Gallbladder Cancer - 2012 (Any Stage)

hillaryjoRN

westie66 said:

Gallbladder Cancer
Hi: Interesting to see another gallbladder cancer person having the FOLFOX treatment. I had 12 treatments at first of gemcibitine and cisplatin. No side effects but apparently didn't stabilize the mets to the peritoneum (I had the gallbladder and its tumour removed). I then did 12 treatments of FOLFOXFIRI (oxaliplatin + irenotecan + 5FU pump) and although it was a nasty combination it did seem to stabilize and even shrink some of the peritoneum nodules. I came off it Nov 4 but am back on it again next week. Unfortunately I have to pay for the oxaliplatin here in Ontario.
Cheryl

Thank you both for your
Thank you both for your response. Just what I needed to hear today after meeting with Mom's current oncologist here in WI, who doesn't have experience with Gallbladder cancer (he didn't make us feel very optomisitic), we are scheduled to go to the Mayo clinic next week. I hear they have a phase 2 clinical trial, and am interested in the details.. is anyone else currently participating in a clinical trial? From Mayo we may seak a 3rd opinion..any recommendations?? a physician I work with suggested Ketteran Slon memorial in NY? Thank you all so much! You don't know how wonderful it feels to hear from other people going through this and SURVIVORS!! My prayers go out to you! God is in control!
Hillary

lirok

hillaryjoRN said:

Thank you both for your
Thank you both for your response. Just what I needed to hear today after meeting with Mom's current oncologist here in WI, who doesn't have experience with Gallbladder cancer (he didn't make us feel very optomisitic), we are scheduled to go to the Mayo clinic next week. I hear they have a phase 2 clinical trial, and am interested in the details.. is anyone else currently participating in a clinical trial? From Mayo we may seak a 3rd opinion..any recommendations?? a physician I work with suggested Ketteran Slon memorial in NY? Thank you all so much! You don't know how wonderful it feels to hear from other people going through this and SURVIVORS!! My prayers go out to you! God is in control!
Hillary

Thank You Both for Your
Hillary, I am being treated at Sloane Kettering in NYC. Fantastic hospital. My oncologist is Dr. Eileen O'Reilly. I would highly recommend her. Let me know if I can give you any other info.

All the best and STAY STRONG !!!!!!!!!!!!!!!!

Rocky

hillaryjoRN

lirok said:

Thank You Both for Your
Hillary, I am being treated at Sloane Kettering in NYC. Fantastic hospital. My oncologist is Dr. Eileen O'Reilly. I would highly recommend her. Let me know if I can give you any other info.

All the best and STAY STRONG !!!!!!!!!!!!!!!!

Rocky

called NYC to make an
called NYC to make an appointment today. we are faxing all her info right now! hopefully she can get in asap! Lirok, was your bile duct involved? why the stent?

lirok

hillaryjoRN said:

called NYC to make an
called NYC to make an appointment today. we are faxing all her info right now! hopefully she can get in asap! Lirok, was your bile duct involved? why the stent?

Called NYC
Hillary,

My bile ducts were involved as the tumor grew over them. They were all removed when they did the liver resection. They took part of my large intestine and created new bile ducts. Shortly after the surgery for some reason they closed and they decided to place metal stents in all three of them. I have had them for a year now and no major problems.

My surgeon at Sloane who is BRILLIANT was Yuman Fung. He is a liver specialist. Let me know again if I can help.

Rocky

lirok

hillaryjoRN said:

called NYC to make an
called NYC to make an appointment today. we are faxing all her info right now! hopefully she can get in asap! Lirok, was your bile duct involved? why the stent?

Called NYC
Hillary,

My bile ducts were involved as the tumor grew over them. They were all removed when they did the liver resection. They took part of my large intestine and created new bile ducts. Shortly after the surgery for some reason they closed and they decided to place metal stents in all three of them. I have had them for a year now and no major problems.

My surgeon at Sloane who is BRILLIANT was Yuman Fung. He is a liver specialist. Let me know again if I can help.

