Gallbladder Cancer - 2011

Lily50
Lily50 Member Posts: 209
edited March 2014 in Rare and Other Cancers #1
Hello Everybody!
Happy New Year! I know I’m a little late but better late than never.

I have started this new discussion thread because over the last year of posting we have ended up with many different threads going on at the same time. It was hard to keep up with them all. I had many people tell me that they couldn’t find where they originally posted.

Over the course of the last year I have met some wonderful people and I’m so glad that this forum has brought new friends into my life. I’m asking that you all come to this forum and tell us how you are doing, or if you are new tell us a little bit about yourself. There are many success stories out there and with so many people being diagnosed with gallbladder cancer recently we need to show them that there is a way thru this darkness. Give a small profile update (diagnosis, dates, treatments, where you are located, doctors that you love, things that have or have not worked for you etc... Also anything that you might want to share with others. We have lost some very special people in the last year but we always will carry them in our hearts and memories of the many discussions that we have had.

My name is Lily and I am a survivor. My diagnosis was in 2005 as Gallbladder Cancer Stage 4 and I was given a short time frame to live. It is now 2011 and I am so grateful to be here everyday. I had chemo, surgery and more chemo for a year and a half. Recovery was about another year and a half after that and I get better and better every day. I have had no recurrences at this time. I live in Henderson, Nevada (suburb of Las Vegas). I rolled the dice and Lady Luck was on my side. The two most important men that are in my life beside my husband of course is Dr. Russell P. Gollard (Oncologist) and Dr. Howard Reber (Surgeon – UCLA, Jonsson Comprehensive Cancer Center and Pfleger Live Institute). They all saved my life. I believe that you have to treat your body in its entirety (mind, body and spirit), Mediation, yoga, healthy eating and the list goes on. Do whatever makes you feel better.

Ask any of us questions and we will try and help you the best that we can.

Hope and Faith will carry you through.
Take Care
Lily
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Comments

  • maudsie
    maudsie Member Posts: 54
    2011
    Hello to Lily and all of you who follow this forum and this thread in particular. I am Maudsie, I live in Chapel Hill NC and I get my medical treatments at Duke University Hospital, where I was an RN for many years. I was diagnosed with GBC after a routine laparoscopic GB removal in the summer of 2008. Follow-up surgery was done to remove nearby lymph (no cancer seen) and liver wedge (cancer had directly invaded the liver but hopefully all removed). After post-op healing I had chemo and radiation, followed by more chemo, and all my CT scans since have been negative. Cancer markers and other blood tests also all normal. I am still at fairly hight risk for recurrence, and scans are done periodically to check things out. So far....so good. I am here, I am happy to have this forum for support and information. I am also writing on the GB discussion board on cancercompass.com. Thanks, Lily, as always, for your amazing job here, and great idea to start a new thread.
    Best to all,
    Maudsie
  • This comment has been removed by the Moderator
  • Tracy R.
    Tracy R. Member Posts: 6
    unknown said:

    This comment has been removed by the Moderator

    2011 Stage IV Gallbladder Cancer
    My husband was diagnosed with stage IV gallbladder cancer on October 23, 2009 at 9:15 am. He had his portacath put in a week later and we were told that it was for palliative treatment only, that the chemo would not get rid of the cancer as it was too aggressive, but that hopefully it would bide him some time (they told us he has a year at the most).
    We were told that the cancer had spread too far into his stomach lining. The surgeon even took pictures to show us, explaining that all of those specks were cancer, describing it to us "like someone put their fingers in paint and just splattered it over and over". Today, February 7, 2011, I am happy to report that my husband is still by my side, feels well and his last PET/CT scan in November not only showed no cancer in his stomach lining, but that there was "no active cancer". He still receives chemo as a precaution, as his oncologist stated that there is probably microscopic cancer but the treatments are further apart and his next scan will be further apart than the usual 3 months. We do not know what is down the road for us, at this time, as we are aware that recurrence is likely (oncologist told us) but going on what they told us to begin with - does anyone really know? I think not! The evening that we received the news that awful day in October when our lives were turned upside down and inside out - I laid my hand on my husband's stomach - praying to the Lord, telling Him that the specialists were saying that my husband was going to die in less than a year and since they couldn't save him, I begged the Lord to help him and as He was the only one that would be able to give us hope. He has answered my prayers, as there is now hope, where before there was none. My husband's chemo regimen: Xeloda (pills) 2 AM and 2 PM - taken for 7 days in a row - every time he was to receive chemo, he took the pills, receiving the chemo on the 4th day while continuing to take the Xeloda through the 7th day. Outpatient chemo of gemzar and taxatere. Inpatient chemo of gemzar, taxatere and cisplatin. My husband continued to eat well on a daily basis. We changed our diets to organic and no red meat. Ordered the Jack Lelane juicer: we drink carrot/asparagus daily along with using it for many other juice combos. Ordered the Montel Williams blender: husband's favorite is soy ice cream with blueberries and flax seeds. No sugar!! Sugar feeds cancer. Look at all your labels in your cupboard - most regular store bought foods have sugar in them which is why we switched to organic. When he receives his chemo he watches dvd's that are directed at the mind talking to the body about healing and the chemo attacking the cancer. If you get netflix type in cancer and a list of movies will come up for you to rent. Also recommend the dvd's on food, example Food Inc. We also ordered the Gerson Therapy but have not followed it to a T - but made many changes following the information. All I know is that my husband feels better and from the beginning he said that he wasn't going to go without a fight - we both decided that even though the oncologist said that nothing could be done and gave us no hope - that we wanted to have no regrets, so we have made changes but only ones that it couldn't hurt to try. He is on vit. B6, vit. D, magnesium but all were through his oncologist. You cannot add supplements without the oncologist approving as many could go against your chemo regimen.
    Huge thank you to Lily, for starting this thread, and for being there when I first began this adventure and came online searching for help and found a lady that gave me hope when no one else would. Now for the miracle, I was born on July 30th, 1959 and so was Lily - so many people in the world - what were the odds? Another one of God's miracles. Thank you Lord!
    Faith, meditation, diet, exercise, chemo - treat the whole person - what do you have to lose!
  • EILEENM
    EILEENM Member Posts: 5
    Tracy R. said:

