Gallbladder Cancer Stage 4

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Comments

  • Lily50
    Lily50 Member Posts: 209

    Similar experience
    Hi KJP,

    My name is Keith, and my wife was diagnosed with GBC in Feb of 2010 at the age of 44. She went through treatment with Gemcitabine and Cisplatin. Next they tried FOLFIRI and then Nexavar. All the treatments were ineffective. I found every doctor we talked to did not really offer anything to treat the disease. We had to make suggestions to get the treatment. Seems with this disease doctors assume a death sentence and do not spend anytime trying to find a treatment that might work. Unfortunately, my beautiful wife succumb to the disease on Nov. 5th 2010. I'm not trying to be negative, as I too believe a positive mental outlook is very important. If you would like more details about my wife's experience with the disease I would be glad to talk to you. Just send an email to keithg@summitsemi.com. I prefer not to post all the details about her journey on this site because hers was not a positive outcome, but I believe I do have useful information about the progression of the disease that could be useful to others, assuming one wants to know what happens as the disease progresses. I truly wish you all the best.

    Regards,

    Keith

    Keith's beautiful wife!
    Hi Keith,

    I'm so sorry for your loss. I can tell that you loved your wife very much and I'm sure that right now you feel somewhat lost. She is still with you and will be forever. Thanks for letting us know.
    The doctor's are just in the beginning stages of understanding how to treat this disease and there is a lot of trial and error going on. It is a war that will not be easily won. Please email me at LGregg6293@Aol.Com with the details of your wife's journey. I'm sure that some of the terrible situations that you experienced could be used to help make others aware of some of the pitfalls in their own journey.

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

    What next
    Hello,

    Thank you again, Lily, for your response. I am a bit confused right now and hope that maybe you or someone else can assist in some way.

    As I mentioned before, my mother was diagnosed with Stage IV gallbladder cancer. We were told at the time of the diagnosis that the cancer had spread to her liver and surrounding lymph nodes. When we first met with the doctor he informed us that there were several different chemo cocktails that could be used in attempts to treat the cancer. My mother was "assigned" a combination of Gemcitabine and Xeloda, which she took over two, two-week cycles. She was given one week "off" between each cycle and then at the end of the two cycles she had two weeks off. Next, she had a CT scan taken.

    This week we met with the doctor to go over the CT scan. He informed us that additional cancerous spots were found on the liver and possible, but not significant activity, occurred in the lymph nodes. Obviously, this was not the news we wanted to hear. Since this combination didn't work, I expected to hear the doctor offer another combination, but he brought up palliative care right away. When I asked about trying another combo he said it would likely be a a combo of an FU-5 drug and cisplatin; he described this combo as highly toxic, hard on the body, and that there was only a 10-15% chance it would be effective...and if it was effective only minimally. Overall, the feeling I got from him was to not try anymore chemo and instead continue living the highest quality of life without treatment.

    At the first appointment, he said there were options and sometimes there was trial and error involved. I know this is a difficult cancer to treat, but I feel like he's given up on my mom already. I'm wondering if this happened to anybody else, where one combo didn't work, but another did. Has anybody had to try different combinations before finding an effective one? If you anyone has been on cisplatin and a FU-5 combo, how did you feel? What were the side effects for you?

    If anyone has any input or advice to share, I would greatly appreciate it. Thank you again!

    Kjp's Mother
    Hello,

    Hopefully some of your confusion has passed and your mom is on the right road again.

    I sometimes don't understand why doctors can be so insensitive. I think that they have so many patients that they really don't remember what they have said to you on previous visits. Many doctors based on their experiences will sometimes offer the quality of life card and we really don't want to receive it. You were blind-sided once again. If there are options of different chemo's then insist that your mother try them. As long as she is willing to go the distance they should want to try and help her. I would take a 15% chance anyday over the alternative. This is an aggressive cancer and needs to be treated in an aggressive manner in order to be successful. Yes, it is true that the combo is very hard on a person but what other choice do you have? I would consider finding another oncologist who would be more compassionate and maybe has more experience with this disease.

    My first combo cocktail didn't work to well for me at first - Carboplatin and Gemzar.
    We changed it to Cisplatin and Gemzar and that worked for me. Everyone is different and the right combination of drugs need to be found. There are side effects that are different for everyone. If you are lucky the side effects can be minimal or they can be quite difficult.

    Please let us know how she is doing and keep in touch.