Rocky

maudsie

hillaryjoRN said:

Thank you both for your
Thank you both for your response. Just what I needed to hear today after meeting with Mom's current oncologist here in WI, who doesn't have experience with Gallbladder cancer (he didn't make us feel very optomisitic), we are scheduled to go to the Mayo clinic next week. I hear they have a phase 2 clinical trial, and am interested in the details.. is anyone else currently participating in a clinical trial? From Mayo we may seak a 3rd opinion..any recommendations?? a physician I work with suggested Ketteran Slon memorial in NY? Thank you all so much! You don't know how wonderful it feels to hear from other people going through this and SURVIVORS!! My prayers go out to you! God is in control!
Hillary

Hi Hillary
Hi Hillary, I haven't been here for a while and would like to give a shout out to Cheryl and Rocky and all the people participating on this thread......and to Lily, of course. I was diagnosed with GBC T3N0M0 almost four years ago. The T3 is due some of the GB cancer invading adjacent liver tissue, all successfully removed with surgery. I am doing fine now. At Mayo or Sloane Kettering or about ANYwhere it will be advised that your mom have radiation and chemo. Although she appears to be in a rare group that has caught this cancer early, and therefore has an EXCELLENT chance of beating this thing, with this aggressive cancer you can never be too sure, so you go for it! And it sounds like you are doing all the right things. BRAVO, and stay strong!

maudsie

hillaryjoRN said:

Thank you both for your
Thank you both for your response. Just what I needed to hear today after meeting with Mom's current oncologist here in WI, who doesn't have experience with Gallbladder cancer (he didn't make us feel very optomisitic), we are scheduled to go to the Mayo clinic next week. I hear they have a phase 2 clinical trial, and am interested in the details.. is anyone else currently participating in a clinical trial? From Mayo we may seak a 3rd opinion..any recommendations?? a physician I work with suggested Ketteran Slon memorial in NY? Thank you all so much! You don't know how wonderful it feels to hear from other people going through this and SURVIVORS!! My prayers go out to you! God is in control!
Hillary

Hi Hillary
Sorry, this got posted twice

westie66

maudsie said:

Hi Hillary
Sorry, this got posted twice

Gallbladder Cancer Protocols
Hi all: I would certainly echo Maudie's comments. Get the best gallbladder cancer person you can get (and I hear Sloane Kettering is one of the best - we even hear about it here in Canada!). I unfortunately did not have the most complete surgery I should have - only laparoscopic removal of the gallbladder, its tumour, and part of the liver bed. I was diagnosed in 2009 and had the surgery in April 2010. Unfortunately the cancer had already spread to the peritoneum and that couldn't have been removed anyways during regular surgery. I was told I couldn't have radiation as my liver was already compromised (whatever that means!). As Lily says time and again, you may have to fight for treatment because gallbladder cancer is kind of rare. But get it. Murray, another Canadian with gallbladder cancer, couldn't be treated where he lives and so went to the Mayo Clinic in Minnesota and has excellent treatment there (the "right" surgery) and still has excellent care as they assess his follow-up scans. Good luck!
Cheryl

hillaryjoRN

westie66 said:

Gallbladder Cancer Protocols
Hi all: I would certainly echo Maudie's comments. Get the best gallbladder cancer person you can get (and I hear Sloane Kettering is one of the best - we even hear about it here in Canada!). I unfortunately did not have the most complete surgery I should have - only laparoscopic removal of the gallbladder, its tumour, and part of the liver bed. I was diagnosed in 2009 and had the surgery in April 2010. Unfortunately the cancer had already spread to the peritoneum and that couldn't have been removed anyways during regular surgery. I was told I couldn't have radiation as my liver was already compromised (whatever that means!). As Lily says time and again, you may have to fight for treatment because gallbladder cancer is kind of rare. But get it. Murray, another Canadian with gallbladder cancer, couldn't be treated where he lives and so went to the Mayo Clinic in Minnesota and has excellent treatment there (the "right" surgery) and still has excellent care as they assess his follow-up scans. Good luck!
Cheryl

well, mom said they just
well, mom said they just confused her at the Mayo clinic today. basically said... its up to you what kind of treatment you want. stating there is NO research to prove that chemo or ratiation makes any difference in the outcome! We definatley want to have aggressive treatment, you cant look back a year or so from now and wonder if things would have worked out differently if you had treatment. but now we just don't know what kind of treatment to persue! The oncologist said he was going to give my parents some "sobering statistics" and my dad stopped him and said "don't please, we are focusing on the positive!" good for him! I guess they said they disagreed with the other pathology report and call is a T2 N0 M0, stage 3. I know stage 3 is not good, but am hopeful that surgery remmoved all of the cancer!! is anyone else stage 3?? what does this mean?? how do we decide what to do??