    2011 Stage IV Gallbladder Cancer
    My husband was diagnosed with stage IV gallbladder cancer on October 23, 2009 at 9:15 am. He had his portacath put in a week later and we were told that it was for palliative treatment only, that the chemo would not get rid of the cancer as it was too aggressive, but that hopefully it would bide him some time (they told us he has a year at the most).
    We were told that the cancer had spread too far into his stomach lining. The surgeon even took pictures to show us, explaining that all of those specks were cancer, describing it to us "like someone put their fingers in paint and just splattered it over and over". Today, February 7, 2011, I am happy to report that my husband is still by my side, feels well and his last PET/CT scan in November not only showed no cancer in his stomach lining, but that there was "no active cancer". He still receives chemo as a precaution, as his oncologist stated that there is probably microscopic cancer but the treatments are further apart and his next scan will be further apart than the usual 3 months. We do not know what is down the road for us, at this time, as we are aware that recurrence is likely (oncologist told us) but going on what they told us to begin with - does anyone really know? I think not! The evening that we received the news that awful day in October when our lives were turned upside down and inside out - I laid my hand on my husband's stomach - praying to the Lord, telling Him that the specialists were saying that my husband was going to die in less than a year and since they couldn't save him, I begged the Lord to help him and as He was the only one that would be able to give us hope. He has answered my prayers, as there is now hope, where before there was none. My husband's chemo regimen: Xeloda (pills) 2 AM and 2 PM - taken for 7 days in a row - every time he was to receive chemo, he took the pills, receiving the chemo on the 4th day while continuing to take the Xeloda through the 7th day. Outpatient chemo of gemzar and taxatere. Inpatient chemo of gemzar, taxatere and cisplatin. My husband continued to eat well on a daily basis. We changed our diets to organic and no red meat. Ordered the Jack Lelane juicer: we drink carrot/asparagus daily along with using it for many other juice combos. Ordered the Montel Williams blender: husband's favorite is soy ice cream with blueberries and flax seeds. No sugar!! Sugar feeds cancer. Look at all your labels in your cupboard - most regular store bought foods have sugar in them which is why we switched to organic. When he receives his chemo he watches dvd's that are directed at the mind talking to the body about healing and the chemo attacking the cancer. If you get netflix type in cancer and a list of movies will come up for you to rent. Also recommend the dvd's on food, example Food Inc. We also ordered the Gerson Therapy but have not followed it to a T - but made many changes following the information. All I know is that my husband feels better and from the beginning he said that he wasn't going to go without a fight - we both decided that even though the oncologist said that nothing could be done and gave us no hope - that we wanted to have no regrets, so we have made changes but only ones that it couldn't hurt to try. He is on vit. B6, vit. D, magnesium but all were through his oncologist. You cannot add supplements without the oncologist approving as many could go against your chemo regimen.
    Huge thank you to Lily, for starting this thread, and for being there when I first began this adventure and came online searching for help and found a lady that gave me hope when no one else would. Now for the miracle, I was born on July 30th, 1959 and so was Lily - so many people in the world - what were the odds? Another one of God's miracles. Thank you Lord!
    Faith, meditation, diet, exercise, chemo - treat the whole person - what do you have to lose!

    Hi again
    Hi everyone, Thanks for setting up this thread as the other one is hard to follow and to get the most recent posting. My dear Mom was diagnosed with gallbladder cancer on Nov 1st 2010 after a routine Gallbladder removal, the liver resection was not an option due to the spread to the Lymph nodes so Pallitive Chemo was the only option. So far she has 2 chemo sessions down, session 3 starts tomorrow. She is doing well, still no cancer symptoms only chemo symptoms. The last round really knocked her out, she was sleeping night and day. So the consultant has decided to reduce the dose. Not sure how i feel about that. After this cycle hopefully they will know how this treatment is actually doing. She is so positive, all the time believing she is going to beat this. As i really need her to, i am here for all the help and support i can get and hopefully will be able to help others too.
  • EILEENM said:

    Hi again
    Hi everyone, Thanks for setting up this thread as the other one is hard to follow and to get the most recent posting. My dear Mom was diagnosed with gallbladder cancer on Nov 1st 2010 after a routine Gallbladder removal, the liver resection was not an option due to the spread to the Lymph nodes so Pallitive Chemo was the only option. So far she has 2 chemo sessions down, session 3 starts tomorrow. She is doing well, still no cancer symptoms only chemo symptoms. The last round really knocked her out, she was sleeping night and day. So the consultant has decided to reduce the dose. Not sure how i feel about that. After this cycle hopefully they will know how this treatment is actually doing. She is so positive, all the time believing she is going to beat this. As i really need her to, i am here for all the help and support i can get and hopefully will be able to help others too.

    This comment has been removed by the Moderator
  • JayRay
    JayRay Member Posts: 5
    Gallbladder cancer
    Lily, Today is my 63 birthday, and I am using the computer my husband just gave me to reach out and make some new friends. I have Stage 3 gallbladder cancer. Like a lot of people I found out about my gb cancer after having routine gallbladder removal. My local oncologist pretty much told me to go home and get ready to die. My family and I quickly realized I needed a second opinion.
    I had Stage 1 uterine cancer in 2007 - had total hysterectomy and told I was cancer free. Then in 2008 I had Stage 1 breast cancer-had lumpectomy and radiation and told I was cancer free. So now here I go again, and it doesn't get easier. I live in a little bitty town in Delaware so I ended up going to Fox Chase Cancer Center in Philadelpia, PA which is about two hours from here. So far I have had MAJOR surgery to remove small tumor in liver and clean up gallbladder area - no other signs of cancer, lymph nodes clear and margins clear. When I first saw my scar I thought they had cut me in two. YIKES!
    I just finished two cycles of chemo - Gemcitibine which kicked my butt. I have a super sensitive stomach and intestines and I can't seem to get them to settle down. I have to take lots of meds for side effects which leads to more side effects, etc. In March I start daily radiation along with weekly chemo which sounds scary to me.
    I'd like to know from those of you who have been down this road some ways to help myself. Any tips or anything you found that could reduce stress and make my body as strong as possible so I don't feel so lousy. I'm trying to stay positive. I wear my Wonder Woman bracelet to each treatment, but today I am feeling like Wimpy Woman. I could use some words of encouragement. Thanks and God bless you. This is a hard fight but it helps to know that people survive and keep going like you are doing. JayRay
  • maudsie
    maudsie Member Posts: 54
    JayRay said:

    Gallbladder cancer
    Lily, Today is my 63 birthday, and I am using the computer my husband just gave me to reach out and make some new friends. I have Stage 3 gallbladder cancer. Like a lot of people I found out about my gb cancer after having routine gallbladder removal. My local oncologist pretty much told me to go home and get ready to die. My family and I quickly realized I needed a second opinion.
    I had Stage 1 uterine cancer in 2007 - had total hysterectomy and told I was cancer free. Then in 2008 I had Stage 1 breast cancer-had lumpectomy and radiation and told I was cancer free. So now here I go again, and it doesn't get easier. I live in a little bitty town in Delaware so I ended up going to Fox Chase Cancer Center in Philadelpia, PA which is about two hours from here. So far I have had MAJOR surgery to remove small tumor in liver and clean up gallbladder area - no other signs of cancer, lymph nodes clear and margins clear. When I first saw my scar I thought they had cut me in two. YIKES!
    I just finished two cycles of chemo - Gemcitibine which kicked my butt. I have a super sensitive stomach and intestines and I can't seem to get them to settle down. I have to take lots of meds for side effects which leads to more side effects, etc. In March I start daily radiation along with weekly chemo which sounds scary to me.
    I'd like to know from those of you who have been down this road some ways to help myself. Any tips or anything you found that could reduce stress and make my body as strong as possible so I don't feel so lousy. I'm trying to stay positive. I wear my Wonder Woman bracelet to each treatment, but today I am feeling like Wimpy Woman. I could use some words of encouragement. Thanks and God bless you. This is a hard fight but it helps to know that people survive and keep going like you are doing. JayRay

    Hi JayRay
    Hello JayRay -- it looks like you are about on the same path I am, or was. Same age, same incidental discovery of GB cancer, same follow-up surgery with liver margins clear, and no lymph involvement found. Major difference: you have such a history with other cancers! Yikes! I am so sorry, and here you go again. I really didn't have a tough a time with Gemzar as you seem to be having, so it is difficult for me to advise you about what worked. I had 1-2 bad days every week, and the rest were not great but OK. My radiation coincided with xeloda, which I took before I started the Gemzar. So we are on a slightly different chemo regimen. I will tell you that although radiation is every day, 5 days a week, so it's a real commitment, I found it easy to tolerate. It really didn't make any symptoms worse for me, it was just something that needed to be done every day. Maybe I was a little more tired, but really I managed fine, hard to tell, and I drove myself back and forth to radiation every day. I made a lot of smoothies with fruit and yogurt. Worked for me. Really, the best I can give you here is encouragement: You are doing great, you are on the right path, your chances of beating this thing are very good, you have caught this relatively early and you sought out immediate appropriate treatment and did not take NO for an answer. Bravo! You ARE a wonder woman! Return again soon and let us know how you are doing.
    Maudsie
  • Lily50
    Lily50 Member Posts: 209
    EILEENM said:

    Hi again
    Hi everyone, Thanks for setting up this thread as the other one is hard to follow and to get the most recent posting. My dear Mom was diagnosed with gallbladder cancer on Nov 1st 2010 after a routine Gallbladder removal, the liver resection was not an option due to the spread to the Lymph nodes so Pallitive Chemo was the only option. So far she has 2 chemo sessions down, session 3 starts tomorrow. She is doing well, still no cancer symptoms only chemo symptoms. The last round really knocked her out, she was sleeping night and day. So the consultant has decided to reduce the dose. Not sure how i feel about that. After this cycle hopefully they will know how this treatment is actually doing. She is so positive, all the time believing she is going to beat this. As i really need her to, i am here for all the help and support i can get and hopefully will be able to help others too.

    Eileen's Mom
    Hi Eileen,

    I'm glad to hear that the chemo sessions are going well. I can relate to sleeping all the time during treatment due to the aggressive treatment that I received and the many pain medications that I was on. Chemo can really beat you up. I looked at it as if my body needs to rest than that is what I was going to do. Just because they said liver resection isn't an option you never know how things can change and it might just become an option after she completes some chemo treatment. I had to endure 9 months of chemo before I was cleared for surgery. Don't give up Hope.

    Reduction of the chemo can be a little bit scary but if that is what the oncologist is recommending that that is what needs to be done. The body can only handle so much and then it needs a break. You have to be able to trust the oncologists decision as long as you are comfortable with their decisions. If not then you need to look into other options. Always keep your options open. A positive mindset is very important. The mind can help the body heal.

    She is very lucky to have such a kind, caring and supportive daughter. She is really proud of you. You need her and she needs you too.