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

    Tina's Mom
    Hello Tina,

    What a great daughter you are to your mother for taking the step towards finding information to help your mother with this terrible disease. Thank goodness with all the negativity out there that you found this site. This thread has been going on for over a year and there are others that have also survived this terrible disease or are in the midst of the fight. We are all here for each other. Hope, faith, support, whatever one needs to fight the fight for their life. This is a terrible disease and there hasn't been alot of attention paid to it because statistically most people when they are diagnosed with it may be too late for curative purposes according to doctors. But I say there is only one who can make such a decision and he/she doesn't live in this world. If you have read other postings you will see that your mom's diagnosis is pretty much the same as others. Each individual is different but the general consensus is the same. Some of us have heard the dreaded "No Surgery" for this type of cancer. I too fell into that catagory but it wasn't acceptable to me and some others. We all had different situations but in the end a few of us did receive the surgery after we originally we told "No". It is very important to receive second opinions and to have the attitude that we could beat this.
    You mom is around the age of most of the patients that I speak to with a few exceptions.
    The chemo cocktail she will be receiving is the standard protocol at this point. Gemzar and one of the platin series seems to be what everyone is receiving. I started with Gemzar and Cryboplatin and then was switched to Gemzar and Cisiplatin. I now know that there is a Cisiplatin shortage currently. I had what was classified as very aggresive treatment. I had treatment daily for two weeks and then a week off for 11 months. It was tiresome. Hydration is a key, along with healthy eating, phyical exercise as tolerated. I will review my list and see if anyone has a suggestion for you regarding an oncologist that they have faith in. Everyone tolerates chemo differently and yes there are side effects. Fatigue is a big one, hair loss (can be a really big one - was for me), loss of appetite, and the list goes on. You can't approach the chemo with waiting for the side effects to kick in. You just need to address them as they happen. Mediation helps alot and yoga. Talk to us with your questions as you experience them with your mother and we will try and give you advice based on our own experiences.

    Take Care of mom and yourself.
    Lily

    First CT scan is good!!
    Hi Lily,
    My mom (and family) received great news that her chemo treatment is working after her first CT scan since her diagnosis! Before this news, she was ready to die but now she has turned a new leaf and ready to live again! Her determination to fight this disease can be seen as she’s eating and drinking and trying to gain the weight back! It’s amazing to see this change!
    I want to share this news with you because you have been a great support system for me since my mom’s diagnosis when I thought there was no light at the end. You provided me the strength to be able to tell my mom that she has to have faith and hope! Thank you for starting this blog or all of us!!!
    I’ll keep you posted as she continues with her treatments!!! Best Regards, Tina.
  • Lily50
    Lily50 Member Posts: 209
    newnewkb said:

    First CT scan is good!!
    Hi Lily,
    My mom (and family) received great news that her chemo treatment is working after her first CT scan since her diagnosis! Before this news, she was ready to die but now she has turned a new leaf and ready to live again! Her determination to fight this disease can be seen as she’s eating and drinking and trying to gain the weight back! It’s amazing to see this change!
    I want to share this news with you because you have been a great support system for me since my mom’s diagnosis when I thought there was no light at the end. You provided me the strength to be able to tell my mom that she has to have faith and hope! Thank you for starting this blog or all of us!!!
    I’ll keep you posted as she continues with her treatments!!! Best Regards, Tina.

    Tina's Mom GOOD CT Scan
    Hi Tina,

    That is wonderful news! I'm so happy for your Mom, you and your entire family. This disease needs to be treated with a positive mindset. It is such an uphill battle sometimes but you can't let it drag you down. Taking it day by day and hoping for no setbacks is all you can ask for.

    Thanks for sharing as others read these posts and even though they may not comment on them it is a ray of hope for others too.

    Keep us posted and tell her I wish her well.

    Take Care
    Lily
  • Miguel007
    Miguel007 Member Posts: 1
    Linda1949 said:

    Linda's Surgery
    Thank you Lily!

    Linda is coming home from the hospital this afternoon. I had to fly back to Texas already, but Linda knows I will be back in a flash when she needs me too. The Dr. wants her to come home with the PICC line they had to put in because her veins kept collapsing. She is concerned because of the care that needs to be given to it and she doesn't have an oncology appt for another 10 to 12 days. She meets with the Radiologist next Tuesday. Her spirits are high and now that we both purchased iPhones, we are texting back and forth, playing scrabble and just having a good time despite this disease. I appreciate both you and Cheryl's support. This board's existance certainly needs to be advertised by the surgeons and oncologists. Hope is what we all want, and I know Linda and I have found it here. Thanks for all you are doing to help others. Kathleen~

    Since spices are limited I'm
    Since spices are limited I'm hoping maybe someone on here with a similar problem can shed some light on this. I'm a seventeen year old college student, and though my diet is very healthy with the exception of a few things I'm working to eliminate gallbladder Stay away from fatty foods. I did have mine out. Lucky for me, I had just had my first child and my OB figured out what the issue was. I was diagnosed and had surgery within 2 weeks. My mom suffered for 5 years before they figured out what was wrong with her.

    Take care people
  • Lily50
    Lily50 Member Posts: 209
    Miguel007 said:

    Since spices are limited I'm
    Since spices are limited I'm hoping maybe someone on here with a similar problem can shed some light on this. I'm a seventeen year old college student, and though my diet is very healthy with the exception of a few things I'm working to eliminate gallbladder Stay away from fatty foods. I did have mine out. Lucky for me, I had just had my first child and my OB figured out what the issue was. I was diagnosed and had surgery within 2 weeks. My mom suffered for 5 years before they figured out what was wrong with her.

