Gallbladder Cancer - 2012 (Any Stage)
Comments
-
Hillary,hillaryjoRN said:I was reading moms
I was reading moms physicians notes from Mayo. They say she had a T2 NO M0 but a stage 3. I don't understand the stage thing! She has no mets or no liver involvement. Online I found something about the staging means how the cells look like compared to normal gallbladder tissue. Just wondering if anyone else was "staged" And what it means
How the cells
Hillary,
How the cells looked compared to normal gallbladder cells usually refers to the grading of the cancer, such as well differianted, etc.
Everythng I have read points to T2N0 M0 as stage 2, the AJCC Cancer Staging Manul has T2 N0 M0 gallbladder cancer as stage 2 in the current manual. I wonder if it it was just a mis ake in the report. Without liver involvement or spread to nodes it doesn't add up to stage 3. I wonder if you could leave a message with the doctor at Mayo or an email and ask them why this is stage 3 and not stage 2? They should be able to answer your question or maybe your mom's local oncologist can answer this question. I would be interested in knowing why they are calling it stage 3, doesn"t seem correct.
Lourdes0 -
I think the dr. Ment grade,lourdes726 said:Hillary,
How the cells
Hillary,
How the cells looked compared to normal gallbladder cells usually refers to the grading of the cancer, such as well differianted, etc.
Everythng I have read points to T2N0 M0 as stage 2, the AJCC Cancer Staging Manul has T2 N0 M0 gallbladder cancer as stage 2 in the current manual. I wonder if it it was just a mis ake in the report. Without liver involvement or spread to nodes it doesn't add up to stage 3. I wonder if you could leave a message with the doctor at Mayo or an email and ask them why this is stage 3 and not stage 2? They should be able to answer your question or maybe your mom's local oncologist can answer this question. I would be interested in knowing why they are calling it stage 3, doesn"t seem correct.
Lourdes
I think the dr. Ment grade, not stage, or maybe I read it wrong. I know it did not invade the serosa or any surrounding tissue so it is a stage 2. But what does the grade really mean? Just that it doesn't look like normal gallbladder tissue? ( well no kiddin it's cancer!) mom starts treatment on Tuesday!! Keep the prayers going!! Hope everything is going well for everyone! Tomorrow we celebrate my daughter Amelia's 1st birthday, and I trust that God will let her grandma "rara" be around to celebrate many more with her! Hillary0 -
Tumor GradehillaryjoRN said:I was reading moms
I was reading moms physicians notes from Mayo. They say she had a T2 NO M0 but a stage 3. I don't understand the stage thing! She has no mets or no liver involvement. Online I found something about the staging means how the cells look like compared to normal gallbladder tissue. Just wondering if anyone else was "staged" And what it means
I am not a medical professional. I know someone with gallbladder cancer.
hillaryjoRN asked about tumor grade. Her April 2 post said that the tumor is an adenocarcinoma. The grade is determined after looking at the cells under a microscope. I think that the grade ranges from 1 - 4. Look in the Mayo doctor's notes for something like "invasive grade 3 (of 4) adenocarcinoma".
* grade 1 (low grade) cancer cells look more like normal gallbladder tissue, and are less likely to grow fast and spread quickly.
* grade 4 (high grade) cancer cells look really abnormal, and are more likely to grow fast and spread quickly.
* grade 2 and grade 3 are in-between.
When you read about grade, you may see the terms "well-differentiated" and "poorly differentiated". "Differentiation" refers to how closely the cancer cells look like normal gallbladder tissue cells under a microscope. Well differentiated is usually a lower grade (looks more normal), while poorly differentiated is usually a higher grade (looks more abnormal).
It is preferable to have low grade, well-differentiated cancer cells because they are believed to have less aggressive behaviour. High grade, poorly differentiated cancer cells are believed to have more aggressive behaviour.0 -
staginghillaryjoRN said:I think the dr. Ment grade,
I think the dr. Ment grade, not stage, or maybe I read it wrong. I know it did not invade the serosa or any surrounding tissue so it is a stage 2. But what does the grade really mean? Just that it doesn't look like normal gallbladder tissue? ( well no kiddin it's cancer!) mom starts treatment on Tuesday!! Keep the prayers going!! Hope everything is going well for everyone! Tomorrow we celebrate my daughter Amelia's 1st birthday, and I trust that God will let her grandma "rara" be around to celebrate many more with her! Hillary
I was treated at the Mayo Clinic, and my cancer was staged like this
ajcc T3 N1 M0 stage 3B with an invasive grade 3(of 4) adenocarcinoma
Murray0 -
Lourdes, you rock!!!!!! Ilourdes726 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
Lourdes, you rock!!!!!! I have known you from early in your diagnosis, and how far you have come! You now have not only vastly increased knowledge about GBC, but ...best of all... increased confidence in the FACT that this disease is SURVIVABLE. Yes it is, and your comments to Hillary were right on the money.
