Gallbladder Cancer - 2011

maudsie

Lily50 said:

Maudsie's great advice
Hi Maudsie!

Glad you are doing well. Your two cents carry lots of weight with us. We are so lucky to have you as a resource. Being a retired R.N. means you have the technical training that the rest of us don't. Your words give us great comfort and can alleviate many fears.
You are a blessing to us all.
Hugs back!!!!
Take Care
Lily

Lily and Cheryl
Thanks for your kind words! We all are quite a team!

Maudsie

ljt33

maudsie said:

Lily and Cheryl
Thanks for your kind words! We all are quite a team!

Maudsie

New member?
Hi all,

Thanks to all of you for posting your comments. Sadly, I would like to join your club, as my mother (age 72) was recently diagnosed with Stage IV gall bladder cancer (some spreading to omentum, probably liver, but not known if spread to lymph nodes). I have read a lot about it, on this site and others, so I feel that I have a good idea of what she is up against. We have had her see a specialist in Boston, and she was started on Gem/Cis, two-on, one-off, which I think she is tolerating fairly well.

I personally have been a member of CSN since 2008 because that's when I was diagnosed with breast cancer. As a result, I've been thru the surgery, chemo, radiation, etc. cycle, albeit for a cancer with much better odds. I mention this only because I'm pretty knowledgeable about many aspects of the health care system and the various ways to treat cancer. For example, although my cocktail was different than my mom's, I feel as though I am a good resource to her when managing symptoms of chemo, as I have personally experienced many of them.

When I was actively going through treatment, I found online communities to be a great resources. I am hoping to develop the same type of network of people dealing with gall bladder cancer, so that I can help my mother in the best ways possible.

Of course, I too am very encouraged by Lily's long history of dealing with this disease, and hope that for all of us or our loved ones. As I've been reading your posts, I've had a few questions, which I hope you all can comment on. I'm sure I'll have many as time goes on, but I hope to share information too when/if I learn any that is useful.

Questions:
1) Was Gem/Cis the first treatment for others as well?
2) I think some have started adding daily Xeloda -- when/why was this added to your treatment plan?

Thank you for any info you provide,
Linda

ljt33

ljt33 said:

New member?
Hi all,

Thanks to all of you for posting your comments. Sadly, I would like to join your club, as my mother (age 72) was recently diagnosed with Stage IV gall bladder cancer (some spreading to omentum, probably liver, but not known if spread to lymph nodes). I have read a lot about it, on this site and others, so I feel that I have a good idea of what she is up against. We have had her see a specialist in Boston, and she was started on Gem/Cis, two-on, one-off, which I think she is tolerating fairly well.

I personally have been a member of CSN since 2008 because that's when I was diagnosed with breast cancer. As a result, I've been thru the surgery, chemo, radiation, etc. cycle, albeit for a cancer with much better odds. I mention this only because I'm pretty knowledgeable about many aspects of the health care system and the various ways to treat cancer. For example, although my cocktail was different than my mom's, I feel as though I am a good resource to her when managing symptoms of chemo, as I have personally experienced many of them.

When I was actively going through treatment, I found online communities to be a great resources. I am hoping to develop the same type of network of people dealing with gall bladder cancer, so that I can help my mother in the best ways possible.

Of course, I too am very encouraged by Lily's long history of dealing with this disease, and hope that for all of us or our loved ones. As I've been reading your posts, I've had a few questions, which I hope you all can comment on. I'm sure I'll have many as time goes on, but I hope to share information too when/if I learn any that is useful.

Questions:
1) Was Gem/Cis the first treatment for others as well?
2) I think some have started adding daily Xeloda -- when/why was this added to your treatment plan?

Thank you for any info you provide,
Linda

Another question I have is
Another question I have is how long people have done the Gem/Cis regimen and whether you stopped that treatment because it was no longer as effective as others, or if it was stopped because there was no visible cancer, or if there is just a standard length of time that someone can take Gem/Cis before they have to stop.