    Take care people

    Gallbladder
    Hello,

    Welcome to this discussion board. I am a little confused with your posting. Have you been diagnosed with gallbladder cancer or since you have had your gallbladder removed are there some concerns that you have? Is your mom still with you or did she have a cancer diagnosis?

    Congratulations on the birth of your child. It is a very blessed event.

    What kind of information are you looking for? We will be happy to help you.

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

    First CT scan is good!!
    Hi Lily,
    My mom (and family) received great news that her chemo treatment is working after her first CT scan since her diagnosis! Before this news, she was ready to die but now she has turned a new leaf and ready to live again! Her determination to fight this disease can be seen as she’s eating and drinking and trying to gain the weight back! It’s amazing to see this change!
    I want to share this news with you because you have been a great support system for me since my mom’s diagnosis when I thought there was no light at the end. You provided me the strength to be able to tell my mom that she has to have faith and hope! Thank you for starting this blog or all of us!!!
    I’ll keep you posted as she continues with her treatments!!! Best Regards, Tina.

    Yay!
    Excellent news Tina! I am so happy that this has given your mother renewed strength for the fight! It's so important to hang in and not give in.
    Best to you both,

    Maudsie
  • tigressdana
    tigressdana Member Posts: 8
    Lily50 said:

    Best Friend's Mom
    Hello Elizabeth,

    You are such a good friend to try and help your friend thru such terrible circumstances.
    Those books than Jan recommended are wonderful. Your friend is so young to have to deal with something like this. I lost my father at the age of 21 and it was very difficult. There had to be a reason why they transferred her to hospice, do you know what that is? Since she was receiving treatment with 12 different strains her body was being attacked very aggressively. There is such a thing as chemo poisioning where she was given too much. When they are doing aggressive treatment that is a possibility. I spent 5 days in the hospital when they did that to me. Oncologists sometimes won't admit it but it can happen. My oncologist admitted it to me and he stated that on numerous occasions that he took me to the edge and back.

    I don't believe there is such a thing as false hope. Without hope and faith there is nothing. But Jan is right that you have to come to terms with the possibility of death, as this is what life is all about. No matter how hard it may be to even discuss it. I'm sure that since you stated that she was such a vibrant women to see her this way can be quite unbearable for her daughter. Counseling is always as good idea, as sometime therapy can give you clarification on certain issues. I'm sure that she is probably heavily medicated at this time and cannot convey to you or her daughter what she would like to do. It is just an awful situation and for you to be there for your friend means a lot.

    At this time are you aware of everything medically that has happened to her? Do not be afraid to ask questions and research information. Someone needs to be her advocate! If she doesn't have a spouse, who knows what her wishes are? These are things that people don't want to discuss or until they have to because they are in a life threating situation do they discuss it. We all like to think that we will be around forever.

    Let us know how it is going.
    I'll be praying for her and her family.
    Take Care
    Lily

    My grandma was diagnosed with gallbladder cancer
    Hello All:

    On 12/29/2010 my grandma was diagnosed with gallbladder cancer. We got her in at The Ohio State University James Cancer center where they performed a needle biopsy to confirm that it was gallbladder cancer and that the cancer was now in her liver. The gallbladder has attached to the liver and there is (from what I have been told) at least one large tumor in the liver. The surgeon said that he would not be able to remove the gallbladder or just a part of the liver. The doctor said he would say she has about 3-6 months left and that it would probably progress very quickly.
    My grandma is a very stubborn woman (which can be bad...she says she doesn't want treatment but could also be good...if she would start treatment I think her stubborness would help to pull her through). She does not know the time frame yet. (We are debating on whether to tell her or not...some of us want to some of us don't.)
    We go to see the doctor of internal medcine to see if he reccommends any treatments or trials (my grandma is at least willing to go to see what he says) this Monday (Jan 31, 2010).
    Any suggestions about questions we should ask or anything? At this point any suggestions or examples or words of wisdom and hope would be beneficial to us.
    I was also wonderng if anyone had ever heard of someone who had gallbladder cancer that has spread to the liver to have their gallbladder and liver removed and have a liver transplant? (This was just a thought I had if any of her relatives were a match.)

    Readig all of your posts has given me a glimmer of hope. My family and I are thinking and praying for all of you!

    Thanks!

    Dana
  • Lily50
    Lily50 Member Posts: 209

    My grandma was diagnosed with gallbladder cancer
    Hello All:

    On 12/29/2010 my grandma was diagnosed with gallbladder cancer. We got her in at The Ohio State University James Cancer center where they performed a needle biopsy to confirm that it was gallbladder cancer and that the cancer was now in her liver. The gallbladder has attached to the liver and there is (from what I have been told) at least one large tumor in the liver. The surgeon said that he would not be able to remove the gallbladder or just a part of the liver. The doctor said he would say she has about 3-6 months left and that it would probably progress very quickly.
    My grandma is a very stubborn woman (which can be bad...she says she doesn't want treatment but could also be good...if she would start treatment I think her stubborness would help to pull her through). She does not know the time frame yet. (We are debating on whether to tell her or not...some of us want to some of us don't.)
    We go to see the doctor of internal medcine to see if he reccommends any treatments or trials (my grandma is at least willing to go to see what he says) this Monday (Jan 31, 2010).
    Any suggestions about questions we should ask or anything? At this point any suggestions or examples or words of wisdom and hope would be beneficial to us.
    I was also wonderng if anyone had ever heard of someone who had gallbladder cancer that has spread to the liver to have their gallbladder and liver removed and have a liver transplant? (This was just a thought I had if any of her relatives were a match.)