Bravo!
xox Maudsie0 -
Glad to find you- Thanks for giving me hope!curriewalla said:Tumor Grade
I am not a medical professional. I know someone with gallbladder cancer.
hillaryjoRN asked about tumor grade. Her April 2 post said that the tumor is an adenocarcinoma. The grade is determined after looking at the cells under a microscope. I think that the grade ranges from 1 - 4. Look in the Mayo doctor's notes for something like "invasive grade 3 (of 4) adenocarcinoma".
* grade 1 (low grade) cancer cells look more like normal gallbladder tissue, and are less likely to grow fast and spread quickly.
* grade 4 (high grade) cancer cells look really abnormal, and are more likely to grow fast and spread quickly.
* grade 2 and grade 3 are in-between.
When you read about grade, you may see the terms "well-differentiated" and "poorly differentiated". "Differentiation" refers to how closely the cancer cells look like normal gallbladder tissue cells under a microscope. Well differentiated is usually a lower grade (looks more normal), while poorly differentiated is usually a higher grade (looks more abnormal).
It is preferable to have low grade, well-differentiated cancer cells because they are believed to have less aggressive behaviour. High grade, poorly differentiated cancer cells are believed to have more aggressive behaviour.
Hi All! I hate to have to be here, but I am overjoyed to come across this group! My 54-year old mother was recently diagnosed with gallbladder cancer…. seems to have spread to her bile duct and there are “flecks” all across the surface of her liver… so no surgery for her. My mom is super healthy, fit and, like all of you, the news came as a great shock. The GI doc has put in a stent and we are now waiting for her bilirubin levels to get down so we can start chemo. Since we are waiting anyways, I am coping with the shock but researching like a madwoman. We were told surgery would never be an option and she would be on chemo forever…. but my mom is my best friend and she is one strong, determined woman- we do not take “no” as an answer. Your stories have given me the hope I was searching for the past few weeks. I couldn't thank you all enough.
We are in the Chicago area and I feel like I am having a hard time finding someone to guide me to places I should go or people I should talk to. I have met two oncologists, who do specialize in GI and are lovely people, but I feel like I am interviewing for a CEO for my mom’s life and I would like to find someone as relentless as I am. Does anyone have any recommendations for the Chicago area? Or are from Chicago and found they were better off at another location? Any guidance for this daughter is greatly appreciated.0 -
Gallbladder CancerKristina916 said:Glad to find you- Thanks for giving me hope!
Hi All! I hate to have to be here, but I am overjoyed to come across this group! My 54-year old mother was recently diagnosed with gallbladder cancer…. seems to have spread to her bile duct and there are “flecks” all across the surface of her liver… so no surgery for her. My mom is super healthy, fit and, like all of you, the news came as a great shock. The GI doc has put in a stent and we are now waiting for her bilirubin levels to get down so we can start chemo. Since we are waiting anyways, I am coping with the shock but researching like a madwoman. We were told surgery would never be an option and she would be on chemo forever…. but my mom is my best friend and she is one strong, determined woman- we do not take “no” as an answer. Your stories have given me the hope I was searching for the past few weeks. I couldn't thank you all enough.
We are in the Chicago area and I feel like I am having a hard time finding someone to guide me to places I should go or people I should talk to. I have met two oncologists, who do specialize in GI and are lovely people, but I feel like I am interviewing for a CEO for my mom’s life and I would like to find someone as relentless as I am. Does anyone have any recommendations for the Chicago area? Or are from Chicago and found they were better off at another location? Any guidance for this daughter is greatly appreciated.