    Let us know how it is going.
    Take Care
    Lily
  • Lily50
    Lily50 Member Posts: 209
    JayRay said:

    Gallbladder cancer
    Lily, Today is my 63 birthday, and I am using the computer my husband just gave me to reach out and make some new friends. I have Stage 3 gallbladder cancer. Like a lot of people I found out about my gb cancer after having routine gallbladder removal. My local oncologist pretty much told me to go home and get ready to die. My family and I quickly realized I needed a second opinion.
    I had Stage 1 uterine cancer in 2007 - had total hysterectomy and told I was cancer free. Then in 2008 I had Stage 1 breast cancer-had lumpectomy and radiation and told I was cancer free. So now here I go again, and it doesn't get easier. I live in a little bitty town in Delaware so I ended up going to Fox Chase Cancer Center in Philadelpia, PA which is about two hours from here. So far I have had MAJOR surgery to remove small tumor in liver and clean up gallbladder area - no other signs of cancer, lymph nodes clear and margins clear. When I first saw my scar I thought they had cut me in two. YIKES!
    I just finished two cycles of chemo - Gemcitibine which kicked my butt. I have a super sensitive stomach and intestines and I can't seem to get them to settle down. I have to take lots of meds for side effects which leads to more side effects, etc. In March I start daily radiation along with weekly chemo which sounds scary to me.
    I'd like to know from those of you who have been down this road some ways to help myself. Any tips or anything you found that could reduce stress and make my body as strong as possible so I don't feel so lousy. I'm trying to stay positive. I wear my Wonder Woman bracelet to each treatment, but today I am feeling like Wimpy Woman. I could use some words of encouragement. Thanks and God bless you. This is a hard fight but it helps to know that people survive and keep going like you are doing. JayRay

    JayRay's 3rd Round
    Hi JayRay,

    Happy Belated Birthday!!! What a great birthday present your husband gave you! Now you have the ability to talk to all of us whenever you would like. I love to make new friends especially when we all have so much in common. This is a terrible disease and it will take all of your super powers to beat this again. Kudos to you for never giving up and always fighting. This is a road that you have already traveled, but you are at a different fork in the road.

    I'm so glad to hear that you immediately got a second opinion and didn't stay with that oncologist. Some doctors are just so arrogant that it drives me crazy. Sometimes it is necessary to travel to get the best possible care that you can get. My surgeon was actually 6 hours away in another state, but I can tell you that for me even though it was difficult at times to make that trip it was well worth it. Clear lymph nodes and margins was great news! I think most of us have had that YIKES! moment when we looked at our scars. I call mine my hockey stick, straight down the breast bone, angles to the right hip. Not to pretty either but it is just one of the battle scars that I wear proudly. It is a reminder everyday that I fought the battle and won.

    I had Gemcitibine (Gemzar) and Cisplatin, not sure which one was worst. Some people have issues with Gemzar and others don't. I guess it just depends on our bodies. Which is why the oncologist doesn't tell you about everything until you ask questions. They will tell you everybody is different so you just have to wait and see what happens. Make sure that no matter how insignificant the issue may seem get peace of mind for yourself and ask questions. Many people have chemo and radiation at the same time. I have had many people tell me that the radiation makes you very tired. I know that chemo makes you tired but I never had radiation treatment as my liver was compromised and the oncologist and surgeon decided that it wouldn't be a benefit to me. You will just have to have an open mind and take it in stride.

    I found that yoga, mediation, light exercise (walking), small meals throughout the day and lots of hydration helped. I also received extra hydration when I was receiving my chemo. It isn't standard in some states but I asked for it. Also eating something light the day before and during the chemo treatment helped. I too was a big smoothie fan along with fruits and vegtables, lean protein. I elimated red meats along with negative people. I got a calandar marked my treatment dates and when I completed them I would mark a big black X through the date. That way I had a visual of how many I finished and how many more I had to go, it made me feel like I was making progress. I kept a log of good days and bad days and then I would try to figure out what was different about the good days vs the bad days. You can help yourself feel better just by finding out what works for you.

    You need to find a Wonder Women picture to add to your profile. You are definitely a Wonder Women to me since you have been up to bat twice and have already beat two different types of cancer. Keep swinging and hit it out of the park again.

    Let us know how things are going and ask us anything you want, we will try to help.

    Take Care
    Lily
  • westie66
    westie66 Member Posts: 642
    JayRay said:

    Gallbladder cancer
    Lily, Today is my 63 birthday, and I am using the computer my husband just gave me to reach out and make some new friends. I have Stage 3 gallbladder cancer. Like a lot of people I found out about my gb cancer after having routine gallbladder removal. My local oncologist pretty much told me to go home and get ready to die. My family and I quickly realized I needed a second opinion.
    I had Stage 1 uterine cancer in 2007 - had total hysterectomy and told I was cancer free. Then in 2008 I had Stage 1 breast cancer-had lumpectomy and radiation and told I was cancer free. So now here I go again, and it doesn't get easier. I live in a little bitty town in Delaware so I ended up going to Fox Chase Cancer Center in Philadelpia, PA which is about two hours from here. So far I have had MAJOR surgery to remove small tumor in liver and clean up gallbladder area - no other signs of cancer, lymph nodes clear and margins clear. When I first saw my scar I thought they had cut me in two. YIKES!
    I just finished two cycles of chemo - Gemcitibine which kicked my butt. I have a super sensitive stomach and intestines and I can't seem to get them to settle down. I have to take lots of meds for side effects which leads to more side effects, etc. In March I start daily radiation along with weekly chemo which sounds scary to me.
    I'd like to know from those of you who have been down this road some ways to help myself. Any tips or anything you found that could reduce stress and make my body as strong as possible so I don't feel so lousy. I'm trying to stay positive. I wear my Wonder Woman bracelet to each treatment, but today I am feeling like Wimpy Woman. I could use some words of encouragement. Thanks and God bless you. This is a hard fight but it helps to know that people survive and keep going like you are doing. JayRay

    Gallbladder cancer
    Hi Jay Ray and others: I was first informed that there could be a "mystery" growth from my gallbladder in November 2009. I had a CT scan in January that showed a definite problem. I saw a gastro-intestinal surgeon after that and had surgery to remove, laparoscopically, the gallbladder and whatever else may be lurking there. I had the surgery April 15. The gallbladder had a 4 cm tumour protruding through its wall and into the liver. The surgeon removed the gallbladder and a portion of the liver, still laparoscopically. However, I ended up with 2nd surgery, open incision, because a blood vessel had burst in my abdomen. I was in intensive care for 9 days. I couldn't start chemotherapy until September as it took that long for the incisions to heal. I had an MRI in July and it showed no tumours, at least none >1cm in size. That was used as the monitoring base. I had 6 cycles of chemotherapy (2 weeks on, 1 week off) using cisplatin and gemitibine. However, after the 1st cycle I was hospitalized because of a bleeding colon and chemotherapy was discontinued until October at a 25% reduced dosage. I also had to have two transfusions to improve my red blood cell count and Neulasta injections to bring up my white blood cell count. I had very little side effects from the chemo - hardly any nausea, just occasional bouts of fatigue, very little hair loss. I finished chemotherapy in early February because MRIs taken in December showed no growths. Now I am on monitoring - CTs or MRIs every 3 months with visits to the surgeon.

