gallbladder cancer stage 4

bjs
bjs Member Posts: 23
edited April 2011 in Rare and Other Cancers #1
I am a 65 year old woman recently diagnosed with metastic gallbladder cancer. Towards the end of February this year I began to have symtoms including pain in my gallbladder area. My doctor agreed with me that i needed to have my gallbladder removed as I had had stones for many years.However, I became very sick over a weekend and developed jaundice. My doctor ordered a CT scan which showed a blockage of my bile duct. the next day I entered the hopital and had an endoscopy to see the blockage. A stent was installed and over the next few days my juandice and pain rapidly decreased. I had another endoscopy to do an ultrasound which showed a small tumor. At that time, the doctors believed that I had bile duct cancer and scheduled a whipple the following week. When my surgeon began the operation, he discovered that the lymph nodes were involved in a relatively small area but it was too much to attempt the whipple. He did remove my gallbladder and a lymph node. Post surgery, it was discovered that my cancer originated in the gallbladder.
I began daily chemo and six weeks of radiation this week. The radiation machine circles my body to hit the cancer from many different angles and to minimize the effects on my healthy organs. I take 1500 mgs. of Xeloda each morning and evening seven days a week during the radiation. This treatment will be followed by a month off and then another chemo with a different drug.
As I am sure is true with everyone, this was a total shock to me and my family and it is hard to absorb all of the information. It is also difficult because I have no real tumor that I can see on a scan. I guess that I am fortunate that the area is small. I am happy to find this group to share information and support.

Comments

  • westie66
    westie66 Member Posts: 642
    #2
    Gallbladder Cancer Stage 4
    Hi bjs: Welcome to the gallbladder cancer discussion group. You'll see other sites related to gallbladder cancer as well (see gallbladder cancer 2011). I have much the same history as you describe: diagnosed in October 2009 but no gallbladder pain - just an elevated liver enzyme level, surgeries April 15 and 16 (see my blog to see why) which removed my gallbladder, its tumour that had protruded through the wall and into the liver, and removal of part of my liver. Chemo (cisplatin and gemitibine - also known as Gemzar) September-January 2011. No radiation as that would compromise my liver. My lymph nodes have not been tested for cancer but I do have at least 6 nodules of seeded cancer on my peritoneum. Recent CTs and MRIs show no other organ involvement. I am not eligible for surgery that involves removal of part of the peritoneum at this time (too old? too risky?) but I will be starting more chemo in May (FOLFOX - 5FU, oxiciplatin, etc.). I am from Ontario, Canada. You'll see several others on these discussion boards - Lily50, radicaltruth (whose husband has gallbladder cancer), and Maudsie.
    Cheryl
  • Lily50
    Lily50 Member Posts: 209
    #3
    Gallbladder Cancer Stage 4
    Hi Bjs

    I'm Lily and a 5 year survivor of GBC. I'm so sorry that you have received this diagnosis. Any cancer diagnosis is terrible and to fall into the rare catagory with us isn't much fun! I can't believe that you had stones for many years and didn't have your gallbladder removed earlier. The gallbladder is a tricky little organ that has potential to cause major havoc in ones life. You are very lucky that you received treatment right away at the hospital. A lot of people have stents installed to get rid of the blockage.
    I'm sorry that the Whipple procedure didn't work out for you, but at least they were able to determine that the cancer originated in the gallbladder.
    Many people have radiation and chemo at the same time. A few of us such as Cheryl and myself couldn't have radiation as our livers were compromised. Xeloda is one of the chemo drugs that others have taken. My cocktail was Gemzar and Cisiplatin.

    This GBC is very sneaky and will keep you on your toes. Shock is an understatement. Some people refer to getting cancer is like getting mugged. You aren't prepared for it, it comes out of nowhere, it is painful, and your whole life is turned upside down. That pretty much says it all.
    Be careful what you read on the Internet as it can be dismal at best. Some of the information is very outdated.
    Yes, you are fortunate that the area is small and hopefully the radiation and chemo will do its job. You have to have Hope and Faith that you too can overcome this disease.