    Readig all of your posts has given me a glimmer of hope. My family and I are thinking and praying for all of you!

    Thanks!

    Dana

    Dana's Grandmother
    Hi Dana,

    Welcome to this forum. I'm so glad you found us. I'm Lily and I am a gallbladder cancer survivor. I was diagnosed in 2005 and I too was given a short time frame to live. I had gallbladder cancer with tumors in my liver, stomach,intestinal track and lymph nodes. I had what is called a Extended (radical) cholecystectomy. They removed my gallbladder and a wedge shape section of my liver along lots of other stuff. It wasn't an easy surgery but I made it. I did chemo before and after my surgery. Since the liver is one organ that can regenerate itself unless the whole liver is very compromised they won't usually do a transplant. But I could be wrong. My surgeon was Dr. Howard Reber at UCLA in California. He is part of the Jonnson Cancer Center and the Pfleger Liver Institute.

    Don't be discourged about the timeframes as these stastics are old and outdated. Anything is possible. You should always get a second, third even fourth opinion if necessary. Don't give up to quickly. Has she had a PET Scan, CT Scan, MRI and what were the results?

    Being stubborn is part of whom your grandma is and it could work to her advantage. The fact that she is willing to go see what the the Internal Medicine doctor has to say means that she isn't really willing to give up yet. Even though she says she doesn't want treatment in her heart she wants to fight. I think that honesty is the best policy so that she can have a clear picture of what she is going up against. Sometimes other doctors may let something slip unintentionally when they think the patient is already aware of the situation. You really don't want her feel that she has been blindsided. She has to be her own advocate for her healthcare and if she is unable to do that then someone needs to be her advocate.

    Make sure that you ask any questions that you feel could be important. Write them down before going to the doctor. It helps you to remember to ask. Such as if she was to try chemo and/or radiation how many cycles would it entail? What chemo medication would she be receiving? From the blood tests what are the tumor markers? Make sure you get copies of any tests that she had had and start building a medical profile for her if you continue to go see other doctors. Not only does she need to find a doctor that she is happy with but also someone who has experience with this type of cancer.

    Good luck to her tomorrow and let us know how it goes. Ask us anything and we will try to help.

    Take Care
    Lily
  • tigressdana
    tigressdana Member Posts: 8
    Lily50 said:

    Dana's Grandmother
    Hi Dana,

    Welcome to this forum. I'm so glad you found us. I'm Lily and I am a gallbladder cancer survivor. I was diagnosed in 2005 and I too was given a short time frame to live. I had gallbladder cancer with tumors in my liver, stomach,intestinal track and lymph nodes. I had what is called a Extended (radical) cholecystectomy. They removed my gallbladder and a wedge shape section of my liver along lots of other stuff. It wasn't an easy surgery but I made it. I did chemo before and after my surgery. Since the liver is one organ that can regenerate itself unless the whole liver is very compromised they won't usually do a transplant. But I could be wrong. My surgeon was Dr. Howard Reber at UCLA in California. He is part of the Jonnson Cancer Center and the Pfleger Liver Institute.

    Don't be discourged about the timeframes as these stastics are old and outdated. Anything is possible. You should always get a second, third even fourth opinion if necessary. Don't give up to quickly. Has she had a PET Scan, CT Scan, MRI and what were the results?

    Being stubborn is part of whom your grandma is and it could work to her advantage. The fact that she is willing to go see what the the Internal Medicine doctor has to say means that she isn't really willing to give up yet. Even though she says she doesn't want treatment in her heart she wants to fight. I think that honesty is the best policy so that she can have a clear picture of what she is going up against. Sometimes other doctors may let something slip unintentionally when they think the patient is already aware of the situation. You really don't want her feel that she has been blindsided. She has to be her own advocate for her healthcare and if she is unable to do that then someone needs to be her advocate.

    Make sure that you ask any questions that you feel could be important. Write them down before going to the doctor. It helps you to remember to ask. Such as if she was to try chemo and/or radiation how many cycles would it entail? What chemo medication would she be receiving? From the blood tests what are the tumor markers? Make sure you get copies of any tests that she had had and start building a medical profile for her if you continue to go see other doctors. Not only does she need to find a doctor that she is happy with but also someone who has experience with this type of cancer.

    Good luck to her tomorrow and let us know how it goes. Ask us anything and we will try to help.