Hi: I can't answer your question about where to go for advice/treatment as I'm a Canadian. Gallbladder cancer isn't that common. I know the surgeons at the Mayo clinic in Rochester did a wonderful job on a fellow canadian with gallbladder cancer. I also hear rave reviews about Sloan kettering in New York. I think because this cancer is rare that your mom may be fine in the Chicago area (after all it is a huge city) but could benefit from a second opinion at the known "experts" in this field (e.g. at Sloan Kettering). I'm sure others on this discussion board will help there.
But I just wondered if your mom had her gallbladder and its cancer out during surgery? or that the surgeons wouldn't do the surgery because she already has mets to other places? or if the tumour is too big (i.e. extends out of the gallbladder to say the liver)? Those that have survived the longest did have the gallbladder, its tumour, and a lot of other things surgically removed before chemo began. It can be difficult convincing a surgeon to do this if there are already mets; but as Lily50 says, you just have to be persistent and aggressive. There aren't a whole bunch of surgeons in the States that will do the complete surgery that is needed. I didn't have it unfortunately but did have the gallbladder and its tumour removed. Your mom is only 54 so should have a good chance.
The standard chemo treatment for gallbladder cancer is gemcitibine + cisplatin (or carboplatin if cisplatin can't be tolerated). That didn't work for me as I have mets to the peritoneum and liver but what might be working is something called folfirinox (thinking outside the standard chemo box for sure!).
Anyways, keep us posted. I'm sure you'll get a flood of responses re treatment centres and
options.
Cheryl0 -
Stage IV gallbladder cancer I'm 32 years old!!!westie66 said:Gallbladder Cancer
Hi: I can't answer your question about where to go for advice/treatment as I'm a Canadian. Gallbladder cancer isn't that common. I know the surgeons at the Mayo clinic in Rochester did a wonderful job on a fellow canadian with gallbladder cancer. I also hear rave reviews about Sloan kettering in New York. I think because this cancer is rare that your mom may be fine in the Chicago area (after all it is a huge city) but could benefit from a second opinion at the known "experts" in this field (e.g. at Sloan Kettering). I'm sure others on this discussion board will help there.
But I just wondered if your mom had her gallbladder and its cancer out during surgery? or that the surgeons wouldn't do the surgery because she already has mets to other places? or if the tumour is too big (i.e. extends out of the gallbladder to say the liver)? Those that have survived the longest did have the gallbladder, its tumour, and a lot of other things surgically removed before chemo began. It can be difficult convincing a surgeon to do this if there are already mets; but as Lily50 says, you just have to be persistent and aggressive. There aren't a whole bunch of surgeons in the States that will do the complete surgery that is needed. I didn't have it unfortunately but did have the gallbladder and its tumour removed. Your mom is only 54 so should have a good chance.
The standard chemo treatment for gallbladder cancer is gemcitibine + cisplatin (or carboplatin if cisplatin can't be tolerated). That didn't work for me as I have mets to the peritoneum and liver but what might be working is something called folfirinox (thinking outside the standard chemo box for sure!).
Anyways, keep us posted. I'm sure you'll get a flood of responses re treatment centres and
options.
Cheryl
Hello Everyone,
May 2011 at the age of 31 years old I was diagnosed with stage IV gallbladder cancer and it already spread to my liver. I've been on chemo from June to Feb 2012. Things were looking well. MRI showed the tumors shrunk over 50%. March 2012 I have cancer in my lungs now. I'm starting Y-90 on Wednesday May 2, 2012 to treat my liver. Doctor inform me that is my liver goes than I won't be able to have chemo. Doctor gave me 7 months to live and his goal is to get me to December. I go to Emory Winship Cancer Institute in Atlanta, Georgia. I want to live and I want to make sure my husband and I are getting all the iinformation. I have a 6year old daughter name Madison and a 3 year old daughter Myla. Any suggesstions!!!!!!!!!!!!!0 -
Gallbladder Cancermrookard2011 said:Stage IV gallbladder cancer I'm 32 years old!!!
Hello Everyone,
May 2011 at the age of 31 years old I was diagnosed with stage IV gallbladder cancer and it already spread to my liver. I've been on chemo from June to Feb 2012. Things were looking well. MRI showed the tumors shrunk over 50%. March 2012 I have cancer in my lungs now. I'm starting Y-90 on Wednesday May 2, 2012 to treat my liver. Doctor inform me that is my liver goes than I won't be able to have chemo. Doctor gave me 7 months to live and his goal is to get me to December. I go to Emory Winship Cancer Institute in Atlanta, Georgia. I want to live and I want to make sure my husband and I are getting all the iinformation. I have a 6year old daughter name Madison and a 3 year old daughter Myla. Any suggesstions!!!!!!!!!!!!!