Just wondering.

Thanks,
Linda

westie66

ljt33 said:

Another question I have is
Another question I have is how long people have done the Gem/Cis regimen and whether you stopped that treatment because it was no longer as effective as others, or if it was stopped because there was no visible cancer, or if there is just a standard length of time that someone can take Gem/Cis before they have to stop.

Just wondering.

Thanks,
Linda

Gallbladder Cancer Treatments
Hi Linda: Welcome to the gallbladder discussion thread. I am so sorry about your mom. I can only anwer one of your questions. I was diagnosed with gallbladder cancer way back in October 2009 (well, not exactly but my GP noted an increase in liver enzymes during regular blood work, ordered a CT scan which showed a mysterious mass between the gallbladder and the liver, and scheduled me for laparoscopic gallbladder surgery which I had in April 2010). The surgeon cut out the gallbladder (full of gallstones), its tumour, and part of the liver where the tumour had penetrated. I ended up in hospital again for 10 days with infection and a burst blood vessel. I found out I had cancer "officially" May 26, 2010 but couldn't start chemo until September when the incision finally healed (with a nice long incisional hernia to boot!). The surgeon tested some nodules on the peritoneum and omentum, all cancerous. But no other cancer visible. I started on gemcitibine/cisplatin in September and immediately had a bad reaction to it and ended up in the hospital with bleeding colon. Had a colonoscopy and was diagnosed with ischemic colitis. I resumed the same chemo treatment but at a reduced amount. The treatment cycle was two on, one off. I had 6 months of chemo (12 treatments). But this regime did not remove the peritoneum nodules. There are only 6 visible ones all less than 13 mm in size. But no other cancers visible, not even in the lymph nodes. The oncologist started me on oxaliplatin/irenotecan/5FU/leucovin (called FOLFOXFIRI) May 17. This is the standard for colon cancer I believe (which I don't have). I have had 4 treatments - lots of side effects whereas I had very few with the GEM/CIS regime - neuropathy, diarrhea, breakage of hair, shaking, etc. so the oncologist reduced the dosage and infusion rate. I don't know how this treatment regime is working because I get my first MRI scan this coming Wednesday. Here's hoping.
As far as I know the GEM/CIS regime is usually 12 treatments but Lily had it for a lot longer. I don't know about others.
Hope this helps.
Cheryl

Lily50

bjs said:

Thanks
Hello Lily and all who post here,

It helpss so much to hear about all of your experiences. I was actually a bit down about my liver "spot" but hearing from several of you that you had similiar things makes me feel better and helps me to view my test results in a more positive light. Lily, you are right that getting the CTs and blood tests is hard. i was surprised at how much i dreaded it this time. I know that I will have to do it every three months, at least, so I have to get used to it!
My oncologist is optimistic about keeping me "going" for a prolonged time but says that this cancer is incurable. that is not my view! I have not given up on surgery down the road or other means to eradicate it. My general practice doctor told me recently not to give up on anything because she thinks that I am doing well!
i have found two very helpful books, one is "Anticancer: A New Way of Life" by David Servan-Schreiber, MD, PhD. I have seen others mention this book and I find it very helpful. The other book is "The Journey through Cancer: Healing and Transforming the Whole Person" by Jeremy Geffen, MD. The author is an oncologist who has worked in integrative programs to combine the best is Western medicine with other healing traditions. I have found that this book is great for the mental and emotional aspects of fighting cancer which we all know are just as important as the physical battles!
Take care,
Betty

Your Welcome!
Hi Betty,

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

Lily50

ljt33 said:

New member?
Hi all,

Thanks to all of you for posting your comments. Sadly, I would like to join your club, as my mother (age 72) was recently diagnosed with Stage IV gall bladder cancer (some spreading to omentum, probably liver, but not known if spread to lymph nodes). I have read a lot about it, on this site and others, so I feel that I have a good idea of what she is up against. We have had her see a specialist in Boston, and she was started on Gem/Cis, two-on, one-off, which I think she is tolerating fairly well.