    Take Care
    Lily

    Thanks Lily
    Lily,

    Thanks for responding. How are you doing? Were you in much pain prior to your diagnosis?
    My grandma has had a nuclear scan and I believe a CT scan and possibly an MRI. As well as blood tests and the needle biopsy.

    My aunt and I have some questions written down but not all that you suggested. I will include those on my list of questions.

    I will let you know what we find out. Thanks again so much!

    Dana
  • Lily50
    Lily50 Member Posts: 209

    Thanks Lily
    Lily,

    Thanks for responding. How are you doing? Were you in much pain prior to your diagnosis?
    My grandma has had a nuclear scan and I believe a CT scan and possibly an MRI. As well as blood tests and the needle biopsy.

    My aunt and I have some questions written down but not all that you suggested. I will include those on my list of questions.

    I will let you know what we find out. Thanks again so much!

    Dana

    Dana's grandma
    Hi Dana,

    I'm doing quite well. I am going for my 6 month CT Scan tomorrow and it will be a good one. It is a neccessary evil for me and even though I would prefer not to go I have to.
    My oncologist is a little overprotective and he just wants to make sure that if anything is going on that we catch it right away. Better safe than sorry I always say.

    I wasn't in much pain prior to my diagnosis. My symptoms in the beginning were just bothersome. I had a tendency to ignore things as I was so busy. When I received my diagnosis I felt like it was coming out of left field. But I tackled it head on and just kept going.

    I'm glad that I could help with your questions.
    Good Luck
    Take Care
    Lily
  • maudsie
    maudsie Member Posts: 54
    Lily50 said:

    Dana's grandma
    Hi Dana,

    I'm doing quite well. I am going for my 6 month CT Scan tomorrow and it will be a good one. It is a neccessary evil for me and even though I would prefer not to go I have to.
    My oncologist is a little overprotective and he just wants to make sure that if anything is going on that we catch it right away. Better safe than sorry I always say.

    I wasn't in much pain prior to my diagnosis. My symptoms in the beginning were just bothersome. I had a tendency to ignore things as I was so busy. When I received my diagnosis I felt like it was coming out of left field. But I tackled it head on and just kept going.

    I'm glad that I could help with your questions.
    Good Luck
    Take Care
    Lily

    CT today
    Lily -- good luck today! please let me/us know how your scan goes!!!!
    big hug from me, Maudsie
  • maudsie
    maudsie Member Posts: 54

    My grandma was diagnosed with gallbladder cancer
    Hello All:

    On 12/29/2010 my grandma was diagnosed with gallbladder cancer. We got her in at The Ohio State University James Cancer center where they performed a needle biopsy to confirm that it was gallbladder cancer and that the cancer was now in her liver. The gallbladder has attached to the liver and there is (from what I have been told) at least one large tumor in the liver. The surgeon said that he would not be able to remove the gallbladder or just a part of the liver. The doctor said he would say she has about 3-6 months left and that it would probably progress very quickly.
    My grandma is a very stubborn woman (which can be bad...she says she doesn't want treatment but could also be good...if she would start treatment I think her stubborness would help to pull her through). She does not know the time frame yet. (We are debating on whether to tell her or not...some of us want to some of us don't.)
    We go to see the doctor of internal medcine to see if he reccommends any treatments or trials (my grandma is at least willing to go to see what he says) this Monday (Jan 31, 2010).
    Any suggestions about questions we should ask or anything? At this point any suggestions or examples or words of wisdom and hope would be beneficial to us.
    I was also wonderng if anyone had ever heard of someone who had gallbladder cancer that has spread to the liver to have their gallbladder and liver removed and have a liver transplant? (This was just a thought I had if any of her relatives were a match.)

    Readig all of your posts has given me a glimmer of hope. My family and I are thinking and praying for all of you!

    Thanks!

    Dana

    Hi Dana
    Hi Dana, I just want to add to Lily's comments. I was diagnosed with GBC 2-1/2 years ago, after I had my gallbladder removed for some vague gassy pains and some vomiting. Surgery is the first and best option for dealing with GBC when it is possible. So usually the next step in a case like your grandmother's is, if she is in good shape physically otherwise, to have a surgery to remove her gallbladder, some surrounding lymph, and a large wedge of liver that sits near or touches the gallbladder. (I did this and had the cancer seen on my liver removed....we hope that is all). If tests such as CT and PET scans show that the liver is more involved than what can be surgically removed, as seems to be the case with your grandmother, that does not mean that this type of surgery would not be an option down the road. Often chemo can shrink tumors enough to make surgery once again an option. All cases are different and everyone is different. (by the way, liver transplantation is probably NOT an option). A good conference with an experienced oncologist would be in line. And I agree with Lily, it would be good if your grandmother were aware of her situation so she can make informed decisions and choices, what to do, and what not to do. Good luck! Prayers your way.....

