Gallbladder Cancer Stage 4

Linda1949 said:

Gallbladder Cancer
Dearest Lily,

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

Linda1949

Linds's Chemo and Radiation Journey
Hi Linda,

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

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

Take Care
Lily

isellabrate said:

Gallbladder Cancer
Hi, Lily,

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

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

Jan

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

Lily50 said:

Linds's Chemo and Radiation Journey
Hi Linda,

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

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

Take Care
Lily

Linda's journey through treatment for GBC
Lily,

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

Linda

Linda1949 said:

Linda's journey through treatment for GBC
Lily,

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

Linda

Linda's journey
Hi Linda,

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

Take Care
Lily

Lily50 said:

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

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

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

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

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

kjgrieger said:

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

Kellie's Mom
Hi Kellie,

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

Linda1949 said:

GBC
Cheryl,

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

Linda

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

Cheryl

Lily50 said:

Kellie's Mom
Hi Kellie,

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

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

Lily50 said:

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

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

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

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

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