I personally have been a member of CSN since 2008 because that's when I was diagnosed with breast cancer. As a result, I've been thru the surgery, chemo, radiation, etc. cycle, albeit for a cancer with much better odds. I mention this only because I'm pretty knowledgeable about many aspects of the health care system and the various ways to treat cancer. For example, although my cocktail was different than my mom's, I feel as though I am a good resource to her when managing symptoms of chemo, as I have personally experienced many of them.

When I was actively going through treatment, I found online communities to be a great resources. I am hoping to develop the same type of network of people dealing with gall bladder cancer, so that I can help my mother in the best ways possible.

Of course, I too am very encouraged by Lily's long history of dealing with this disease, and hope that for all of us or our loved ones. As I've been reading your posts, I've had a few questions, which I hope you all can comment on. I'm sure I'll have many as time goes on, but I hope to share information too when/if I learn any that is useful.

Questions:
1) Was Gem/Cis the first treatment for others as well?
2) I think some have started adding daily Xeloda -- when/why was this added to your treatment plan?

Thank you for any info you provide,
Linda

Welcome Linda
Hi Linda,

Welcome to our discussion board! I'm so sorry to hear about your mom. This is a very terrible disease but Hope and Faith will carry you through. I'm so sorry about your own cancer diagnosis, but you are a survivor and that strength will help your mom on her journey. You will be a great resource to her and you realize what a toll this will take on your mom. You will be there to help her every step of the way. I can tell that you love her alot. Knowlege is power, the more informed you are, and the more questions that you can ask on behalf of your mom will be to your and her advantage. You will be a great advocate for her.

As for your questions I orignally started on Gemzar and Carboplatin. I didn't tolerate the Carboplatin well and was switched to Cisplatin. I know that my dosages were sometimes reduced due to low blood cell counts. I started chemo in December 2005 and didn't complete it until March 2007. I had surgery October 13th (Friday the 13th) 2006. The additional chemo after surgery was because the pathology report showed that I still had cancer cells in 6 or 7 of the 14 lymph nodes that they removed. I stayed with that same chemo cocktail through the duration of my treatment as there was shrinkage of my turmors. I always had extra hydration given to me when receiving treatment. Some treatment centers do that automatically and others only when you ask for it. I also had to have a blood transfusion once.

Eating healthy is so important and as you know even when you don't feel like it you have to do the best you can to take care of yourself. Since I had no underlying health problems and I was fairly young (46) at time of diagnosis I was able to withstand the hell that I was put through. Cancer is something you fight or give in to and I wasn't willing to give in. More and more of us are survivors and we will all become a force to be reckoned with. Maybe some others can shed some light on their Xeloda treatment.

Ask us anything you want and we will try to help.

Take Care
Lily

bjs

ljt33 said:

New member?
Hi all,

Thanks to all of you for posting your comments. Sadly, I would like to join your club, as my mother (age 72) was recently diagnosed with Stage IV gall bladder cancer (some spreading to omentum, probably liver, but not known if spread to lymph nodes). I have read a lot about it, on this site and others, so I feel that I have a good idea of what she is up against. We have had her see a specialist in Boston, and she was started on Gem/Cis, two-on, one-off, which I think she is tolerating fairly well.

I personally have been a member of CSN since 2008 because that's when I was diagnosed with breast cancer. As a result, I've been thru the surgery, chemo, radiation, etc. cycle, albeit for a cancer with much better odds. I mention this only because I'm pretty knowledgeable about many aspects of the health care system and the various ways to treat cancer. For example, although my cocktail was different than my mom's, I feel as though I am a good resource to her when managing symptoms of chemo, as I have personally experienced many of them.