    Maudsie
  • seli
    seli Member Posts: 5
    maudsie said:

    Hi Dana
    Hi Dana, I just want to add to Lily's comments. I was diagnosed with GBC 2-1/2 years ago, after I had my gallbladder removed for some vague gassy pains and some vomiting. Surgery is the first and best option for dealing with GBC when it is possible. So usually the next step in a case like your grandmother's is, if she is in good shape physically otherwise, to have a surgery to remove her gallbladder, some surrounding lymph, and a large wedge of liver that sits near or touches the gallbladder. (I did this and had the cancer seen on my liver removed....we hope that is all). If tests such as CT and PET scans show that the liver is more involved than what can be surgically removed, as seems to be the case with your grandmother, that does not mean that this type of surgery would not be an option down the road. Often chemo can shrink tumors enough to make surgery once again an option. All cases are different and everyone is different. (by the way, liver transplantation is probably NOT an option). A good conference with an experienced oncologist would be in line. And I agree with Lily, it would be good if your grandmother were aware of her situation so she can make informed decisions and choices, what to do, and what not to do. Good luck! Prayers your way.....

    Maudsie

    My mother has been diagnose with stage lV GBC
    Hi

    I'm clueless & I'm so happy to find this web with all these wonderful survivor's stories. My mother is 59yrs old & has been been diagnosed with gallbladder cancer few weeks ago. She was feeling pain & when she went to the hospital, the doctor told her, "they have to remove her gallbladder ASAP & they did. That's when they discover the cancer. Her cancer stage is lV and Thanks to God, it hasn't spread to anyone of her organs yet. She'll be back to U.S. on Feb 7th, 2011 and she will either be in Cincinnati OH or Atlanta GA, & I'm looking for any survivors who had recieved the treatment either in Cincinnati or Atlanta area. We would like to find her the right place & find the right doctor,'cause Once she arrives, We don't want to waist any time. We want her to start with the treatment ASAP. If it's possible it'll be great if she can get the threatment in either one of those 2 cities(cincinnati or Atlanta); However, as long as it's anywhere in U.S.,I'm up for all help I can get. Please let me know, anyone. My faith is stronger than ever & I'm not ready to loose it. I just hope my mother has as much faith & hope I have or even more, 'cause she needs it more than me to fight & win this scary disease.

    Thanks
    Seli
  • maudsie
    maudsie Member Posts: 54
    seli said:

    My mother has been diagnose with stage lV GBC
    Hi

    I'm clueless & I'm so happy to find this web with all these wonderful survivor's stories. My mother is 59yrs old & has been been diagnosed with gallbladder cancer few weeks ago. She was feeling pain & when she went to the hospital, the doctor told her, "they have to remove her gallbladder ASAP & they did. That's when they discover the cancer. Her cancer stage is lV and Thanks to God, it hasn't spread to anyone of her organs yet. She'll be back to U.S. on Feb 7th, 2011 and she will either be in Cincinnati OH or Atlanta GA, & I'm looking for any survivors who had recieved the treatment either in Cincinnati or Atlanta area. We would like to find her the right place & find the right doctor,'cause Once she arrives, We don't want to waist any time. We want her to start with the treatment ASAP. If it's possible it'll be great if she can get the threatment in either one of those 2 cities(cincinnati or Atlanta); However, as long as it's anywhere in U.S.,I'm up for all help I can get. Please let me know, anyone. My faith is stronger than ever & I'm not ready to loose it. I just hope my mother has as much faith & hope I have or even more, 'cause she needs it more than me to fight & win this scary disease.

    Thanks
    Seli

    Seli's mom
    Hi Seli -- I just have time for a brief note, and I want to say that it is good that your mother will be in one of these two large cities, as both have top-rate cancer centers. I agree, your mother should be looked at as soon as possible, and be evaluated for further treatment which may include surgery, chemo, radiation, or all three, depending on the stage and spread, if any, of her cancer. Stage IV generally means that there is involvement elsewhere, somewhere outside of the gallbladder itself. Research on the internet for cancer hospitals in these areas, Cincinnati and Atlanta. I know that Atlanta especially has MANY options, but she can receive great care either place. It is great that you are getting a head start on this, your mother is lucky to have such good support!
    Maudsie
  • Lily50
    Lily50 Member Posts: 209
    seli said:

    My mother has been diagnose with stage lV GBC
    Hi

    I'm clueless & I'm so happy to find this web with all these wonderful survivor's stories. My mother is 59yrs old & has been been diagnosed with gallbladder cancer few weeks ago. She was feeling pain & when she went to the hospital, the doctor told her, "they have to remove her gallbladder ASAP & they did. That's when they discover the cancer. Her cancer stage is lV and Thanks to God, it hasn't spread to anyone of her organs yet. She'll be back to U.S. on Feb 7th, 2011 and she will either be in Cincinnati OH or Atlanta GA, & I'm looking for any survivors who had recieved the treatment either in Cincinnati or Atlanta area. We would like to find her the right place & find the right doctor,'cause Once she arrives, We don't want to waist any time. We want her to start with the treatment ASAP. If it's possible it'll be great if she can get the threatment in either one of those 2 cities(cincinnati or Atlanta); However, as long as it's anywhere in U.S.,I'm up for all help I can get. Please let me know, anyone. My faith is stronger than ever & I'm not ready to loose it. I just hope my mother has as much faith & hope I have or even more, 'cause she needs it more than me to fight & win this scary disease.