lourdes726

hillaryjoRN said:

well, mom said they just
well, mom said they just confused her at the Mayo clinic today. basically said... its up to you what kind of treatment you want. stating there is NO research to prove that chemo or ratiation makes any difference in the outcome! We definatley want to have aggressive treatment, you cant look back a year or so from now and wonder if things would have worked out differently if you had treatment. but now we just don't know what kind of treatment to persue! The oncologist said he was going to give my parents some "sobering statistics" and my dad stopped him and said "don't please, we are focusing on the positive!" good for him! I guess they said they disagreed with the other pathology report and call is a T2 N0 M0, stage 3. I know stage 3 is not good, but am hopeful that surgery remmoved all of the cancer!! is anyone else stage 3?? what does this mean?? how do we decide what to do??

Hi Hilary,
Why are they
Hi Hilary,
Why are they calling your mom's cancer stage 3? That doesn't correspond to T2 M0 N0? Stage 3 usually means it has gone through the wall or has gone into the nearby lymph nodes? I had T2 M0 N0 R0 and was told it was stage 2 and it used to be stage 1b according to the older version of the cancer manual used for staging. I also hated hearing those survival numbers from doctors, they spitted it out like it meant nothing. One oncologist told me it ALWAYS comes back. My surgeon said I had a 70 percent chance and Dana Farber said 50/50. It seems like they all say something diffferent. I have spent alot of time on the internet and I have seen many studies that report increased survival for T2 M0 N0 if a liver resection is done as opposed to just gallbladder removal. My case was presented to a tumor board and I also sought other opionions and no one seemed to agree on whether chemo/radiation was a good option. However, Dana Farber doctors did suggest I have chemo./radiation because there were no data to prove it didn't help. My local oncologist also said she felt it was best to do something , rather than nothing and have regrets later. I do know a lady that went to Mayo for T2 M0 N0 gallbladder cancer and was recommended that she hasve chemo. , but not radiation. She is almost two years cancer free and is doing well. I am glad to hear that you and her husband are advocating for her. This is a lonely disease and it is hard to find others who have experienced this type of cancer. I wish more survivors of gallbladder cancer would share their stories.
Take care,
Lourdes

lourdes726

hillaryjoRN said:

well, mom said they just
well, mom said they just confused her at the Mayo clinic today. basically said... its up to you what kind of treatment you want. stating there is NO research to prove that chemo or ratiation makes any difference in the outcome! We definatley want to have aggressive treatment, you cant look back a year or so from now and wonder if things would have worked out differently if you had treatment. but now we just don't know what kind of treatment to persue! The oncologist said he was going to give my parents some "sobering statistics" and my dad stopped him and said "don't please, we are focusing on the positive!" good for him! I guess they said they disagreed with the other pathology report and call is a T2 N0 M0, stage 3. I know stage 3 is not good, but am hopeful that surgery remmoved all of the cancer!! is anyone else stage 3?? what does this mean?? how do we decide what to do??