    Unfortunately just before Christmas I developed an incisional hernia (right where the open incision from the 2nd surgery was located) and now that will have to be fixed.

    Before the start of chemotherapy in September and now after it is over I take a lot of anti-oxidants: milk thistle, Vit C, Vit D, selenium, plus pawpaw and turmeric supplements. I try to eat healthily. I didn't have great appetite after the surgery and during chemotherapy, but that has returned with a vengeance - I'm hungry (the cold winter we're having hasn't helped!). As well, I had a positive attitude throughout and a wonderful group of friends as support. I also have a caring little westie (see picture) and looking after her surely helped me "get outside of myself".

    So, that is my story!

    Cheryl
  • westie66
    westie66 Member Posts: 642
    westie66 said:

    Gallbladder cancer
    Hi Jay Ray and others: I was first informed that there could be a "mystery" growth from my gallbladder in November 2009. I had a CT scan in January that showed a definite problem. I saw a gastro-intestinal surgeon after that and had surgery to remove, laparoscopically, the gallbladder and whatever else may be lurking there. I had the surgery April 15. The gallbladder had a 4 cm tumour protruding through its wall and into the liver. The surgeon removed the gallbladder and a portion of the liver, still laparoscopically. However, I ended up with 2nd surgery, open incision, because a blood vessel had burst in my abdomen. I was in intensive care for 9 days. I couldn't start chemotherapy until September as it took that long for the incisions to heal. I had an MRI in July and it showed no tumours, at least none >1cm in size. That was used as the monitoring base. I had 6 cycles of chemotherapy (2 weeks on, 1 week off) using cisplatin and gemitibine. However, after the 1st cycle I was hospitalized because of a bleeding colon and chemotherapy was discontinued until October at a 25% reduced dosage. I also had to have two transfusions to improve my red blood cell count and Neulasta injections to bring up my white blood cell count. I had very little side effects from the chemo - hardly any nausea, just occasional bouts of fatigue, very little hair loss. I finished chemotherapy in early February because MRIs taken in December showed no growths. Now I am on monitoring - CTs or MRIs every 3 months with visits to the surgeon.

    Unfortunately just before Christmas I developed an incisional hernia (right where the open incision from the 2nd surgery was located) and now that will have to be fixed.

    Before the start of chemotherapy in September and now after it is over I take a lot of anti-oxidants: milk thistle, Vit C, Vit D, selenium, plus pawpaw and turmeric supplements. I try to eat healthily. I didn't have great appetite after the surgery and during chemotherapy, but that has returned with a vengeance - I'm hungry (the cold winter we're having hasn't helped!). As well, I had a positive attitude throughout and a wonderful group of friends as support. I also have a caring little westie (see picture) and looking after her surely helped me "get outside of myself".

    So, that is my story!

    Cheryl

    Radiation Therapy
    Hi: One thing I forgot - I and none of the gallbladder cancer "victims" I've been corresponding with here in Canada have had (as far as I know anyways) radiation in addition to chemotherapy and yet many (even most) of the USA gallbladder cancer people seem to have radiation as an addition to chemotherapy. Why is this? What is the radiation targeting if the gallbladder and its tumour and in some cases parts of the liver have been removed?
    Cheryl
  • westie66
    westie66 Member Posts: 642
    westie66 said:

    Radiation Therapy
    Hi: One thing I forgot - I and none of the gallbladder cancer "victims" I've been corresponding with here in Canada have had (as far as I know anyways) radiation in addition to chemotherapy and yet many (even most) of the USA gallbladder cancer people seem to have radiation as an addition to chemotherapy. Why is this? What is the radiation targeting if the gallbladder and its tumour and in some cases parts of the liver have been removed?
    Cheryl

    Peritoneum Chemo
    Hi: I also forgot this (chemo brain!). Did anyone out there get nodules (likely cancerous) on the omentum or elsewhere in the peritoneum cavity following diagnosis of gallbladder cancer and removal of the gallbladder and whatever else needed to go? My latest CT scan (for another reason not related to cancer) shows these nodules and I'm awaiting an appointment with my oncologist. I have read on another discussion board that intra-peritoneum chemo was the best way to go but I've never heard of this. I assume it means the chemo is directed directly to the peritoneum somehow? Any help on this would be appreciated.
    Cheryl
  • JayRay
    JayRay Member Posts: 5
    westie66 said:

    Gallbladder cancer
    Hi Jay Ray and others: I was first informed that there could be a "mystery" growth from my gallbladder in November 2009. I had a CT scan in January that showed a definite problem. I saw a gastro-intestinal surgeon after that and had surgery to remove, laparoscopically, the gallbladder and whatever else may be lurking there. I had the surgery April 15. The gallbladder had a 4 cm tumour protruding through its wall and into the liver. The surgeon removed the gallbladder and a portion of the liver, still laparoscopically. However, I ended up with 2nd surgery, open incision, because a blood vessel had burst in my abdomen. I was in intensive care for 9 days. I couldn't start chemotherapy until September as it took that long for the incisions to heal. I had an MRI in July and it showed no tumours, at least none >1cm in size. That was used as the monitoring base. I had 6 cycles of chemotherapy (2 weeks on, 1 week off) using cisplatin and gemitibine. However, after the 1st cycle I was hospitalized because of a bleeding colon and chemotherapy was discontinued until October at a 25% reduced dosage. I also had to have two transfusions to improve my red blood cell count and Neulasta injections to bring up my white blood cell count. I had very little side effects from the chemo - hardly any nausea, just occasional bouts of fatigue, very little hair loss. I finished chemotherapy in early February because MRIs taken in December showed no growths. Now I am on monitoring - CTs or MRIs every 3 months with visits to the surgeon.