When I was actively going through treatment, I found online communities to be a great resources. I am hoping to develop the same type of network of people dealing with gall bladder cancer, so that I can help my mother in the best ways possible.

Of course, I too am very encouraged by Lily's long history of dealing with this disease, and hope that for all of us or our loved ones. As I've been reading your posts, I've had a few questions, which I hope you all can comment on. I'm sure I'll have many as time goes on, but I hope to share information too when/if I learn any that is useful.

Questions:
1) Was Gem/Cis the first treatment for others as well?
2) I think some have started adding daily Xeloda -- when/why was this added to your treatment plan?

Thank you for any info you provide,
Linda

Xeloda
Hi Linda,
I am currently in treatment for locally advanced gallbladder cancer that has spread to my bile duct. I had my gallbladder removed in early March. My oncologist advised six weeks of radiation and daily oral Xeloda. The orginal Xeloda dose caused hand/foot syndrome so it was cut to a half dose towards the end of radiation. I think that some other chemo medications cannot be combined with radiation and my oncologist has great faith in Xeloda and I in him! After my radiation/chemo, i had four weeks off treatment to recover. I am now on Gemzar by infusion and daily Xeloda for two weeks on and one week off for aplanned six months. My oncologist said that other chemo combinations are used but he thinks that this is the best for me.
i hope that this helps. I think that it is good to ask the oncologist lots of questions about the treatment regime chosen. It is so important to have confidence in the doctor and the plan. I wish your mother all the best in her battle and look forward to hearing from you to update us. She is very lucky to have you!
All the best,
Betty

westie66

bjs said:

Xeloda
Hi Linda,
I am currently in treatment for locally advanced gallbladder cancer that has spread to my bile duct. I had my gallbladder removed in early March. My oncologist advised six weeks of radiation and daily oral Xeloda. The orginal Xeloda dose caused hand/foot syndrome so it was cut to a half dose towards the end of radiation. I think that some other chemo medications cannot be combined with radiation and my oncologist has great faith in Xeloda and I in him! After my radiation/chemo, i had four weeks off treatment to recover. I am now on Gemzar by infusion and daily Xeloda for two weeks on and one week off for aplanned six months. My oncologist said that other chemo combinations are used but he thinks that this is the best for me.
i hope that this helps. I think that it is good to ask the oncologist lots of questions about the treatment regime chosen. It is so important to have confidence in the doctor and the plan. I wish your mother all the best in her battle and look forward to hearing from you to update us. She is very lucky to have you!
All the best,
Betty

Xeloda
Yes, I'd certainlhy like to know more about Xeloda. I haven't heard of anyone getting it here in Canada for gallbladder cancer. I'll try to find out more.
Cheryl

maudsie

ljt33 said:

New member?
Hi all,

Thanks to all of you for posting your comments. Sadly, I would like to join your club, as my mother (age 72) was recently diagnosed with Stage IV gall bladder cancer (some spreading to omentum, probably liver, but not known if spread to lymph nodes). I have read a lot about it, on this site and others, so I feel that I have a good idea of what she is up against. We have had her see a specialist in Boston, and she was started on Gem/Cis, two-on, one-off, which I think she is tolerating fairly well.

I personally have been a member of CSN since 2008 because that's when I was diagnosed with breast cancer. As a result, I've been thru the surgery, chemo, radiation, etc. cycle, albeit for a cancer with much better odds. I mention this only because I'm pretty knowledgeable about many aspects of the health care system and the various ways to treat cancer. For example, although my cocktail was different than my mom's, I feel as though I am a good resource to her when managing symptoms of chemo, as I have personally experienced many of them.

When I was actively going through treatment, I found online communities to be a great resources. I am hoping to develop the same type of network of people dealing with gall bladder cancer, so that I can help my mother in the best ways possible.