Hi: As you can see from my last post, I too have Stage IV gallbladder cancer that spread to my liver and the peritoneum. I did have surgery to remove the gallbladder and its tumour and where the tumour had entered the liver. I'm not sure if your gallbladder and its tumour were removed right at the beginning (that would have been a good time to remove the liver thing but I didn't get that done either). Some people on this board have had radiation to treat the liver tumour with gallbladder cancer. Remember that it is still gallbladder cancer if it spread from the gallbladder tumour. I am not familiar with Y-90 as I live in Canada. My advice is to get the best advice you can get. There aren't a lot of gallbladder cancer specialists in North America it seems but there are good ones for sure at Sloan Kettering in New York. It would hurt to get a second opinion re treatment and you'll like have to be pretty aggressive to get that (read Lily50's bio). Your doctor's goal should be to get you beyond that. I was given 2-3 months in April 2010 but here I am. I had the standard chemo regime of cisplatin + gemcitibine for gallbladder but that didn't work well. I've now finished 12 treatment of something called folfirinox and am starting that regime again. It did seem to help in shrinking or at least stabilizing the tumours. I am inoperable so chemo is palliative.
Cheryl0 -
Gallbladder Cancermrookard2011 said:Stage IV gallbladder cancer I'm 32 years old!!!
Hello Everyone,
May 2011 at the age of 31 years old I was diagnosed with stage IV gallbladder cancer and it already spread to my liver. I've been on chemo from June to Feb 2012. Things were looking well. MRI showed the tumors shrunk over 50%. March 2012 I have cancer in my lungs now. I'm starting Y-90 on Wednesday May 2, 2012 to treat my liver. Doctor inform me that is my liver goes than I won't be able to have chemo. Doctor gave me 7 months to live and his goal is to get me to December. I go to Emory Winship Cancer Institute in Atlanta, Georgia. I want to live and I want to make sure my husband and I are getting all the iinformation. I have a 6year old daughter name Madison and a 3 year old daughter Myla. Any suggesstions!!!!!!!!!!!!!
Hi: As you can see from my last post, I too have Stage IV gallbladder cancer that spread to my liver and the peritoneum. I did have surgery to remove the gallbladder and its tumour and where the tumour had entered the liver. I'm not sure if your gallbladder and its tumour were removed right at the beginning (that would have been a good time to remove the liver thing but I didn't get that done either). Some people on this board have had radiation to treat the liver tumour with gallbladder cancer. Remember that it is still gallbladder cancer if it spread from the gallbladder tumour. I am not familiar with Y-90 as I live in Canada. My advice is to get the best advice you can get. There aren't a lot of gallbladder cancer specialists in North America it seems but there are good ones for sure at Sloan Kettering in New York. It wouldn't hurt to get a second opinion re treatment and you'll likely have to be pretty aggressive to get that (read Lily50's bio). Your doctor's goal should be to get you beyond that. I was given 2-3 months in April 2010 but here I am. I had the standard chemo regime of cisplatin + gemcitibine for gallbladder but that didn't work well. I've now finished 12 treatment of something called folfirinox and am starting that regime again. It did seem to help in shrinking or at least stabilizing the tumours. I am inoperable so chemo is palliative.
Cheryl0 -
Invasive grade 3. I justhaugy said:staging
I was treated at the Mayo Clinic, and my cancer was staged like this
ajcc T3 N1 M0 stage 3B with an invasive grade 3(of 4) adenocarcinoma
Murray
Invasive grade 3. I just read the report. It is stage 2 T2N0M0. mom is doing great with radiation and chemo so far! one week in. she is on her second week and still able to watch her granddaughters!!0 -
KristinaKristina916 said:Glad to find you- Thanks for giving me hope!
Hi All! I hate to have to be here, but I am overjoyed to come across this group! My 54-year old mother was recently diagnosed with gallbladder cancer…. seems to have spread to her bile duct and there are “flecks” all across the surface of her liver… so no surgery for her. My mom is super healthy, fit and, like all of you, the news came as a great shock. The GI doc has put in a stent and we are now waiting for her bilirubin levels to get down so we can start chemo. Since we are waiting anyways, I am coping with the shock but researching like a madwoman. We were told surgery would never be an option and she would be on chemo forever…. but my mom is my best friend and she is one strong, determined woman- we do not take “no” as an answer. Your stories have given me the hope I was searching for the past few weeks. I couldn't thank you all enough.