    We are here to help you in any way that we can.
    Let us know how it is going.
    Take Care
    Lily
  • bjs
    bjs Member Posts: 23
    #4
    Lily50 said:

    Gallbladder Cancer Stage 4
    Hi Bjs

    I'm Lily and a 5 year survivor of GBC. I'm so sorry that you have received this diagnosis. Any cancer diagnosis is terrible and to fall into the rare catagory with us isn't much fun! I can't believe that you had stones for many years and didn't have your gallbladder removed earlier. The gallbladder is a tricky little organ that has potential to cause major havoc in ones life. You are very lucky that you received treatment right away at the hospital. A lot of people have stents installed to get rid of the blockage.
    I'm sorry that the Whipple procedure didn't work out for you, but at least they were able to determine that the cancer originated in the gallbladder.
    Many people have radiation and chemo at the same time. A few of us such as Cheryl and myself couldn't have radiation as our livers were compromised. Xeloda is one of the chemo drugs that others have taken. My cocktail was Gemzar and Cisiplatin.

    This GBC is very sneaky and will keep you on your toes. Shock is an understatement. Some people refer to getting cancer is like getting mugged. You aren't prepared for it, it comes out of nowhere, it is painful, and your whole life is turned upside down. That pretty much says it all.
    Be careful what you read on the Internet as it can be dismal at best. Some of the information is very outdated.
    Yes, you are fortunate that the area is small and hopefully the radiation and chemo will do its job. You have to have Hope and Faith that you too can overcome this disease.

    We are here to help you in any way that we can.
    Let us know how it is going.
    Take Care
    Lily

    Thank you
    Thank you so much Lily for your hope and inspiration! I am a person who searches for information about anything that affects me or my family so when released from the hospital last month, I immediately hit the Internet. That was so depressing! Everywhere I looked recited horrible survival rates! However, my doctors told me that my cancer usually hits much older people who have many other health issues. I am fairly young for it and pretty healthy otherwise. I was doing Pilates twice a week up until a few days before I was hospitalized. i also noticed that some statistics were over a decade old.
    I am delighted to find a long term survivor like you. I have a lot of hope and generally feel pretty well now even with the radiation and chemo. I try to walk a bit every day as I was told that helps and Swedish Cancer Institute, where I am treated, has a naturopathic clinic that works as an adjunct to conventional therapy.I am taking supplements to help with the side effects and to strengthen my own immune system to fight the cancer.
    My husband and family are very suppotive and I have boy and girl grandtwins who are two and a half. I have to live to see them grow!
    Stay well, Betty
  • bjs
    bjs Member Posts: 23
    #5
    westie66 said:

    Gallbladder Cancer Stage 4
    Hi bjs: Welcome to the gallbladder cancer discussion group. You'll see other sites related to gallbladder cancer as well (see gallbladder cancer 2011). I have much the same history as you describe: diagnosed in October 2009 but no gallbladder pain - just an elevated liver enzyme level, surgeries April 15 and 16 (see my blog to see why) which removed my gallbladder, its tumour that had protruded through the wall and into the liver, and removal of part of my liver. Chemo (cisplatin and gemitibine - also known as Gemzar) September-January 2011. No radiation as that would compromise my liver. My lymph nodes have not been tested for cancer but I do have at least 6 nodules of seeded cancer on my peritoneum. Recent CTs and MRIs show no other organ involvement. I am not eligible for surgery that involves removal of part of the peritoneum at this time (too old? too risky?) but I will be starting more chemo in May (FOLFOX - 5FU, oxiciplatin, etc.). I am from Ontario, Canada. You'll see several others on these discussion boards - Lily50, radicaltruth (whose husband has gallbladder cancer), and Maudsie.
    Cheryl

    Hello westie
    Although I am delighted to find you, Lily and the others, I am so sorry that all of you have endured this cancer too. Please keep me posted on your progress and i will be sending positive thoughts your way. So far, my chemo and radistion is not bad but I know that it is cumulative. I was advised to eat a freah pear each day to help reduce nausea and that has helped.
    It sounds like you have a great attitude to fight this disease.
    All the best,
    Betty
  • westie66
    westie66 Member Posts: 642
    #6
    bjs said:

    Thank you
    Thank you so much Lily for your hope and inspiration! I am a person who searches for information about anything that affects me or my family so when released from the hospital last month, I immediately hit the Internet. That was so depressing! Everywhere I looked recited horrible survival rates! However, my doctors told me that my cancer usually hits much older people who have many other health issues. I am fairly young for it and pretty healthy otherwise. I was doing Pilates twice a week up until a few days before I was hospitalized. i also noticed that some statistics were over a decade old.
    I am delighted to find a long term survivor like you. I have a lot of hope and generally feel pretty well now even with the radiation and chemo. I try to walk a bit every day as I was told that helps and Swedish Cancer Institute, where I am treated, has a naturopathic clinic that works as an adjunct to conventional therapy.I am taking supplements to help with the side effects and to strengthen my own immune system to fight the cancer.
    My husband and family are very suppotive and I have boy and girl grandtwins who are two and a half. I have to live to see them grow!
    Stay well, Betty

    Gallbladder Cancer
    Hi Betty: Yes, fortunately the statistics are dated and I figured age might make a difference as well as starting point health. I am 67 and I too was in pretty good health up until the diagnosis. I too had gallstones for many many years and regret not having the gallbladder out earlier but there were no symptoms and it meant taking time off the university. Well, I can't go back.
    What kind of supplements are you taking? That seems to me to be a good idea as an adjunct to conventional therapies. My oncologist is not keen on the supplements - he made me go off all anti-oxidants before chemo started.
    I take paw paw, turmeric, Vit C, Vit D, selenium, Vit B6. I was also taking green tea capsules and papaya pills.
    What chemo regime will you be on after radiation is over? That radiation machine sounds like it could very well do the job. I asked if I should have radiation for the peritoneum nodules but my oncologist said no as it would be too dangerous being near the liver.
    It seems you are completely on the right track! I wish I was on it!
    Cheryl
  • bjs
    bjs Member Posts: 23
    #7
    westie66 said:

    Gallbladder Cancer
    Hi Betty: Yes, fortunately the statistics are dated and I figured age might make a difference as well as starting point health. I am 67 and I too was in pretty good health up until the diagnosis. I too had gallstones for many many years and regret not having the gallbladder out earlier but there were no symptoms and it meant taking time off the university. Well, I can't go back.
    What kind of supplements are you taking? That seems to me to be a good idea as an adjunct to conventional therapies. My oncologist is not keen on the supplements - he made me go off all anti-oxidants before chemo started.
    I take paw paw, turmeric, Vit C, Vit D, selenium, Vit B6. I was also taking green tea capsules and papaya pills.
    What chemo regime will you be on after radiation is over? That radiation machine sounds like it could very well do the job. I asked if I should have radiation for the peritoneum nodules but my oncologist said no as it would be too dangerous being near the liver.
    It seems you are completely on the right track! I wish I was on it!
    Cheryl

    Supplements
    Hi Cheryl,
    I am very lucky because my cancer center, Swedish Cancer Institute, in Seattle has a naturopathic clinic where the doctors only recommend supplements and dosages that are safe for chemo/radiation. I too took supplements for years before my diagnosis but quit all of those because I know that they can interfere with cancer treatment.
    My current supplement regime is one half an adult dose of a multi-vitamin; 600 mg. of calcium, a special fish oil, and B6 tablets (those were recommended by my oncologist, Dr. Gold to counter the hand and feet redness and swelling that is a side effect of Xeloda). All of my supplements are a special brand called "Safe and Sound" that is manufactured under strict conditions by the naturopathic clinic affiliated with Swedish. I do not know how widely they are available. i was advised to take only this brand because the dosages are safe for cancer patients.
    My radiation is with a VMAT machine that circles me twice each treatment giving me 360 degrees of radiation centered upon the cancer. This minimizes the dosage to vital organs nearby and zaps the cancer from every angle. It is amazing! I am not sure what my chemo will be in the second round. I will let you know as soon as I find out.
    Betty

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