Of course, I too am very encouraged by Lily's long history of dealing with this disease, and hope that for all of us or our loved ones. As I've been reading your posts, I've had a few questions, which I hope you all can comment on. I'm sure I'll have many as time goes on, but I hope to share information too when/if I learn any that is useful.

Questions:
1) Was Gem/Cis the first treatment for others as well?
2) I think some have started adding daily Xeloda -- when/why was this added to your treatment plan?

Thank you for any info you provide,
Linda

xeloda etc.
Hi Linda -- After my diagnosis and surgery (July 2008) i received xeloda (an oral form of 5-FU) for about 6-8 weeks, concurrent with radiation. Xeloda is commonly used here in the U.S. as part of the GBC treatment regimen. It is a "radio-sensitizer" so it can work especially well when used at the same time as radiation therapy, but is also given alone or with other IV meds (such as Gemzar AKA Gemcitibine). Radiation is not an option for many, only if the cancer is known to be in a limited area small enough for the radiation to target. After the xeloda/radiation, in my case I got IV Gemzar, but not in combo with Cisplatin or Oxcilliplatin as it is often given. Not sure why. As you see, there are slight variations in all our treatments, but they also have much in common. Having Gem/Cis as the first treatment is just fine. In general, I believe, each total treatment might go on for 8-12 weeks, maybe longer, along with blood tests, and then a CT scan might be done to check for effectiveness. If things are working, then, perhaps more of the same chemo. If not so much, then a different chemo is brought in to try. Best of luck to you and your Mom!!!
Maudsie

klnh0126

maudsie said:

ascites
Hi Karen -- I've been away from this board a while so I just want to say hello to you, and Cheryl, and Lily, and all my friends here. I am doing fine. I wanted also to chime in with my two cents about what to do about ascites. Generally, I think, what is being done is an abdominal pericentesis and isn't too big a deal and can really alleviate symptoms. Rather than a stent of some kind, under local anesthesia you get a needle placed briefly into the abdominal cavity and excess abdominal fluid is drawn out, up to a liter or two at a sitting. This can be done in a matter of minutes and doesn't require hospitalization in most cases. It may have to be done again after a while, as more fluid gathers, but it's great for doing now and then and most certainly can give relief. There is no reason to carry this pain and discomfort from something like ascites when there is a fairly simple procedure to keep it under control. Hope this helps.
Big hugs all around to you all!
Maudsie

My Mom
Hello to everyone,

Sadly today I said goodbye and buried my mom. This terrible disease took her life on June 30th. She had one complication after another and went into home hospice for 7 days and then needed hospital based hospice to help manage her terrible symptoms for 6 days until she passed. Her dying process was almost unbearable and I stayed with her til the end. She was a wonderful women and didn't deserve any of this. I will forever miss her!!! My heart goes out to all of you as you battle this disease.

Karen

Lily50

klnh0126 said:

My Mom
Hello to everyone,

Sadly today I said goodbye and buried my mom. This terrible disease took her life on June 30th. She had one complication after another and went into home hospice for 7 days and then needed hospital based hospice to help manage her terrible symptoms for 6 days until she passed. Her dying process was almost unbearable and I stayed with her til the end. She was a wonderful women and didn't deserve any of this. I will forever miss her!!! My heart goes out to all of you as you battle this disease.

Karen

Karen's Mom
Dearest Karen,

I'm so sorry for your loss. Today must have been a very hard day in your life and yet you came to the discussion board to let us all know. Thank you for that. It is never easy to say goodbye.

Your mom is no longer in pain and has gone on to a better place. She fought a good fight and you were there every step of the way to comfort her and support her. She was very proud of you as her daughter and the many memories that you have of your mom you can hold in your heart forever.