We are in the Chicago area and I feel like I am having a hard time finding someone to guide me to places I should go or people I should talk to. I have met two oncologists, who do specialize in GI and are lovely people, but I feel like I am interviewing for a CEO for my mom’s life and I would like to find someone as relentless as I am. Does anyone have any recommendations for the Chicago area? Or are from Chicago and found they were better off at another location? Any guidance for this daughter is greatly appreciated.
We live in
Kristina
We live in Wisconsin, while doing research for my mother I found a Dr. Leslie at Rush in Chicago, I believe he "speacializes" in Gallbladder cancer. we had an appt. with him but never went as mom decided to have treatment locally. I too wanted my mother to go where ever to see "the best" our local oncologist was more than willing to consult with other "specialists" in gallbladder cancer. so you have that as an option too. I've found that the treatment for gallbladder cancer is pretty much the same wherever you go, as far as chemo/radiation goes. but surgery is another issue and you may have to travel to find someone willing/able to due the surgery. I know what you are going through! I'm so sorry and will pray for your family! Hillary0 -
KristinaKristina916 said:Glad to find you- Thanks for giving me hope!
Hi All! I hate to have to be here, but I am overjoyed to come across this group! My 54-year old mother was recently diagnosed with gallbladder cancer…. seems to have spread to her bile duct and there are “flecks” all across the surface of her liver… so no surgery for her. My mom is super healthy, fit and, like all of you, the news came as a great shock. The GI doc has put in a stent and we are now waiting for her bilirubin levels to get down so we can start chemo. Since we are waiting anyways, I am coping with the shock but researching like a madwoman. We were told surgery would never be an option and she would be on chemo forever…. but my mom is my best friend and she is one strong, determined woman- we do not take “no” as an answer. Your stories have given me the hope I was searching for the past few weeks. I couldn't thank you all enough.
We are in the Chicago area and I feel like I am having a hard time finding someone to guide me to places I should go or people I should talk to. I have met two oncologists, who do specialize in GI and are lovely people, but I feel like I am interviewing for a CEO for my mom’s life and I would like to find someone as relentless as I am. Does anyone have any recommendations for the Chicago area? Or are from Chicago and found they were better off at another location? Any guidance for this daughter is greatly appreciated.
We live in
Kristina
We live in Wisconsin, while doing research for my mother I found a Dr. Leslie at Rush in Chicago, I believe he "speacializes" in Gallbladder cancer. we had an appt. with him but never went as mom decided to have treatment locally. I too wanted my mother to go where ever to see "the best" our local oncologist was more than willing to consult with other "specialists" in gallbladder cancer. so you have that as an option too. I've found that the treatment for gallbladder cancer is pretty much the same wherever you go, as far as chemo/radiation goes. but surgery is another issue and you may have to travel to find someone willing/able to due the surgery. I know what you are going through! I'm so sorry and will pray for your family! Hillary0 -
Just Starting Out...
Hi Lily and everyone:
Great posts, very helpful to us as we learn about gallbladder cancer and its treatments.
My wife was diagnosed with gallbladder cancer 2 months ago, after her gallbladder was removed for unrelated reasons. The cancer was found post-op, and was T3 but hadn't seemed to go too far yet, but had gone through the wall of the gallbladder. 3 weeks ago she had the operation where they remove two sections of liver and some surrounding lymph nodes. The surgeon found two cancerous nodules on the liver, but luckily they were on the sections he was going to remove during the operation, so they came out. 16 lymph nodes were removed and biopsied, and they were all negative. There are no other known tumors/growths, so the docs are now going after microscopic cells/clusters to prevent any growth/spread.
So that part went well! But now we're on to the chemo and radiation, and there is a lot of conflicting info out there, since this type of cancer is so rare and largely unstudied. So, as you might suspect, my wife is struggling with two paths of treatment, and trying to quickly decide on which to take.
The first is from the Seattle Cancer Care Alliance, and consists mainly of gem/cisplat for two weeks, with a week off, for X cycles, followed by local radiation of the abdomen. Scans throughout with the goal of a cure/remission.