Sorry posted twice :}

Sorry posted twice :}

westie66

lourdes726 said:

Sorry posted twice :}

Sorry posted twice :}

Stagae IV Gallbladder Cancer
Hi: I have stage IV gallbladder cancer (but no lymph node involvement so far - but mets to the liver and peritoneum). Don't let them give you those stats that say you have only 2-3 months, no one survives, blah blah blah. Get the best treatment you can from a noted gallbladder oncologist. Surgery to remove the gallbladder, its tumour, and adjacent tissues is paramount. The real controversial thing is the follow-up treatment. I couldn't have radiation because my liver was compromised whatever that means. The standard chemo treatment seems to be cisplatin + gemcitibine. Getting other kinds of chemo is difficult, at least here in Canada. I have had and am having again folfirinox (oxaliplatin + irenotecan + 5FU). There are too few of us for a clinical trial so the chemical people simply don't care. Problems start with peritoneum seeding. Difficult to detect and hard to treat. Make sure they check that.
Cheryl

hillaryjoRN

westie66 said:

Stagae IV Gallbladder Cancer
Hi: I have stage IV gallbladder cancer (but no lymph node involvement so far - but mets to the liver and peritoneum). Don't let them give you those stats that say you have only 2-3 months, no one survives, blah blah blah. Get the best treatment you can from a noted gallbladder oncologist. Surgery to remove the gallbladder, its tumour, and adjacent tissues is paramount. The real controversial thing is the follow-up treatment. I couldn't have radiation because my liver was compromised whatever that means. The standard chemo treatment seems to be cisplatin + gemcitibine. Getting other kinds of chemo is difficult, at least here in Canada. I have had and am having again folfirinox (oxaliplatin + irenotecan + 5FU). There are too few of us for a clinical trial so the chemical people simply don't care. Problems start with peritoneum seeding. Difficult to detect and hard to treat. Make sure they check that.
Cheryl

I read the Path report from
I read the Path report from here in wausau and it said T2 N0 M0 stage 2. however we sent to slides to Mayo and they said it is T2 but stage 3! I don't know??!! I wish I could have been at her appt. but I will question it. The margins were negative and there is no metastisis so I don't know how you can change the stage?? We are still wondering if we should go to NYC. appt is set for the 20th. however we are worried to delay treatment any longer. she had surgery on the 16th. so it's been almost a month with no treatment?? do you think it would be ok to wait till the 20th? how long did you all wait before you started treatment??? thank you all so much for your support and HOPE... you all are so helpful!! and I pray for everyone of you! -Hillary

hillaryjoRN

hillaryjoRN said:

I read the Path report from
I read the Path report from here in wausau and it said T2 N0 M0 stage 2. however we sent to slides to Mayo and they said it is T2 but stage 3! I don't know??!! I wish I could have been at her appt. but I will question it. The margins were negative and there is no metastisis so I don't know how you can change the stage?? We are still wondering if we should go to NYC. appt is set for the 20th. however we are worried to delay treatment any longer. she had surgery on the 16th. so it's been almost a month with no treatment?? do you think it would be ok to wait till the 20th? how long did you all wait before you started treatment??? thank you all so much for your support and HOPE... you all are so helpful!! and I pray for everyone of you! -Hillary

She did have radical surgery
She did have radical surgery to remove the gall bladder, margin of the liver and surrounding lymphnodes (16 of them). nodes were hegative and liver margin was negative, so I thought that was good news, however the mayo oncologist told her that "it comes back" and people who recommend treatment don't understand the disease and its progression! I think he's wrong! you all are proof that treatment helps!!

lourdes726

hillaryjoRN said:

She did have radical surgery
She did have radical surgery to remove the gall bladder, margin of the liver and surrounding lymphnodes (16 of them). nodes were hegative and liver margin was negative, so I thought that was good news, however the mayo oncologist told her that "it comes back" and people who recommend treatment don't understand the disease and its progression! I think he's wrong! you all are proof that treatment helps!!