Take Care
Lily

SusanCH

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

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

Any help is much appreciated. Susan

bjs

SusanCH said:

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

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

Any help is much appreciated. Susan

welcome
Hi Susan,
I am so sorry that you have joined those of us fighting this cancer but glad that you found our discussion board. When I was first diagnosed back in March, I was very upset that I could not find anyone else with this cancer. It took me a while to find this discussion and I have received so much support from all who post here.
I too have been told that my cancer is inoperable. Although my gallbladder was removed in early March, the cancer in the bile duct cannot be removed-at least for now, as i view it. I am hopeful that the treatments will shrink my cancer enough for surgery to be an option later even if my husband and I have to find a surgeon in another city. Fo far, my radiation and chemo are lowering my tumor markers. My cancer is very small so it does not show up well on CT scans but it is not growing.
From the little I know, I think that each case is different and you should discuss all of your concerns with your medical team. If you want a second opinion, I would certainly get one. It is very important to have confidence in your medical team and treatment plan.
I wish you all the best in this fight and look forward to hearing how you are doing.
Take care,
Betty

westie66

bjs said:

welcome
Hi Susan,
I am so sorry that you have joined those of us fighting this cancer but glad that you found our discussion board. When I was first diagnosed back in March, I was very upset that I could not find anyone else with this cancer. It took me a while to find this discussion and I have received so much support from all who post here.
I too have been told that my cancer is inoperable. Although my gallbladder was removed in early March, the cancer in the bile duct cannot be removed-at least for now, as i view it. I am hopeful that the treatments will shrink my cancer enough for surgery to be an option later even if my husband and I have to find a surgeon in another city. Fo far, my radiation and chemo are lowering my tumor markers. My cancer is very small so it does not show up well on CT scans but it is not growing.
From the little I know, I think that each case is different and you should discuss all of your concerns with your medical team. If you want a second opinion, I would certainly get one. It is very important to have confidence in your medical team and treatment plan.
I wish you all the best in this fight and look forward to hearing how you are doing.
Take care,
Betty

Gallbladder Cancer
Hi Susan: I am another person with gallbladder cancer. Mine was diagnosed way back in October 2009. I had laparoscopic surgery in mid-April to remove the gallbladder and they removed its tumour and part of the liver as well. No evidence of cancer in the stomach or bile duct as the tumour grew out of the gallbladder at the "liver end" rather than the "bile duct" end. But I do have cancerous nodules on the peritoneum - they saw them during the surgery but did not cut them out unfortunately. There is the possibility of surgery down the road but not likely as only two surgeons do this surgery in Canada. My treatment started with cisplatin/gemcitibine two weeks out of three but didn't do much for the peritoneum nodules which are not apparently connected to the blood supply system. The cis/gem treatment ended in January and I started a more rigorous chemo treatment in mid-May - called FOLFOXFIRI (oxaliplatin/irenotecan/5FU on a 42 hour pump). This is a nastier treatment with all sorts of side effects. I have finished my 5th treatment and had an MRI but have not had the results yet. It has worked for people with colon cancer and its spread to the peritoneum. So here's hoping.
I would get another opinion if you can (it is difficult to do here in Ontario so I didn't). I know someone in Saskatchewan who was given a very negative outcome so he went to the Mayo Clinic in Minnesota, had surgery to remove the gallbladder and its cancer and a thorough check to everything else down there. He is doing very very well. From my experience, the removal of the tumour should happen at some point. My tumour was about 7 cm long. I wouldn't recommend the laparoscopic surgery though - not thorough enough and cancer cells can be scraped off during removal. I would recommend they check out the peritoneum and omentum for cancerous nodules which are tiny and hard to detect on scans.
Good luck! Keep us posted!
Cheryl

westie66

bjs said:

welcome
Hi Susan,
I am so sorry that you have joined those of us fighting this cancer but glad that you found our discussion board. When I was first diagnosed back in March, I was very upset that I could not find anyone else with this cancer. It took me a while to find this discussion and I have received so much support from all who post here.
I too have been told that my cancer is inoperable. Although my gallbladder was removed in early March, the cancer in the bile duct cannot be removed-at least for now, as i view it. I am hopeful that the treatments will shrink my cancer enough for surgery to be an option later even if my husband and I have to find a surgeon in another city. Fo far, my radiation and chemo are lowering my tumor markers. My cancer is very small so it does not show up well on CT scans but it is not growing.
From the little I know, I think that each case is different and you should discuss all of your concerns with your medical team. If you want a second opinion, I would certainly get one. It is very important to have confidence in your medical team and treatment plan.
I wish you all the best in this fight and look forward to hearing how you are doing.
Take care,
Betty