    Unfortunately just before Christmas I developed an incisional hernia (right where the open incision from the 2nd surgery was located) and now that will have to be fixed.

    Before the start of chemotherapy in September and now after it is over I take a lot of anti-oxidants: milk thistle, Vit C, Vit D, selenium, plus pawpaw and turmeric supplements. I try to eat healthily. I didn't have great appetite after the surgery and during chemotherapy, but that has returned with a vengeance - I'm hungry (the cold winter we're having hasn't helped!). As well, I had a positive attitude throughout and a wonderful group of friends as support. I also have a caring little westie (see picture) and looking after her surely helped me "get outside of myself".

    So, that is my story!

    Cheryl

    I Love Your Dog
    Cheryl, Thanks for replying to my post. I am brand new to discussion boards and to using a computer. That's why my husband got me one. I have been sick the past week. I saw my oncologist yesterday. Driving for over 4 hours in a car when you feel lousy makes for a long day. The dr. thinks I might have strep throat although I don't know where I might have got it - my blood count shows I have an infection. Also the dr. said I have thrush so I am on meds for both. I feel my body is overwhelmed from the chemo and I don't know how to stay well. I try to eat well but it is hard when you don't feel good.
    Well, I hope things are going better for you. I had to tell you that I love your Westie. I had a Westie for 15 years. He was the best dog. After he died, it took me over two years before I was ready to get another dog. Now I have a 5 yr. old golden retriever that loves to cuddle and I rescued a mixed breed terrier that is 3. He plays nonstop. I miss being able to go on walks with my buddies, but I still spend alot of time just loving them.
    I like making pet scarfs so I can raise money for the local shelters. My dream is that one day Delaware will become a no kill state. Oh, I also have our queen cat who rules the house. Yes, I love animals. They have brought me joy all my life and they are good
    medicine when I am feeling down. All my best to you, JayRay
  • JayRay
    JayRay Member Posts: 5
    Lily50 said:

    JayRay's 3rd Round
    Hi JayRay,

    Happy Belated Birthday!!! What a great birthday present your husband gave you! Now you have the ability to talk to all of us whenever you would like. I love to make new friends especially when we all have so much in common. This is a terrible disease and it will take all of your super powers to beat this again. Kudos to you for never giving up and always fighting. This is a road that you have already traveled, but you are at a different fork in the road.

    I'm so glad to hear that you immediately got a second opinion and didn't stay with that oncologist. Some doctors are just so arrogant that it drives me crazy. Sometimes it is necessary to travel to get the best possible care that you can get. My surgeon was actually 6 hours away in another state, but I can tell you that for me even though it was difficult at times to make that trip it was well worth it. Clear lymph nodes and margins was great news! I think most of us have had that YIKES! moment when we looked at our scars. I call mine my hockey stick, straight down the breast bone, angles to the right hip. Not to pretty either but it is just one of the battle scars that I wear proudly. It is a reminder everyday that I fought the battle and won.

    I had Gemcitibine (Gemzar) and Cisplatin, not sure which one was worst. Some people have issues with Gemzar and others don't. I guess it just depends on our bodies. Which is why the oncologist doesn't tell you about everything until you ask questions. They will tell you everybody is different so you just have to wait and see what happens. Make sure that no matter how insignificant the issue may seem get peace of mind for yourself and ask questions. Many people have chemo and radiation at the same time. I have had many people tell me that the radiation makes you very tired. I know that chemo makes you tired but I never had radiation treatment as my liver was compromised and the oncologist and surgeon decided that it wouldn't be a benefit to me. You will just have to have an open mind and take it in stride.

    I found that yoga, mediation, light exercise (walking), small meals throughout the day and lots of hydration helped. I also received extra hydration when I was receiving my chemo. It isn't standard in some states but I asked for it. Also eating something light the day before and during the chemo treatment helped. I too was a big smoothie fan along with fruits and vegtables, lean protein. I elimated red meats along with negative people. I got a calandar marked my treatment dates and when I completed them I would mark a big black X through the date. That way I had a visual of how many I finished and how many more I had to go, it made me feel like I was making progress. I kept a log of good days and bad days and then I would try to figure out what was different about the good days vs the bad days. You can help yourself feel better just by finding out what works for you.

    You need to find a Wonder Women picture to add to your profile. You are definitely a Wonder Women to me since you have been up to bat twice and have already beat two different types of cancer. Keep swinging and hit it out of the park again.

    Let us know how things are going and ask us anything you want, we will try to help.

    Take Care
    Lily

    Love Your Reply
    Lily, You seem like such a positive person and that's what I need right now. I was just telling Cheryl that I am brand new to these discussion boards so bear with me if I mess up or am slow at responding. I have been sick with an infection and my dr. thinks it is strep throat and I also have thrush. My immune system doesn't seem to be working very well. I was wondering what do you put in your smoothies? I want to try to build myself up. Thanks for your help. JayRay
  • JayRay
    JayRay Member Posts: 5
    maudsie said:

    Hi JayRay
    Hello JayRay -- it looks like you are about on the same path I am, or was. Same age, same incidental discovery of GB cancer, same follow-up surgery with liver margins clear, and no lymph involvement found. Major difference: you have such a history with other cancers! Yikes! I am so sorry, and here you go again. I really didn't have a tough a time with Gemzar as you seem to be having, so it is difficult for me to advise you about what worked. I had 1-2 bad days every week, and the rest were not great but OK. My radiation coincided with xeloda, which I took before I started the Gemzar. So we are on a slightly different chemo regimen. I will tell you that although radiation is every day, 5 days a week, so it's a real commitment, I found it easy to tolerate. It really didn't make any symptoms worse for me, it was just something that needed to be done every day. Maybe I was a little more tired, but really I managed fine, hard to tell, and I drove myself back and forth to radiation every day. I made a lot of smoothies with fruit and yogurt. Worked for me. Really, the best I can give you here is encouragement: You are doing great, you are on the right path, your chances of beating this thing are very good, you have caught this relatively early and you sought out immediate appropriate treatment and did not take NO for an answer. Bravo! You ARE a wonder woman! Return again soon and let us know how you are doing.
    Maudsie