    Thanks
    Seli

    Seli's Mother
    Hi Seli,

    Welcome to this forum. We are glad that you found us too. Your mother is a very young women and she can beat this disease. It is a long journey but Hope and Faith will carry you thru. It is very common for this disease to be diagnosed once gallbladder surgery has been done. I agree with what Maudsie stated that when it is Stage 4 other organs are almost always involved. Your Mom should be home tomorrow and you can then expend your energies on finding her a good team of doctors. Whether she will be in Cincinnati or Atlanta there are good facilities in both of those areas. Do plenty of research and make sure that your oncologist has had experience with this disease. Time is of the essence and getting her treatment started right away is paramount. You will have to have patience because sometimes things progress slowly until you find the right doctors. Always get a 2nd,3rd even a fourth opinion if neccessary. The doctors and treatment that you select may be the most important thing that your mom has ever done. She has to be comfortable with the doctors that are walking by her side in this journey. Hope and Faith are very important as you all walk this dark journey. There is HOPE for us all! Ask us any questions you want when you are getting things set up for her. Don't believe all the negatative information that you read on the Internet as it is pretty outdated.
    Keep talking to us we will help if we can.
    Take Care
    Lily
  • seli
    seli Member Posts: 5
    Lily50 said:

    Seli's Mother
    Hi Seli,

    Welcome to this forum. We are glad that you found us too. Your mother is a very young women and she can beat this disease. It is a long journey but Hope and Faith will carry you thru. It is very common for this disease to be diagnosed once gallbladder surgery has been done. I agree with what Maudsie stated that when it is Stage 4 other organs are almost always involved. Your Mom should be home tomorrow and you can then expend your energies on finding her a good team of doctors. Whether she will be in Cincinnati or Atlanta there are good facilities in both of those areas. Do plenty of research and make sure that your oncologist has had experience with this disease. Time is of the essence and getting her treatment started right away is paramount. You will have to have patience because sometimes things progress slowly until you find the right doctors. Always get a 2nd,3rd even a fourth opinion if neccessary. The doctors and treatment that you select may be the most important thing that your mom has ever done. She has to be comfortable with the doctors that are walking by her side in this journey. Hope and Faith are very important as you all walk this dark journey. There is HOPE for us all! Ask us any questions you want when you are getting things set up for her. Don't believe all the negatative information that you read on the Internet as it is pretty outdated.
    Keep talking to us we will help if we can.
    Take Care
    Lily

    Hi Lily50 & Maudsie
    Thank you so much for all the hopefull, positive comfort & ideas you are giving me. It means a lot. It's so great to connect with such amazing survivors like you too. It's giving me so much hope. As I was waiting for my mother arrival I've been login in to this website to keep my hopes with me. I believe in God more than anything 'cause he's the only one who can do anything that's impossible to human. He can do it all. I also believe in miracle & I'm praying everyday that my mom is going to have her second miracle in life. She already had her first miracle when she survivor from 3rd degree burn in 2003 & I'm hoping her second miracle will be to beat this scary disease.
    Lilly50 I was checking my email this evening & while I was responding for your email, I got an expected call from Rome saying My mother's surgery opened while she was in the plane & the flight had to leave her in Rome to get that fixed. I Thank you kindly for your email. They say she's in good hand. She was very weak 'cause of not being able to eat anything & she was getting iv to give her a strength for the 18hrs that she had to be in the plane. I always say things happen for a good reason. May God wanted her to get more iv before she gets here, may be that's why this happened so For now I have no idea when exactly my mom is going to be here in U.S. but I'm hoping in the next day or so. I'll know tomorrow for sure. Please keep her in your prayers. & I'll let you & Maudsie her situation once I know something & all the status once she arrives here. Thanks a lot for all the support & hope.

    I'm so proud of all of you.
    Seli
  • Lily50
    Lily50 Member Posts: 209
    seli said:

    Hi Lily50 & Maudsie
    Thank you so much for all the hopefull, positive comfort & ideas you are giving me. It means a lot. It's so great to connect with such amazing survivors like you too. It's giving me so much hope. As I was waiting for my mother arrival I've been login in to this website to keep my hopes with me. I believe in God more than anything 'cause he's the only one who can do anything that's impossible to human. He can do it all. I also believe in miracle & I'm praying everyday that my mom is going to have her second miracle in life. She already had her first miracle when she survivor from 3rd degree burn in 2003 & I'm hoping her second miracle will be to beat this scary disease.
    Lilly50 I was checking my email this evening & while I was responding for your email, I got an expected call from Rome saying My mother's surgery opened while she was in the plane & the flight had to leave her in Rome to get that fixed. I Thank you kindly for your email. They say she's in good hand. She was very weak 'cause of not being able to eat anything & she was getting iv to give her a strength for the 18hrs that she had to be in the plane. I always say things happen for a good reason. May God wanted her to get more iv before she gets here, may be that's why this happened so For now I have no idea when exactly my mom is going to be here in U.S. but I'm hoping in the next day or so. I'll know tomorrow for sure. Please keep her in your prayers. & I'll let you & Maudsie her situation once I know something & all the status once she arrives here. Thanks a lot for all the support & hope.