Gallbladder Cancer
Hi Susan: I am another person with gallbladder cancer. Mine was diagnosed way back in October 2009. I had laparoscopic surgery in mid-April to remove the gallbladder and they removed its tumour and part of the liver as well. No evidence of cancer in the stomach or bile duct as the tumour grew out of the gallbladder at the "liver end" rather than the "bile duct" end. But I do have cancerous nodules on the peritoneum - they saw them during the surgery but did not cut them out unfortunately. There is the possibility of surgery down the road but not likely as only two surgeons do this surgery in Canada. My treatment started with cisplatin/gemcitibine two weeks out of three but didn't do much for the peritoneum nodules which are not apparently connected to the blood supply system. The cis/gem treatment ended in January and I started a more rigorous chemo treatment in mid-May - called FOLFOXFIRI (oxaliplatin/irenotecan/5FU on a 42 hour pump). This is a nastier treatment with all sorts of side effects. I have finished my 5th treatment and had an MRI but have not had the results yet. It has worked for people with colon cancer and its spread to the peritoneum. So here's hoping.
I would get another opinion if you can (it is difficult to do here in Ontario so I didn't). I know someone in Saskatchewan who was given a very negative outcome so he went to the Mayo Clinic in Minnesota, had surgery to remove the gallbladder and its cancer and a thorough check to everything else down there. He is doing very very well. From my experience, the removal of the tumour should happen at some point. My tumour was about 7 cm long. I wouldn't recommend the laparoscopic surgery though - not thorough enough and cancer cells can be scraped off during removal. I would recommend they check out the peritoneum and omentum for cancerous nodules which are tiny and hard to detect on scans.
Good luck! Keep us posted!
Cheryl

SusanCH

westie66 said:

Gallbladder Cancer
Hi Susan: I am another person with gallbladder cancer. Mine was diagnosed way back in October 2009. I had laparoscopic surgery in mid-April to remove the gallbladder and they removed its tumour and part of the liver as well. No evidence of cancer in the stomach or bile duct as the tumour grew out of the gallbladder at the "liver end" rather than the "bile duct" end. But I do have cancerous nodules on the peritoneum - they saw them during the surgery but did not cut them out unfortunately. There is the possibility of surgery down the road but not likely as only two surgeons do this surgery in Canada. My treatment started with cisplatin/gemcitibine two weeks out of three but didn't do much for the peritoneum nodules which are not apparently connected to the blood supply system. The cis/gem treatment ended in January and I started a more rigorous chemo treatment in mid-May - called FOLFOXFIRI (oxaliplatin/irenotecan/5FU on a 42 hour pump). This is a nastier treatment with all sorts of side effects. I have finished my 5th treatment and had an MRI but have not had the results yet. It has worked for people with colon cancer and its spread to the peritoneum. So here's hoping.
I would get another opinion if you can (it is difficult to do here in Ontario so I didn't). I know someone in Saskatchewan who was given a very negative outcome so he went to the Mayo Clinic in Minnesota, had surgery to remove the gallbladder and its cancer and a thorough check to everything else down there. He is doing very very well. From my experience, the removal of the tumour should happen at some point. My tumour was about 7 cm long. I wouldn't recommend the laparoscopic surgery though - not thorough enough and cancer cells can be scraped off during removal. I would recommend they check out the peritoneum and omentum for cancerous nodules which are tiny and hard to detect on scans.
Good luck! Keep us posted!
Cheryl