    Thanks for your reply
    Maudsie, I like your attitude. Yes we have to keep strong and keep fighting. I have too much I still want to do. I told Lily and Cheryl that I have been sick. Most likely I have strep throat and I have thrush. On meds for them but still not feeling that great.
    You mentioned smoothies too. What do you put in them? Do they help your immune system?
    I do know that radiation is a big commitment with it being five days a week. Since I live over two hours from my cancer center, I am going to be staying in Philadelphia for five weeks starting March 14. I hope I have an easy time with my radiation, but I will just have to wait and see. Wish me luck. JayRay
  • JayRay said:

    I Love Your Dog
    Cheryl, Thanks for replying to my post. I am brand new to discussion boards and to using a computer. That's why my husband got me one. I have been sick the past week. I saw my oncologist yesterday. Driving for over 4 hours in a car when you feel lousy makes for a long day. The dr. thinks I might have strep throat although I don't know where I might have got it - my blood count shows I have an infection. Also the dr. said I have thrush so I am on meds for both. I feel my body is overwhelmed from the chemo and I don't know how to stay well. I try to eat well but it is hard when you don't feel good.
    Well, I hope things are going better for you. I had to tell you that I love your Westie. I had a Westie for 15 years. He was the best dog. After he died, it took me over two years before I was ready to get another dog. Now I have a 5 yr. old golden retriever that loves to cuddle and I rescued a mixed breed terrier that is 3. He plays nonstop. I miss being able to go on walks with my buddies, but I still spend alot of time just loving them.
    I like making pet scarfs so I can raise money for the local shelters. My dream is that one day Delaware will become a no kill state. Oh, I also have our queen cat who rules the house. Yes, I love animals. They have brought me joy all my life and they are good
    medicine when I am feeling down. All my best to you, JayRay

    This comment has been removed by the Moderator
  • westie66
    westie66 Member Posts: 642
    JayRay said:

    I Love Your Dog
    Cheryl, Thanks for replying to my post. I am brand new to discussion boards and to using a computer. That's why my husband got me one. I have been sick the past week. I saw my oncologist yesterday. Driving for over 4 hours in a car when you feel lousy makes for a long day. The dr. thinks I might have strep throat although I don't know where I might have got it - my blood count shows I have an infection. Also the dr. said I have thrush so I am on meds for both. I feel my body is overwhelmed from the chemo and I don't know how to stay well. I try to eat well but it is hard when you don't feel good.
    Well, I hope things are going better for you. I had to tell you that I love your Westie. I had a Westie for 15 years. He was the best dog. After he died, it took me over two years before I was ready to get another dog. Now I have a 5 yr. old golden retriever that loves to cuddle and I rescued a mixed breed terrier that is 3. He plays nonstop. I miss being able to go on walks with my buddies, but I still spend alot of time just loving them.
    I like making pet scarfs so I can raise money for the local shelters. My dream is that one day Delaware will become a no kill state. Oh, I also have our queen cat who rules the house. Yes, I love animals. They have brought me joy all my life and they are good
    medicine when I am feeling down. All my best to you, JayRay

    Gallbladder Cancer
    Hi JayRay: Yes, Charlotte is a sweetie - she was a breeder in a horrible puppy mill near Montreal, PQ for 5 years and terribly mistreated. Don't know how she ended up so sweet but there it is. She just had the end of her tail lopped off by accident at the groomer's and so is sporting a wild purple bandage to cover her stitches (the cut was to the bone!).
    I, too, recommend smoothies. They at least go down (although I was only troubled twice by nausea and that after eating something oily). I make mine in a blender with yogurt or soy milk, fresh fruit like blueberries (frozen usually), and a cup full of whey protein powder (that I get at Costco - cheapest place I could find here). I like Vanilla and Chocolate but you can get plain too. A 4.4 lb container cost about $30 and it lasts for a very long time. You get a whopping amount of protein with this. I also drank a lot of Ensure or Glucerna or Boost meal replacements - to me they taste like milkshakes! And salt-free soda crackers do stem the nausea. Here you get anti-nausea stuff with the chemo and pills for 2 days after the chemo to take twice/day. Because I didn't seem to get much nausea, I didn't have to take the expensive nausea pills. The ones I took were free. Avoiding oily fatty stuff helps! We also get steroids with the chemo to stem off the fatigue, at least for a few days after chemo. My most tired moments were after all of the chemo cycles were over. I would go to bed with Charlotte for an afternoon nap and book read. But I haven't been tired for awhile now and so miss those pleasant lazy afternoons!
    I still don't know why you are getting radiation if you tumour is gone. Not that you shouldn't, but I don't know why. You are lucky that your lymph nodes were "infected" - that is a big plus!
    Keep us "posted" and cuddle your oh-so-sympathetic dogs.
    Cheryl
  • maudsie
    maudsie Member Posts: 54
    JayRay said:

    Love Your Reply
    Lily, You seem like such a positive person and that's what I need right now. I was just telling Cheryl that I am brand new to these discussion boards so bear with me if I mess up or am slow at responding. I have been sick with an infection and my dr. thinks it is strep throat and I also have thrush. My immune system doesn't seem to be working very well. I was wondering what do you put in your smoothies? I want to try to build myself up. Thanks for your help. JayRay

    Hi JayRay and others
    Hi, It's Maudsie again, hello JayRay Cheryl and Lily and Radical Truth and everyone. Sounds like in general everyone is doing well.
    JayRay! Thrush and strep throat! I hope better today. Immune systems do take a beating when we're on chemo....they may need to give you a week or two off from the chemo to allow your system to build up again to clear the infections, along with the help of the antibiotic for the strep and the antifungal for the thrush. You ask about smoothies. In my case, I didn't, and don't, add anything special. Yogurt and frozen blueberries, mostly, with other fruit. But protein powder is a great idea, and there are all sort of other supplements that others can tell you more about.