The other alternative is from the Cancer Treatment and Wellness Center, where they suggest low-dose gem/cisplat continuous chemo, introvenous vitamin C, and DCA. While introvenous Vit C and DCA seem hopeful in early trials, there doesn't seem to be sound evidence that they work yet, as also seems to be the case with low-dose chemo. These guys also did not mention radiation as an option at all.
So, knowing that this is an agressive disease, we know that she's currently in a good position and that the first round of treatment will be very important. But it's hard for her to pick which direction to take. If it were me, I'd likely go conventional via the CAncer Care Alliance - but of course it's not my decision and she needs 110% buy-in to her therapy.
I wanted to ask if anyone on the thread has tried the low-dose gem/cisplat, the introvenous Vitamin C, or the DCA, and if so, what you thought. Or, of you've got info against those things, what that is. And, if you've had the "conventional" regiment and it worked, maybe you wrestled with the same confusion over these "alternative" therapies?
Thank you!
Kevin0 -
Gallbladder Cancerkevin409 said:Just Starting Out...
Hi Lily and everyone:
Great posts, very helpful to us as we learn about gallbladder cancer and its treatments.
My wife was diagnosed with gallbladder cancer 2 months ago, after her gallbladder was removed for unrelated reasons. The cancer was found post-op, and was T3 but hadn't seemed to go too far yet, but had gone through the wall of the gallbladder. 3 weeks ago she had the operation where they remove two sections of liver and some surrounding lymph nodes. The surgeon found two cancerous nodules on the liver, but luckily they were on the sections he was going to remove during the operation, so they came out. 16 lymph nodes were removed and biopsied, and they were all negative. There are no other known tumors/growths, so the docs are now going after microscopic cells/clusters to prevent any growth/spread.
So that part went well! But now we're on to the chemo and radiation, and there is a lot of conflicting info out there, since this type of cancer is so rare and largely unstudied. So, as you might suspect, my wife is struggling with two paths of treatment, and trying to quickly decide on which to take.
The first is from the Seattle Cancer Care Alliance, and consists mainly of gem/cisplat for two weeks, with a week off, for X cycles, followed by local radiation of the abdomen. Scans throughout with the goal of a cure/remission.
The other alternative is from the Cancer Treatment and Wellness Center, where they suggest low-dose gem/cisplat continuous chemo, introvenous vitamin C, and DCA. While introvenous Vit C and DCA seem hopeful in early trials, there doesn't seem to be sound evidence that they work yet, as also seems to be the case with low-dose chemo. These guys also did not mention radiation as an option at all.
So, knowing that this is an agressive disease, we know that she's currently in a good position and that the first round of treatment will be very important. But it's hard for her to pick which direction to take. If it were me, I'd likely go conventional via the CAncer Care Alliance - but of course it's not my decision and she needs 110% buy-in to her therapy.
I wanted to ask if anyone on the thread has tried the low-dose gem/cisplat, the introvenous Vitamin C, or the DCA, and if so, what you thought. Or, of you've got info against those things, what that is. And, if you've had the "conventional" regiment and it worked, maybe you wrestled with the same confusion over these "alternative" therapies?
Thank you!
Kevin
Hi Kevin: I don't know anything about the low-dose treatment unfortunately. I went the traditional route - gemcitibine + cisplatin - but because I had already had spread to the peritoneum that treatment didn't work on the spread (but likely kept the beast at bay in other areas). I had the two weeks on and 1 week off treatment and it went well - no problems at all. I was on reduced cisplatin though (70%)as I did have a problem with colon bleeding on full strength. Some folks tolerate carboplatin better than cisplatin as it is weaker. For some reason, here in Canada radiation with gallbladder is not offered, something about a compromised liver. You might read Lily50's bio - she had very aggressive chemo, then surgery, then chemo again (but not radiation). I know for a time she had chemo every day. I'm glad they got out the spots on the liver at the same time and the lymph nodes. Wish I had had that option.
My treatment now as I'm not eligible for surgery is something called folfirinox (oxaliplatin + irenotecan + 5FU pump) which is used in colon cancer and pancreatic cancer treatment. I don't have those but it is those nasties on the peritoneum that are a problem and this treatment seems to work.
I hope someone can report on the low dose treatment for gallbladder cancer. I do know someone who is doing that treatment in Vienna, Austria (a gentle chemo regime she calls it).