Thank you Betty and Cheryl
Thanks for your help Betty and Cheryl. I think I have some research to do this week! Can anyone tell me if they had to visit a surgeon in another city first or is it possible to get a surgeon to give some sort of preliminary determination by just looking at records of CT scans and other tests? I'm trying to avoid the travel costs of going to another city to get an initial opinion. Or do you think it's important to be there in person? So much to learn! I can see how dealing with this cancer easily becomes a part-time job. Oh well, I still have lots to be thankful for, including the relief I feel from finding this discussion group. I also have a wonderful husband and two dog companions who I can lean on.
Susan

westie66

SusanCH said:

Thank you Betty and Cheryl
Thanks for your help Betty and Cheryl. I think I have some research to do this week! Can anyone tell me if they had to visit a surgeon in another city first or is it possible to get a surgeon to give some sort of preliminary determination by just looking at records of CT scans and other tests? I'm trying to avoid the travel costs of going to another city to get an initial opinion. Or do you think it's important to be there in person? So much to learn! I can see how dealing with this cancer easily becomes a part-time job. Oh well, I still have lots to be thankful for, including the relief I feel from finding this discussion group. I also have a wonderful husband and two dog companions who I can lean on.
Susan

You're Welcome!
Hi Susan: I can't help you there as I live in Ontario and where I am there isn't a lot of choice. I would certainly get a 2nd and even 3rd opinion though if you can as some surgeons do a more aggressive surgery than others (mine didn't). They can look over your scans and files and then you should meet with them in person. I'd certainly go for someone who has experience with this type of cancer though. Go for it!
Cheryl

Lauren21

What have you done?
Lily,

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

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

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

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

Thanks, I REALLY look forward to hearing from you!

--Lauren

Lauren21

SusanCH said:

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

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

Any help is much appreciated. Susan

Tumor Marker CA 19-9
Susan,

My mom was just diagnosed, so I do not know a lot about this but our last visit with the oncologist, she told mom that she was going to test for the CA 19-9 marker since no "measurable" disease can be seen on mom's scan and all her other blood work is normal. She said that sometimes the CA 19-9 marker shows up in hepatibiliary cancers, and if its showing with mom's that will give her something to measure her progress by.

Hope that helps.

-- Lauren

bjs

SusanCH said:

Thank you Betty and Cheryl
Thanks for your help Betty and Cheryl. I think I have some research to do this week! Can anyone tell me if they had to visit a surgeon in another city first or is it possible to get a surgeon to give some sort of preliminary determination by just looking at records of CT scans and other tests? I'm trying to avoid the travel costs of going to another city to get an initial opinion. Or do you think it's important to be there in person? So much to learn! I can see how dealing with this cancer easily becomes a part-time job. Oh well, I still have lots to be thankful for, including the relief I feel from finding this discussion group. I also have a wonderful husband and two dog companions who I can lean on.
Susan

Surgery second opinions
Hi Susan,
I too am planning to get second or third opinions on surgery down the road when my second round of chemo is done in December. I hope to get some shrinkage of the bile duct cancer so that my bile duct can be either opened or replaced with a permanent solution instead of the stents which must be replaced every eight weeks or so. I plan to check with surgeons in Seattle where I live. i am lucky to have major cancer centers here. Also, in one of Lily's posts, she put the contact information for the surgeon she used at Stanford. I plan to check with him, in person, if i cannot find a surgeon locally. I don't know if a doctor will give an opinion without seeing the patient. Maybe your oncologist can give you some contacts and talk with one or more surgeons about your condition.
You are so right about this cancer becoming like a job! I am retired and I think of this as my job now. Everything else in my life has taken a backseat to fighting this cancer because, if i lose, i lose everything else anyway. the discussion group is so inspiring and gives me hope and strength.
I will be very interested in what you find out about second opinions.
Take care,
Betty