    I'm so proud of all of you.
    Seli

    Seli's Mom
    Hi Seli,

    You have to have Hope and Faith to battle this evil monster called cancer. I have prayed for God's healing hands to touch your mother and everyone who is battling this disease.

    I am a firm beliver that everything happens for a reason and maybe as you said that she wasn't in good enough shape to endure that long flight. I had only a two hour flight a week after my surgery and it was tough. Maybe her staying in Rome and being taken care of for a little while longer will just be beneficial to her recovery.

    Let us know how everything is going once you get her home.

    My prayers are with your mother as she makes this long journey home.

    Take Care
    Lily
  • tigressdana
    tigressdana Member Posts: 8
    Lily50 said:

    Dana's grandma
    Hi Dana,

    I'm doing quite well. I am going for my 6 month CT Scan tomorrow and it will be a good one. It is a neccessary evil for me and even though I would prefer not to go I have to.
    My oncologist is a little overprotective and he just wants to make sure that if anything is going on that we catch it right away. Better safe than sorry I always say.

    I wasn't in much pain prior to my diagnosis. My symptoms in the beginning were just bothersome. I had a tendency to ignore things as I was so busy. When I received my diagnosis I felt like it was coming out of left field. But I tackled it head on and just kept going.

    I'm glad that I could help with your questions.
    Good Luck
    Take Care
    Lily

    Hey Lily
    Hey Lily,

    Sorry it's taken me so long to respond! It's been a lil crazy around here!
    First off how did your CT scan go?? And I think them being overprotective is much better than the opposite of that :) I hope you are feeling great! Have you stopped chemo treatments ?
    My grandma starts her treatments tomorrow morning (Friday 2/11/11). The doctor said surgery wasn't an option because there were so many spots on her liver. He said he hopes the chemo will give her a year or so. He said he has heard of it lengthening lives for 2-3 years but I think, the way he talked hes just going for a year now. He said the chemo is just to attempt to slow the spread of it. He said she will be on it for the rest of her life, or as long as she can handle it (if it would make her sick), or until it stops working. I just got off the phone with her and she said she wasn't really nervous. Hopefully she doesn't have a bad reaction and won't be sick to her stomach.
    She has seemed to be complaining more of high abdominal pain but she said its more or less just annoying.
    I hope all is well with you. Thanks for everything!

    Dana
  • tigressdana
    tigressdana Member Posts: 8
    maudsie said:

    Hi Dana
    Hi Dana, I just want to add to Lily's comments. I was diagnosed with GBC 2-1/2 years ago, after I had my gallbladder removed for some vague gassy pains and some vomiting. Surgery is the first and best option for dealing with GBC when it is possible. So usually the next step in a case like your grandmother's is, if she is in good shape physically otherwise, to have a surgery to remove her gallbladder, some surrounding lymph, and a large wedge of liver that sits near or touches the gallbladder. (I did this and had the cancer seen on my liver removed....we hope that is all). If tests such as CT and PET scans show that the liver is more involved than what can be surgically removed, as seems to be the case with your grandmother, that does not mean that this type of surgery would not be an option down the road. Often chemo can shrink tumors enough to make surgery once again an option. All cases are different and everyone is different. (by the way, liver transplantation is probably NOT an option). A good conference with an experienced oncologist would be in line. And I agree with Lily, it would be good if your grandmother were aware of her situation so she can make informed decisions and choices, what to do, and what not to do. Good luck! Prayers your way.....

    Maudsie

    Hey Maudsie
    Maudsie,

    Thanks for your support! How are you doing/feeling?

    The way the dr talked he doesn't think surgery will ever be an option because there are too many spots on her liver (I suppose there could always be a chance that the chemo might shrink them but I doubt it just the way he talked.)
    He said the chemo wasnt going to be very aggresive just enough to attempt to slow the groth of the cancer to give her a year or so. As for telling her, she was there when he said that but she doesn't understand alot of medical things and has dementia which isn't horrible, but her short term memory isn't very good. The dr. made it clear that she would be on chemo for the rest of her life (or until it wasn't working or she couldn't handle it anymore) she after the appt she said he never said that and we must have heard him wrong. It's things like that. I'm actually surprised she agreed to the chemo...but she said tonight that she "didn't really have a choice." Although we, her family and the dr., did tell her that was one of her options. She didn't ask how long she would live without it and the dr. didn't bring that up.
    She has her first treatment tomorrow so hopefully she handles it well and doesn't get sick. I'm sure she will be more tired and weak but hopefully that will be the extent of it.
    Do you mind me asking what age you were when diagnosed? (I understand if you would rather not say.)
    She is going to be 77 and up until the last couple of years noone could guess her age...but shes been showing it lately.

    Thanks for everything!

    Dana