Hillary,
Sounds like your
Hillary,
Sounds like your mother had an excellent outcome to her surgery. She had negative margins and negative lymph nodes. That is the best news a person can receive with this diagnosis. I had the same T2 diagnosis and was staged at stage 2 by several doctors. Did the doctors at Mayo see something else in the slides? Seems way strange and the doctor seems very discouraging. I think he is wrong as well and it DOES NOT ALWAYS COME BACK! T2 M0 N0 has a good chance of survival. My surgeon was very optimistic about my chances after my liver resection and did much research about my stage. He definitely said it does not always come back and that a liver resection can be curative surgery for gallbladder cancer. I started chemo. pump/radiation about 51/2 weeks after my resection, followed by 4 more months of iv chemo. I know you don't want to delay starting treatment, but perhaps a doctor who is more positive will lift your mother's spirits. I never went back to the first doctor that told me it always comes back and I felt much better after traveling to Dana Farber for another opinion as they were very kind and positive. My current oncologist in my town is not too touchy feely, but she doesn't give grim statistics either. Although it is hard to find GB survivors they are out there. I correspond with others who have more years cancer free than I do. Sounds like your mom wants to be aggressive, so she should find a doctor that will work with her and be positive. I have heard they have excellent doctors in NY and I would go if at all possible. Most of us have had GEMZAR with or without Cisplatin for chemo and radiation with 5fu or xeloda following liver resection. This cancer is rare and there is little interest in the medical community in research or treatment options so you have to advocate for the best treatment options. I think your mother should feel very encouraged, she has had the tumor removed , she is free of cancer and her lymph nodes were all clear. Bless you for helping your mother, this is a frightening experience and without family I don't think I could of faced those initial months. Lourdes

westie66

lourdes726 said:

Hillary,
Sounds like your
Hillary,
Sounds like your mother had an excellent outcome to her surgery. She had negative margins and negative lymph nodes. That is the best news a person can receive with this diagnosis. I had the same T2 diagnosis and was staged at stage 2 by several doctors. Did the doctors at Mayo see something else in the slides? Seems way strange and the doctor seems very discouraging. I think he is wrong as well and it DOES NOT ALWAYS COME BACK! T2 M0 N0 has a good chance of survival. My surgeon was very optimistic about my chances after my liver resection and did much research about my stage. He definitely said it does not always come back and that a liver resection can be curative surgery for gallbladder cancer. I started chemo. pump/radiation about 51/2 weeks after my resection, followed by 4 more months of iv chemo. I know you don't want to delay starting treatment, but perhaps a doctor who is more positive will lift your mother's spirits. I never went back to the first doctor that told me it always comes back and I felt much better after traveling to Dana Farber for another opinion as they were very kind and positive. My current oncologist in my town is not too touchy feely, but she doesn't give grim statistics either. Although it is hard to find GB survivors they are out there. I correspond with others who have more years cancer free than I do. Sounds like your mom wants to be aggressive, so she should find a doctor that will work with her and be positive. I have heard they have excellent doctors in NY and I would go if at all possible. Most of us have had GEMZAR with or without Cisplatin for chemo and radiation with 5fu or xeloda following liver resection. This cancer is rare and there is little interest in the medical community in research or treatment options so you have to advocate for the best treatment options. I think your mother should feel very encouraged, she has had the tumor removed , she is free of cancer and her lymph nodes were all clear. Bless you for helping your mother, this is a frightening experience and without family I don't think I could of faced those initial months. Lourdes

Gallbladder Cancer
Yup, I agree with Lourdes!
Cheryl

Monarch64

Catching up...
Hi gang,

Don't know what happened by my old username was locked out. So, after several days (weeks) of trying to get it resolved, I just decided to go with a new name as close to my "old" name as I could.

It's still me...Charmi...just with a new name.

Now, where were we? LOL

Rocky - you have such a wonderful spirit. You and your family are in my family's prayers every day. Sorry you've had some setbacks but sounds like things are moving in the right direction. Remember...you and Mom...winning this battle!

More in a minute, need to reread some posts because I know there's lots I want to comment on.

Charmi

Monarch64

Monarch64 said:

Catching up...
Hi gang,

Don't know what happened by my old username was locked out. So, after several days (weeks) of trying to get it resolved, I just decided to go with a new name as close to my "old" name as I could.

It's still me...Charmi...just with a new name.

Now, where were we? LOL

Rocky - you have such a wonderful spirit. You and your family are in my family's prayers every day. Sorry you've had some setbacks but sounds like things are moving in the right direction. Remember...you and Mom...winning this battle!

More in a minute, need to reread some posts because I know there's lots I want to comment on.

Charmi

Still catching up...
Welcome to all the new members. I'm sorry you've had to come here. But, I'm sure glad you found us.

