on someone that age?

    Thank you all for your honest sharing of your stories. It has helped enormously in getting perspective on this awful, disease.

    Jane
  • Lily50
    Lily50 Member Posts: 209
    Lauren21 said:

    Thank you Lily
    Lily,

    I will definitely email. Thanks for your response.

    The trip to MD Anderson was okay. They recommended Gem/Cis but also want to put her on Tarceva which is approved for pancreatic cancer and is only in early phase studies for gall bladder cancer. We are working on trying to get it at a reduced price since it is so expensive and her insurance won't pay for it since its not approved for GB cancer.

    She's had problems with the stint in her bile duct and then developed a kidney infection, so we have not started treatment yet. I'm getting a little antsy to get started.

    Thanks again . . .

    Lauren

    Lauren's Mom
    Hi Lauren,

    I will be checking my email.

    Okay is better than not good. At least you checked it out. It is important to get different opinions about treatment and then chose the one that your mom will be the most comfortable with and what will help her the most. Gallbladder Cancer is beginning to get some attention lately which is just a good thing. Insurance can sometimes be a nightmare.

    What type of problems is she having with the stint? I sure that you are antsy because time has become a top priority. Every day that goes by without treatment in your mind means that those nasty critters just become more prevalent. This is a disease that will teach you patience and perseverance.

    Take Care
    Lily
  • Lauren21
    Lauren21 Member Posts: 7
    Lily50 said:

    Lauren's Mom
    Hi Lauren,

    I will be checking my email.

    Okay is better than not good. At least you checked it out. It is important to get different opinions about treatment and then chose the one that your mom will be the most comfortable with and what will help her the most. Gallbladder Cancer is beginning to get some attention lately which is just a good thing. Insurance can sometimes be a nightmare.

    What type of problems is she having with the stint? I sure that you are antsy because time has become a top priority. Every day that goes by without treatment in your mind means that those nasty critters just become more prevalent. This is a disease that will teach you patience and perseverance.

    Take Care
    Lily

    My Mom
    Lily,

    I have emailed, so please let me know if you didn't get it.

    The stint was temporary and needed to be replaced - then the kidney infection. She is home now and we have hopes that chemo will start Wednesday. She sounds very weak and I've had to really stay on her about eating. She says she knows she needs to eat but she doesn't feel hungry and its just hard to make it go down.

    I just don't want her to give this up without a HUGE fight. I mean, 48 years old, NO WAY. I beg God every day not to take her away from me.

    Anyway, please let me know if you did not get the email. I know she is looking forward to hearing from you. I am keeping my fingers crossed about Wednesday and will let you know how it goes.

    All your prayers are welcomed. I cannot express my thanks enough.
    --Lauren
  • Lily50
    Lily50 Member Posts: 209
    Lauren21 said:

    My Mom
    Lily,

    I have emailed, so please let me know if you didn't get it.

    The stint was temporary and needed to be replaced - then the kidney infection. She is home now and we have hopes that chemo will start Wednesday. She sounds very weak and I've had to really stay on her about eating. She says she knows she needs to eat but she doesn't feel hungry and its just hard to make it go down.

    I just don't want her to give this up without a HUGE fight. I mean, 48 years old, NO WAY. I beg God every day not to take her away from me.

    Anyway, please let me know if you did not get the email. I know she is looking forward to hearing from you. I am keeping my fingers crossed about Wednesday and will let you know how it goes.

    All your prayers are welcomed. I cannot express my thanks enough.
    --Lauren

    Lauren's Mom
    Hi Lauren,

    Got your email and I'm looking forward to speaking with your mom.

    How long ago did she get the stint? Most of them need to be replaced. Your appetite is one of the first things to go with this disease.

    Forty-eight years old is so very young. It is a good thing that it was caught even though it came out of left field for you both. She will fight; everyone that comes to this board is looking for answers and is either in the midst of the fight themselves or are supporting a loved one with their fight. It is a great place to talk with others and share information.

    Praying for your mom and you.
    Take Care
    Lily