    Cheryl, there is interpertioneal chemo, instilled directly into the abdominal cavity, and sometimes it's heated for improved action, I don't know how widespread the availability is, however, it's something to research.

    Radiation question. I had radiation after the removal of the GB and the liver portion and some lymph. As soon as I was healed enough. Even though there was no evidence of any cancer left, the idea of radiation is just for added insurance. They radiate the gallbladder bed in case leftover cells are lurking about in there. I had the radiation along with xeloda on the same days and same schedule, to potentiate the effect of the radiation. After that, I was on Gemzar for a few months. This was all done in the face of no evidence of lingering cancer, but as we know, scans don't show everything. My oncologist said it's best to go the extra mile. And I'd go as many miles as it takes to improve my chances. Having said all that, there is very little proof that radiation per se helps a great deal in the case of GBC. And of course radiation is nothing to take lightly, as it does have harmful effects too. I don't really know why U.S. and Canada differ in the use of radiation. Maybe has to do with money and/or insurance issues.

    Wishing us all well. Spring is coming!

    Maudsie
  • westie66
    westie66 Member Posts: 642
    maudsie said:

    Hi JayRay and others
    Hi, It's Maudsie again, hello JayRay Cheryl and Lily and Radical Truth and everyone. Sounds like in general everyone is doing well.
    JayRay! Thrush and strep throat! I hope better today. Immune systems do take a beating when we're on chemo....they may need to give you a week or two off from the chemo to allow your system to build up again to clear the infections, along with the help of the antibiotic for the strep and the antifungal for the thrush. You ask about smoothies. In my case, I didn't, and don't, add anything special. Yogurt and frozen blueberries, mostly, with other fruit. But protein powder is a great idea, and there are all sort of other supplements that others can tell you more about.

    Cheryl, there is interpertioneal chemo, instilled directly into the abdominal cavity, and sometimes it's heated for improved action, I don't know how widespread the availability is, however, it's something to research.

    Radiation question. I had radiation after the removal of the GB and the liver portion and some lymph. As soon as I was healed enough. Even though there was no evidence of any cancer left, the idea of radiation is just for added insurance. They radiate the gallbladder bed in case leftover cells are lurking about in there. I had the radiation along with xeloda on the same days and same schedule, to potentiate the effect of the radiation. After that, I was on Gemzar for a few months. This was all done in the face of no evidence of lingering cancer, but as we know, scans don't show everything. My oncologist said it's best to go the extra mile. And I'd go as many miles as it takes to improve my chances. Having said all that, there is very little proof that radiation per se helps a great deal in the case of GBC. And of course radiation is nothing to take lightly, as it does have harmful effects too. I don't really know why U.S. and Canada differ in the use of radiation. Maybe has to do with money and/or insurance issues.

    Wishing us all well. Spring is coming!

    Maudsie

    Peritoneal Carcinoma
    HI Maudsie: I saw my oncologist today who was basically flummoxed that the chemo hadn't worked to eliminate or slow down the nodules on the peritonium. He is scheduling another MRI (I had one in December ) to compare results from the CT scan (I will light up for sure!). I asked why no more chemo if in fact the nodules have multiplied even during chemo (my idea is to zap them again and again) but he said that there is nothing to be gained by doing that as the nodules appear to be resistant to the chemo (I was on GemCis for 6 cycles but at 75% dose). No "let's go the extra mile" from him! I noted on another discussion board that taxol and cisplatin were used for peritoneum carcinoma but by that time I was so discouraged my mind was numb. The only other thing I found out when I asked about lymph nodes (mine were never tested as I came into the system as an emergency patient after a horrid surgery that removed the gallbladder, tumour, and part of the liver laparoscopically), was that once you have soft tissue nodules it is assumed that cancer is in the lymph nodes. Yikes. In other words, he may have been telling me go home and wait to die!

    However, that is not an option. But can't do much until the MRI. There is only one doctor in Canada who does the intra-peritoneum thing and he is in Calgary, Alberta, a long way from here. And he may only do it for colon cancer. I'll find out though as I'm from Calgary. Unfortunatley our medical systems don't go well between provinces let alone another country.

    Not a great day!

    Cheryl
  • Lily50
    Lily50 Member Posts: 209
    JayRay said:

    Love Your Reply
    Lily, You seem like such a positive person and that's what I need right now. I was just telling Cheryl that I am brand new to these discussion boards so bear with me if I mess up or am slow at responding. I have been sick with an infection and my dr. thinks it is strep throat and I also have thrush. My immune system doesn't seem to be working very well. I was wondering what do you put in your smoothies? I want to try to build myself up. Thanks for your help. JayRay

    Jay Ray's Smoothies
    Hi JayRay,

    A positive attitude can be very helpful in fighting this disease. I'm sorry that you have been ill, it just seems to come with the territory. Chemo plays havoc on your immune system for sure. Still even after all this time for me when I get the slightest sniffle it can put me down for a week easily. Strep throat can be awful. You should be very careful when you are out and about. Surgical masks are the way to go, they can help alot.

    I just use fresh fruit, vanilla yogurt, skim milk, ice and sometimes a 1/2 tsp. vanilla if the fruit I use is a little bitter. Sometimes granola, flax seed and protein powder. Depending on what I feel like. Others I know make their smooties with carnation instant breakfast mix. I tried all the supplements (ensure, etc.) but I really didn't care for them. Since I like most fruits I would get fresh fruits and then freeze them so that on days I wasn't feeling too hot I could just reach in the freezer for a bag. I was always into making sure that if I was having a good day then I would do whatever I could to make my life easier for the bad days.

    Hope you are having a better day today.
    Take Care
    Lily