Donna - How'd you mom's surgery go yesterday? Did they do the resection? Positive thoughts and prayers being sent your family's way. (And to everyone here!)

Lucy - not sure if anyone answered your question about scans. My mom was diagnosed with T2N0M0. She had a scan a few weeks post-treatment. She's had 2 scans at 3-month intervals since then. We got excellent news today so her next scan will be in 6 months. After that, she will wait 12 months before the next scan. And, when that one comes back good (and we absolutely believe it will!), she will only have scans on an as-needed basis.

Charmi

Monarch64

Monarch64 said:

Catching up...
Hi gang,

Don't know what happened by my old username was locked out. So, after several days (weeks) of trying to get it resolved, I just decided to go with a new name as close to my "old" name as I could.

It's still me...Charmi...just with a new name.

Now, where were we? LOL

Rocky - you have such a wonderful spirit. You and your family are in my family's prayers every day. Sorry you've had some setbacks but sounds like things are moving in the right direction. Remember...you and Mom...winning this battle!

More in a minute, need to reread some posts because I know there's lots I want to comment on.

Charmi

Hillary...
Hi Hillary,

(This is the 3rd time I've tried to get this post written. I keep getting booted off so I'm going to type, save, edit, save, edit, save... until I get this complete so bear with me.)

There is good news in your post...the fact that you are confused/getting confusing info is a good thing. It means that your mom was diagnosed at an early stage. There isn't a lot of protocol developed for Stage 1 or Stage 2 as gallbladder cancer is usually caught at later stages.

My mom was diagnosed at T2N0M0 as well. The surgeon was very grim. The oncologist kept referring to it as "stage 4" because of the statistics associated with gbc. The radiation oncologist was happy as a clam - told us how blessed we were and that we had the best chance of a "cure" because of the stage. He kept referring to it as Stage 1.

The oncologist recommended continuous infusion 5FU (5 weeks) and 28 sessions of radiation. The radiation oncologist agreed 100%. So, that's what Mom did. After treament was complete and Mom got a clear follow-up scan, the oncologist recommended a course of Gem/Ox. The radiation onc suggested that Mom didn't need to proceed with the further treatment.

He printed a doc regarding treatment protocols for gbc. It was from the cancer division of the National Institutes of Health. It had definitive recommendations for Stage 3 and Stage 4. But, it said that there were no steadfast recommendations for Stage 1 or Stage 2. It said that while there were indications of an increased incidence of positive outcomes with chemo/radiation, there was not enough data to recommend any treatment beyond that. It stated that there were just not enough cases recorded of the treatment results of early stage treatment as more often than not, the cancer was caught beyond the early stages. It also had a note to doctors asking that if they had patients in early stages, that they report treatment, results, etc so that definitive recommendations could be developed for early-stage gbc. So, that's where the confusion in the medical community comes from. Frustrating? yes. But also a good thing in a round-about way.

fyi - Mom opted to not proceed with further treatment as she had had some problems during the first protocol. (blood clot, atrial fib.) The radiation onc was confident in her decision. And, the oncologist has has come to agree with it as well. Of course, if Mom were to need further chemo in the future, she would proceed with it.

If you have any questions from a daughter's perspective, please ask. I've walked this journey and would be happy to help you in your journey in any way I can. (Look a litte futher up this thread under posts by Monarch - my old screen name. I posted the tools I put together for documenting everything. I have approached this as a project. And, it has proven to be very helpful on my occasions.)

Best wishes to you and your family!

Charmi

hillaryjoRN

westie66 said:

Gallbladder Cancer
Yup, I agree with Lourdes!
Cheryl

Mom has decided to have
Mom has decided to have treatment here in Wisconsin, she feels comfortable with the oncologist and feels she will do better mentally and physically if she is home by us. She will have radiation with 5fu, (not sure how long) followed by Gemcitobine. That sounds like what most people here have gone through. She is in much better spirits today, as she feels we finally have a plan, and can start fighting! Her oncologist also said he would consult with a dr. In NYC, that made us feel better to. It's hard to imagine that the cancer can come back, and sometimes the worry consumes you, but we just keep praying! Hillary