Cheryl0 -
Thanks hillaryjoRN- I willhillaryjoRN said:Kristina
We live in
Kristina
We live in Wisconsin, while doing research for my mother I found a Dr. Leslie at Rush in Chicago, I believe he "speacializes" in Gallbladder cancer. we had an appt. with him but never went as mom decided to have treatment locally. I too wanted my mother to go where ever to see "the best" our local oncologist was more than willing to consult with other "specialists" in gallbladder cancer. so you have that as an option too. I've found that the treatment for gallbladder cancer is pretty much the same wherever you go, as far as chemo/radiation goes. but surgery is another issue and you may have to travel to find someone willing/able to due the surgery. I know what you are going through! I'm so sorry and will pray for your family! Hillary
Thanks hillaryjoRN- I will make sure to look into that doctor. I have been researching any and all possible treatment options- I have even looked into alternative herbal therapies. I am pretty desperate to find whatever I can out there.
To westie66- thank you for replying as well. My mom has not had her gallbladder removed. She was scheduled for a whipple procedure, but they found mets on the surface of her liver and did not operate. She now has a stent in her bile duct- we need to wait for her bile to cooperate before we can start any treatment- very frustrating! I believe she will be starting on the same regime you are on currently- I believe there are 3 chemo drugs and hope the effects will not be too hard on her.
I guess my next step will be to find a surgeon who is able and willing to help us. Thank you for all your advice and you are all in my prayers.0 -
Gallbladder Cancerwestie66 said:Gallbladder Cancer
Hi Kevin: I don't know anything about the low-dose treatment unfortunately. I went the traditional route - gemcitibine + cisplatin - but because I had already had spread to the peritoneum that treatment didn't work on the spread (but likely kept the beast at bay in other areas). I had the two weeks on and 1 week off treatment and it went well - no problems at all. I was on reduced cisplatin though (70%)as I did have a problem with colon bleeding on full strength. Some folks tolerate carboplatin better than cisplatin as it is weaker. For some reason, here in Canada radiation with gallbladder is not offered, something about a compromised liver. You might read Lily50's bio - she had very aggressive chemo, then surgery, then chemo again (but not radiation). I know for a time she had chemo every day. I'm glad they got out the spots on the liver at the same time and the lymph nodes. Wish I had had that option.
My treatment now as I'm not eligible for surgery is something called folfirinox (oxaliplatin + irenotecan + 5FU pump) which is used in colon cancer and pancreatic cancer treatment. I don't have those but it is those nasties on the peritoneum that are a problem and this treatment seems to work.
I hope someone can report on the low dose treatment for gallbladder cancer. I do know someone who is doing that treatment in Vienna, Austria (a gentle chemo regime she calls it).
Cheryl
Hello to all! I was posting in last years blog, but have not posted for a while. But I am reading all the new posts and it gives me great encouragement. We need to share information because even the specialists don’t have a lot of personal experience since gallbladder cancer is so rare.
I consider 2011 my hard year and hoping 2012 is much better. I was diagnosed with gallbladder cancer after my initial gallbladder surgery Feb 24, 2011. An ultrasound noted my gallbladder looked suspicious, but my surgeon convinced me there was nothing to worry about because this cancer was so rare. Ha! I had a T2 and the cancer seemed to originate on a polyp. With additional staining, they found isolated tumor cells in the lymph node next to the gallbladder, which the surgeon had also removed. According to AJCC 2010; that would be a T2 N0 (+) M0 (that plus is for the isolated tumor cells because no one knows its significance). Of course this bought me the second surgery of liver resection and lymphadenectomy (10 more lymph nodes). This all came back negative. I spent my summer doing chemo (the Gemzar/cisplat combo at full dose). I hated it but I got through it. I did not do radiation. Initially I sort of decided to retire after reading all the terrible statistics (thinking if I was only going to live a couple of years that I might as well enjoy some relaxation). After chemo was over and I started to feel better, I got bored at home. I had 2 clear scans (a CT and an MRI.... who know which one is best ☺). I have so many surgical clips in me that next time they want to do a 4 way liver CT protocol of the abdomen (I guess to check the area with all the clips better). I live in the Seattle area and felt I had a great surgeon at the University of WA. I returned to work 3 days per week. I have been feeling good, but I get “scaniety” when it come time for another scan. Those old statistics need to change because surgeries and treatments are getting better and the articles just keep recycling the old statistics! Blessing to all of you for sharing your stories because even stage IV can have good outcomes; Lilly is a great testament to that! By the way, I need to try that supplement for tingling in fingers and toes (cisplat chemo)
The best to all of you who are fighting this battle! Jean0 -
Dad with unresectable GBC
Dear friends,
My dad 73) was diagnosed last summer with unresectable GBC. It had already spread to his liver and bile ducts, and when they tried to resect it they found during the operation that the spread was too large. Since then he has had two courses of chemo which kept the growth of the cancer in check. He also has a biliary stent which is functioning for the time being.
Without an operation, his case is terminal. Yet for now he is doing well, keeping as active and fit as possible, still walking up hills and cycling his bike. He is very brave.
I am struggling to find any information about what we should expect as his disease progresses. Does anyone know of any useful information about end of life or last stages of this cancer? Are there any recent statistics on survival times for non-resected cancers? He is now 10 months since diagnosis, and 12 months since first symptoms. His liver function is still fine, thank goodness. And are there any dedicated GBC sites or charities?
Thank you so much for any responses. It is so difficult to find information about this cancer.
Katja0 -
non resectable GBCkatja72 said:Dad with unresectable GBC
Dear friends,
My dad 73) was diagnosed last summer with unresectable GBC. It had already spread to his liver and bile ducts, and when they tried to resect it they found during the operation that the spread was too large. Since then he has had two courses of chemo which kept the growth of the cancer in check. He also has a biliary stent which is functioning for the time being.
Without an operation, his case is terminal. Yet for now he is doing well, keeping as active and fit as possible, still walking up hills and cycling his bike. He is very brave.
I am struggling to find any information about what we should expect as his disease progresses. Does anyone know of any useful information about end of life or last stages of this cancer? Are there any recent statistics on survival times for non-resected cancers? He is now 10 months since diagnosis, and 12 months since first symptoms. His liver function is still fine, thank goodness. And are there any dedicated GBC sites or charities?
Thank you so much for any responses. It is so difficult to find information about this cancer.
Katja
69 year old man with non-resectable GBC with spread to bile duct and both sides liver. Also, I have a stent (with questionable function). But, bile and liver function currently in normaL range. I AM JUST ABOUT READY TO START RADIATION AND OR CHEMOTHERAPY. Started feeling ill in early March 2012. My major symptoms are fatigue, insomnia, general body aches, and intermittent pain/pressure in upper right abdomen. If I develope any additional information, I will gladly share it with you.............Skip0 -
Palliative Treatment Gallbladder Cancerskip10 said:non resectable GBC
69 year old man with non-resectable GBC with spread to bile duct and both sides liver. Also, I have a stent (with questionable function). But, bile and liver function currently in normaL range. I AM JUST ABOUT READY TO START RADIATION AND OR CHEMOTHERAPY. Started feeling ill in early March 2012. My major symptoms are fatigue, insomnia, general body aches, and intermittent pain/pressure in upper right abdomen. If I develope any additional information, I will gladly share it with you.............Skip
Hi: There are a number of us on this discussion board who either got the gallbladder and its tumour out but it had already spread to other sites like the peritoneum or liver or bile duct, or who had surgery but nothing surgically could be done. Thus, chemo appears to be palliative only (so I was told anyways). My chemo regime of gemcitibine + cisplatin didn't stop progression of the mets in the peritoneum or liver but nothing else appeared which is good. I am now on folfirinox (the standard treatment for pancreatic cancer which I don't have) - my previous 12 treatments showed stability under this treatment. Not sure what else there is if this stops working. The big problem is the peritoneum spread as it doesn't respond well to chemo.
I don't have any symptoms yet (my surgery was April 2010) - they are all from the chemo.
I have known several people who were caregivers to husbands with gallbladder cancer that couldn't have surgery and couldn't take the chemo. I'm not sure though how to ask them to relate what they went through. I went through it with them via emails. Unfortunately most people diagnosed with gallbladder cancer are in the late stages and haven't lasted long - that isn't us! Treatments are prolonging quality life now.
Cheryl0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.8K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 309 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 396 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 792 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 237 Multiple Myeloma
- 7.1K Ovarian Cancer
- 61 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.5K Prostate Cancer
- 1.2K Rare and Other Cancers
- 538 Sarcoma
- 730 Skin Cancer
- 653 Stomach Cancer
- 191 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.8K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards