Gallbladder Cancer Stage 4

Lily50

MandyCHK said:

To: Lily, maudsie and westie66
Thank you so much for the supports from maudsie and westie66. your messages are well noted. Yes, mum has been (sometimes only) also taking Ensure as supplement when she lost her apetite and realising that she really needs to consume something otherwise her stomach would ache again and maintain her nutrition. so she would have Ensure and maybe half a slice of bread.

Yes westie66, the nurse from the clinc reminds us of the "cold" side effect. in Hong Kong, now is spring and the weather is around 22-28 degrees and she still feesl cold when she takes a shower and has 3 layers of clothes.

She told us last nite and she felt better since the injections on 1 April 2011, which is good and a great relief.

also, she couldn't sleep at nite and she is now on sleeping pills.

Lily, the more i think about your message last night the more inspiring it looks in relation to your successful operation, your successful story stayed in my mind all nite. I fully understand that it depends on different person's situation, however, I still think i should ask you. OK, I know we live in Hong Kong, however, with the not-so-easy-to-give-up spirit and with HOPE and FAITH, I wonder if you could in any way sending me your operation doctor information and details and I wonder if i can courier mum's medical report and history for his / her consideration to see if an operation is still feasible. my family and I are looking forward to hearing from you in relation thereto.

Lastly, one more piece of information, in July 2010 when mum was diagnoised the cancer, the doctor told us that if mum refused chemo, it will last 4-6 months and if she did, it will last for a further 4-6 months. I wonder if the stage IV still covers its various sub-stage thereunder? Since mum was 61 years last year and does it mean the age of the patient and the actual sub-stage of the cancer designate the length of her remaining life time by the doctor?

heaps of love and blessings to you all here.
mandy

Mandy's Mum
Hi Mandy,

Sorry it has taken me so long to respond, it was a very busy week. Thanks to Maudsie and and Cheryl for their great input.
I'll try and answer some of the questions you asked me in the two previous posts to the best of my ability.
I too had a major loss of appetite and felt like I had morning sickness that lasted all day long. I'm sure besides the chemo the pain pills and the Xanax added to the nausea. I just tried to snack all day long. Healthy snacks, lean meat and smoothies of course.
I really can't answer the question as to why I was able to have the surgery and your mum couldn't. I do know that I was young (46) and didn't really have any other health issues. There was a time that I heard numerous "No's" regarding the surgery. I don't know exactly what made the surgeon change his mind after refusing to do it twice before. I don't know if some of the factor's regarding my case were the catalyst or if the relationship between my oncologist and my surgeon was the catalyst. Or the combination of both. There is really no way for me to find out but for whatever reason everything finally came together for me, after quite a long time.
No one ever wants to lose their Hope and Faith but when your mum is called home then that is the way that it is and we have to accept that even though we may not like it. You can tell by your posts that you love your mum very much and only want the best for her. You are a continuous source of love and support for your mum. She knows that in her heart and as a mom myself I know that we never want to be a burden to our children.

My surgeon's name is:
Howard Reber, MD
Specialty Surgery
Hospital Affiliation Ronald Reagan UCLA Medical Center
State License Number C37087
Contact (310) 825-4976
Email Address hreber@surgery.medsch.ucla.edu

He is assoicated with The Jonsson Comprehensive Cancer Center.
http://www.cancer.ucla.edu
Check out this website first, it has lots of good information.

I think that alot of the statistics regarding timeframes take age and patients overall health into consideration.

Hope you and your mum are doing well and I'll talk to you soon.
Take Care
Lily

Lily50

alexinla said:

Mother with Stage 4
Hi to all of you (some of whom I have been luck enough to meet on other boards - Maudsie

My mother has Stage 4 GBC, and starts Gemzar/Cisplatin next week for a recurrence in one lymph node. She's consulted with UCLA and UCSF, and is having her treatment in Monterey, CA. I'll be sharing as much information as I can as my family embarks on this journey. I really do believe the medical community is turning the corner on treating, and managing, this dreadful disease, and our loved ones are much better equipped to fight this disease than they were even 2 years ago.

Thanks to all of you for your inspiration.

My mothers brief history:

Jan 2010 diagnosed
Jan 2010 cholystectomy (UCLA)
May 2010 Whipple (UCLA, Dr, Reber - the best) after more cancer discover in her bile duct inside pancreas
Great path report postwhipple (clean margins, clean lymph nodes)
March 2011 confirmed recurrence in 1 lymph node (2cm well circumscribed)
April 19, 2011 Begins Gemzar Cisplatin

The shock is horrible, and the reaction from doctors is even worse... there's just no easy way for them to say 'stage 4'... but I'm convinced that even metastatic cancer is now a manageable chronic disease , not a death sentence (as Lily has proven!). Science is now on our side.

Looking forward to sharing great stories of successfull treatments!

Alex

Alex's Mom
Hi Alex,

Welcome!!!

I'm so sorry to hear about your mom's recurrence. It is a true statement that this is quite a journey and you have to have patience. Gemzar and Cisplatin was my chemo cocktail also. I had chemo first then surgery, then additional chemo because 4 of my lymph nodes that they removed still had cancer cells in them. I think that is a very true statement, there seems to be more of an awareness for GBC.

I have to add that I had a radical cholystectomy at UCLA with a team of surgeons headed by Howard Reber - the best. He told me No the first two times that I saw him but then Yes the third time. He isn't the most compassionate doctor that I have ever met but he is the best in his field.

I think that there are many doctors whom have become so jaded with their experiences that they aren't willing to look outside of the box and can no longer be compassionate. That is so sad.

Let us know how it is going for your Mom and you.
Take Care
Lily

tdover

Lily50 said:

Mandy's Mum
Hi Mandy,

Sorry it has taken me so long to respond, it was a very busy week. Thanks to Maudsie and and Cheryl for their great input.
I'll try and answer some of the questions you asked me in the two previous posts to the best of my ability.
I too had a major loss of appetite and felt like I had morning sickness that lasted all day long. I'm sure besides the chemo the pain pills and the Xanax added to the nausea. I just tried to snack all day long. Healthy snacks, lean meat and smoothies of course.
I really can't answer the question as to why I was able to have the surgery and your mum couldn't. I do know that I was young (46) and didn't really have any other health issues. There was a time that I heard numerous "No's" regarding the surgery. I don't know exactly what made the surgeon change his mind after refusing to do it twice before. I don't know if some of the factor's regarding my case were the catalyst or if the relationship between my oncologist and my surgeon was the catalyst. Or the combination of both. There is really no way for me to find out but for whatever reason everything finally came together for me, after quite a long time.
No one ever wants to lose their Hope and Faith but when your mum is called home then that is the way that it is and we have to accept that even though we may not like it. You can tell by your posts that you love your mum very much and only want the best for her. You are a continuous source of love and support for your mum. She knows that in her heart and as a mom myself I know that we never want to be a burden to our children.

My surgeon's name is:
Howard Reber, MD
Specialty Surgery
Hospital Affiliation Ronald Reagan UCLA Medical Center
State License Number C37087
Contact (310) 825-4976
Email Address hreber@surgery.medsch.ucla.edu

He is assoicated with The Jonsson Comprehensive Cancer Center.
http://www.cancer.ucla.edu
Check out this website first, it has lots of good information.

I think that alot of the statistics regarding timeframes take age and patients overall health into consideration.

Hope you and your mum are doing well and I'll talk to you soon.
Take Care
Lily

Mother-In-Law
Hi,

After losing almost 40 pounds since the beginning of the year my mother-in-law (who just turned 66 two weeks ago) was finally convinced to go to our family doctor about 4 weeks age. Since then she has had multiple tests including several scans, an endoscopy, xray of lungs, mri, ct guided biopsy of adrenal gland and pet scan. Additionally, they did nuclear testing on biopsy.

After talking to the oncologist they were sure that the primary origin was either the lungs or pancreas. When she went back yesterday to discuss the final test results we were all shocked at the diagnosis, including the doctor, of stage iv gallbladder cancer that involves the bile duct and spots on her liver, lungs, adreanal gland and lymph nodes. Since her first doctors visit a month ago she has lost another 18 pounds.

She is supposed to start chemo this coming Monday that includes Gemzar and Carboplatin. The first week she go one time and receive both medication, the second week she will go one time and receive one medication and then will off on week three. They are planning on doing this treatment three times and then rerunning the tests to see if the cancer has shrunk at all.

After reading what everyone else's posts I am wondering if the recommended treatment is aggressive enough. We are still in shock and don't know anyone who has ever suffered from gallbladder cancer.

Does anyone have any recommendations for oncologists in the Atlanta area?

Thank you,
Tina

westie66

tdover said:

Mother-In-Law
Hi,

After losing almost 40 pounds since the beginning of the year my mother-in-law (who just turned 66 two weeks ago) was finally convinced to go to our family doctor about 4 weeks age. Since then she has had multiple tests including several scans, an endoscopy, xray of lungs, mri, ct guided biopsy of adrenal gland and pet scan. Additionally, they did nuclear testing on biopsy.

After talking to the oncologist they were sure that the primary origin was either the lungs or pancreas. When she went back yesterday to discuss the final test results we were all shocked at the diagnosis, including the doctor, of stage iv gallbladder cancer that involves the bile duct and spots on her liver, lungs, adreanal gland and lymph nodes. Since her first doctors visit a month ago she has lost another 18 pounds.

She is supposed to start chemo this coming Monday that includes Gemzar and Carboplatin. The first week she go one time and receive both medication, the second week she will go one time and receive one medication and then will off on week three. They are planning on doing this treatment three times and then rerunning the tests to see if the cancer has shrunk at all.

After reading what everyone else's posts I am wondering if the recommended treatment is aggressive enough. We are still in shock and don't know anyone who has ever suffered from gallbladder cancer.

Does anyone have any recommendations for oncologists in the Atlanta area?

Thank you,
Tina

Mother in Law with Gallbladder Stage IV
Hi Tina: I know it is a terrible shock and hard to bear. The Gemzar and Carboplatin regime seems to be one standard but most of us even in Canada have had the gemzar with cisplatin (a more aggressive chemical with more severe side effects for some) both together for 2 weeks then the 3rd week "off". Lily had even more aggressive treatment - chemo before surgery, surgery, then chemo again - but her last chemo regime was every day for 4 days for I think 3 months with cisplain and gemzar (in Canada it is called gemiticibine). I didn't have too many adverse effects from the cisplatin and I'm almost 68. A positive attitude is very important. I live in Canada and so can't comment on oncologists in the Atlanta area. One thing to check for is the presence of "seeds" - nodules on the peritoneum and omentum.
Cheryl

Lily50

tdover said:

Mother-In-Law
Hi,

After losing almost 40 pounds since the beginning of the year my mother-in-law (who just turned 66 two weeks ago) was finally convinced to go to our family doctor about 4 weeks age. Since then she has had multiple tests including several scans, an endoscopy, xray of lungs, mri, ct guided biopsy of adrenal gland and pet scan. Additionally, they did nuclear testing on biopsy.

After talking to the oncologist they were sure that the primary origin was either the lungs or pancreas. When she went back yesterday to discuss the final test results we were all shocked at the diagnosis, including the doctor, of stage iv gallbladder cancer that involves the bile duct and spots on her liver, lungs, adreanal gland and lymph nodes. Since her first doctors visit a month ago she has lost another 18 pounds.

She is supposed to start chemo this coming Monday that includes Gemzar and Carboplatin. The first week she go one time and receive both medication, the second week she will go one time and receive one medication and then will off on week three. They are planning on doing this treatment three times and then rerunning the tests to see if the cancer has shrunk at all.

After reading what everyone else's posts I am wondering if the recommended treatment is aggressive enough. We are still in shock and don't know anyone who has ever suffered from gallbladder cancer.

Does anyone have any recommendations for oncologists in the Atlanta area?

Thank you,
Tina

Tina's Mother-In-Law
Hi Tina,

Welcome to our discussion board! I'm so sorry that this disease has come into your lives. It isn't a well known cancer but in the last 5 years there has been more and more discussions about it. I too lost 35 lbs before I went to the doctor in 2005. At the time for me I just thought I was doing so well on Weight Watchers (getting healthy), boy was I wrong. I was in Stage IV also and was inoperable at that time. After 10 months of chemo I had my surgery and an additional 3 months of chemo. It is over 5 years and I'm still here with plenty to say.

At least you now have a diagnosis and can proceed with the recommended treatment plan. I too started out with Gemzar and Carboplatin. I didn't tolerate the Carboplatin well so I was switched to Cisiplatin. I was on an extremely aggressive treatment plan. I went 4 days a week for 4-6 hours for two weeks and then had a week off. The off weeks I received red and white blood cell shots so that I could receive chemo the following week. They will adjust her chemo treatments according to how well she does. The oncologists have protocols but every patient is different. A factor in my aggressive treatment might have been that I was 46 years old and had no underlying medical issues.
I don't know of anyone off the top of my head in Atlanta but I check my contact list for you. Stay positive and have Hope and Faith.

Take Care
Lily

bjs

tdover said:

Mother-In-Law
Hi,

After losing almost 40 pounds since the beginning of the year my mother-in-law (who just turned 66 two weeks ago) was finally convinced to go to our family doctor about 4 weeks age. Since then she has had multiple tests including several scans, an endoscopy, xray of lungs, mri, ct guided biopsy of adrenal gland and pet scan. Additionally, they did nuclear testing on biopsy.

After talking to the oncologist they were sure that the primary origin was either the lungs or pancreas. When she went back yesterday to discuss the final test results we were all shocked at the diagnosis, including the doctor, of stage iv gallbladder cancer that involves the bile duct and spots on her liver, lungs, adreanal gland and lymph nodes. Since her first doctors visit a month ago she has lost another 18 pounds.

She is supposed to start chemo this coming Monday that includes Gemzar and Carboplatin. The first week she go one time and receive both medication, the second week she will go one time and receive one medication and then will off on week three. They are planning on doing this treatment three times and then rerunning the tests to see if the cancer has shrunk at all.

After reading what everyone else's posts I am wondering if the recommended treatment is aggressive enough. We are still in shock and don't know anyone who has ever suffered from gallbladder cancer.

Does anyone have any recommendations for oncologists in the Atlanta area?

Thank you,
Tina

Hope
Hello Tina,
i am am so sorry for your mother-in-law and your whole family's having to go through this. I was diagnosed in March with gallbladder cancer that had spread to my bile duct. i had my gallbladder removed and have been undergoing radiation and oral chemo with Xeloda for six weeks. Then i will have a month off before another chemo regimen for six months or so. I am relatively fortunate in that the cancer has not spread beyond the bile duct so it could be treated with radiation. We talked to two oncologists before choosing one. We chose largely on the basis of recommendations from my doctors. I live in Seattle so am not familiar with the Atlanta area but in such a big city you should have lots of choices I hope. I think one of the main factors in choosing an oncologist and a cancer center is to have someone familiar with this rare cancer and other digestive cancers. It seems that each type of cancer is different and requires a different treatment.
I will be thinking of your family.
Betty

MandyCHK

Lily50 said:

Mandy's Mum
Hi Mandy,

Sorry it has taken me so long to respond, it was a very busy week. Thanks to Maudsie and and Cheryl for their great input.
I'll try and answer some of the questions you asked me in the two previous posts to the best of my ability.
I too had a major loss of appetite and felt like I had morning sickness that lasted all day long. I'm sure besides the chemo the pain pills and the Xanax added to the nausea. I just tried to snack all day long. Healthy snacks, lean meat and smoothies of course.
I really can't answer the question as to why I was able to have the surgery and your mum couldn't. I do know that I was young (46) and didn't really have any other health issues. There was a time that I heard numerous "No's" regarding the surgery. I don't know exactly what made the surgeon change his mind after refusing to do it twice before. I don't know if some of the factor's regarding my case were the catalyst or if the relationship between my oncologist and my surgeon was the catalyst. Or the combination of both. There is really no way for me to find out but for whatever reason everything finally came together for me, after quite a long time.
No one ever wants to lose their Hope and Faith but when your mum is called home then that is the way that it is and we have to accept that even though we may not like it. You can tell by your posts that you love your mum very much and only want the best for her. You are a continuous source of love and support for your mum. She knows that in her heart and as a mom myself I know that we never want to be a burden to our children.

My surgeon's name is:
Howard Reber, MD
Specialty Surgery
Hospital Affiliation Ronald Reagan UCLA Medical Center
State License Number C37087
Contact (310) 825-4976
Email Address hreber@surgery.medsch.ucla.edu

He is assoicated with The Jonsson Comprehensive Cancer Center.
http://www.cancer.ucla.edu
Check out this website first, it has lots of good information.

I think that alot of the statistics regarding timeframes take age and patients overall health into consideration.

Hope you and your mum are doing well and I'll talk to you soon.
Take Care
Lily

To Lily50
Hi Lily, sorry for the delay in reply.

Thank you so much for your support and your doctor's contact details. I will as soon as I can send off all my mum's doctor reports to him and wait for his comments.

I will update you in due course.

My best wishes to your goodself and everyone on this thread.

Take Care
Mandy

Lily50

MandyCHK said:

To Lily50
Hi Lily, sorry for the delay in reply.

Thank you so much for your support and your doctor's contact details. I will as soon as I can send off all my mum's doctor reports to him and wait for his comments.

I will update you in due course.

My best wishes to your goodself and everyone on this thread.

Take Care
Mandy

Mandy's Mum
Hi Mandy,

Good to hear from you! You are very welcome, we are all here to support you!
Keep us updated as you can. We all know too well that this is a very difficult time for you and your Mum. When you need us just let us know.

Take Care
Lily

MandyCHK

Lily50 said:

Mandy's Mum
Hi Mandy,

Good to hear from you! You are very welcome, we are all here to support you!
Keep us updated as you can. We all know too well that this is a very difficult time for you and your Mum. When you need us just let us know.

Take Care
Lily

To Lily50
Thanks so, so much Lily. With a big bow. Best Wishes. Mandy

maudsie

MandyCHK said:

To Lily50
Thanks so, so much Lily. With a big bow. Best Wishes. Mandy

Hi Mandy
I am Maudsie, and I live in North Carolina. I received my GBC treatments at Duke in Durham NC......but Atlanta, as someone has pointed out, is chock full of good medical options, too. Most prominent I think is the Winship Cancer Institute, part of Emory University Hospital. It is important to get care at a major medical center, preferably an NCI Comprehensive Cancer Center, since gallbladder cancer is so rare. It is also true, however, that good oncologists from all over network with each other and are usually aware, or can find out, what the best and most up-to-date treatment options are for any given situation. But also important is to do what you are doing: research! ask questions! forums like this one! The internet has made such a difference for many of us -- given us a way to seek out some of this information for ourselves. And knowledge is power.
Best,
Maudsie

smart_dashing

Lily50 said:

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

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

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

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

Best results for gall bladder cancer
Hiii! howz u....?? m glad to found you here and n also know that you are GBC survivor... Well, my uncle is 70 yrs of age and he is from India... my uncle is diagnosed with gallbladder cancer stage 4 since December 2010.... He took a chemo in January 2011 but couldn't tolerate it... So, he didn't prefer any chemo after that.... Moreover, he lost half of his body weight n also not fit for chemo now. Currently, he is suffering from severe stomach pain... Now Doctor over here says that he has no way as the cancer spread to his Liver n other organs nearby...Doctor over here has discharged my Uncle from the Hospital last 6 days ago and advice to take pain killers like Morphine n contrammol Injection 2 get relief from pain... No other treatment is given by the Doctor other then 2 get relief from pain so far.. My uncle is now at home counting his days ahead... Is there any way to give him a good treatment in India yet to add few years more to his life...??? Plzz help me out for his best results... I feel like crying for him... Lastly, hope for your quick response.... My email id is (nasimsmartguy@gmail.com) thanx...
Yours faithfully
Nasim Sazzad Rahman

Lily50

smart_dashing said:

Best results for gall bladder cancer
Hiii! howz u....?? m glad to found you here and n also know that you are GBC survivor... Well, my uncle is 70 yrs of age and he is from India... my uncle is diagnosed with gallbladder cancer stage 4 since December 2010.... He took a chemo in January 2011 but couldn't tolerate it... So, he didn't prefer any chemo after that.... Moreover, he lost half of his body weight n also not fit for chemo now. Currently, he is suffering from severe stomach pain... Now Doctor over here says that he has no way as the cancer spread to his Liver n other organs nearby...Doctor over here has discharged my Uncle from the Hospital last 6 days ago and advice to take pain killers like Morphine n contrammol Injection 2 get relief from pain... No other treatment is given by the Doctor other then 2 get relief from pain so far.. My uncle is now at home counting his days ahead... Is there any way to give him a good treatment in India yet to add few years more to his life...??? Plzz help me out for his best results... I feel like crying for him... Lastly, hope for your quick response.... My email id is (nasimsmartguy@gmail.com) thanx...
Yours faithfully
Nasim Sazzad Rahman

Nassim's Uncle
Hi Nassim,

Welcome to our forum. I'm so sorry to hear about your uncle. I can tell that you love him a lot as you have come to this board seeking answers. I'm a five year survivor of this terrible disease. I was only 46 when I was diagnosed. When you say that your uncle couldn't tolerate the chemo was there any consideration to either lowering the dosage or changing it all together? My original cocktail (Gemzar and Carboplatin) didn't work for me in the beginning so they switched it (Gemzar aand Cisplatin). Or was he just too weak to be able to handle the treatments? This disease can be very painful. You need to find another doctor that maybe will have some suggestions on how your uncle can have a longer life. Maybe another doctor will have another treatment plan that will sit better with your Uncle. Give it a try, what do you have to lose. In order to beat this disease you have to have positive thoughts to get you through. In order for your uncle to have any quality of life the pain has to be minimized. It isn't unusual for nearby organs and lymph nodes to become involved. Your Uncle probably isn't counting his days ahead but is trying to make the most out of the days he feels he has left. Without chemo, radiation and surgery, palliative care is the only option left. He needs to be supported by family and friends and try to enjoy each day the best that he can. There are no alternative methods that I am aware of for this type of cancer. He needs to try and eat healthy and take supplements to help him through this terrible disease. Let us know what is happening with him and ask us any questions you want, we will try to help.

Take Care
Lily

Lily50

maudsie said:

Hi Mandy
I am Maudsie, and I live in North Carolina. I received my GBC treatments at Duke in Durham NC......but Atlanta, as someone has pointed out, is chock full of good medical options, too. Most prominent I think is the Winship Cancer Institute, part of Emory University Hospital. It is important to get care at a major medical center, preferably an NCI Comprehensive Cancer Center, since gallbladder cancer is so rare. It is also true, however, that good oncologists from all over network with each other and are usually aware, or can find out, what the best and most up-to-date treatment options are for any given situation. But also important is to do what you are doing: research! ask questions! forums like this one! The internet has made such a difference for many of us -- given us a way to seek out some of this information for ourselves. And knowledge is power.
Best,
Maudsie

Radical Truth - Jan's husband
Hello everyone,

This morning our dear friend Don was taken home by our Lord. He fought a good fight with this terrible disease.

Our thoughts and prayers are with Jan and her family at this difficult time.

This was Don's mantra (Now by Dave Carroll), give it a listen if you have a few moments.
http://www.youtube.com/watch?v=uQ1wtftL3nA

Take Care Everyone!
Lily

SusanCH

MandyCHK said:

To Lily50
Thanks so, so much Lily. With a big bow. Best Wishes. Mandy

Joining
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

westie66

SusanCH said:

Joining
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

New to gallbladder cancer
Hi Susan: See other responses on the "other" discussion thread for gallbladder cancer - for some reason we ended up with two similar threads! I did respond there too but forgot about the cancer markers. My oncologist doesn't really believe in them but I had them done in blood work anyways. I had CA-19 and CA-125 and CEA done. The CA-125 is for ovarian cancer and its spread to the peritoneum, the CA-19 for liver and CEA for other cancers especially colon cancer. Their increases/decreases can tell the oncologist what is going on with the cancer growth and spread I guess. Mine tests were all normal. My gallbladder cancer was detected during a simple blood test during an annual physical exam which showed a rise in liver enzymes.
I don't know much about tumours in the bile duct but LIly50 can sure help you there as she is a 5+ year survivor of gallbladder cancer.
Cheryl

parthgovil

Lily50 said:

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

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

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

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

Gall bladder cancer
Hi,

I am from Bangalore, India. My father's been diagnosed with gallbladder cancer stage 4 which has spread slightly to liver as well.

Yours seem to be a very motivating case, anything specific you did + can you give me the contact details of the oncologist who treated you.

Regards

Parth

bmcsatmss

Lily50 said:

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

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

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

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

about my mother(57 years)
hi,I am a 3rd year medical student from Srilanka. My mother was recently diagnosed for galbladder cancer which spread into liver and lympy nodes.Due to para aortic lymph node involment surgery not done.Today she has inserted a stent to releave symptoms.One of ouroncologist have desided to start chemotherapy.But he told that it was not sure.If any one can help me please reply me.I want to know about chemotherapy and how from where we can take it.thank you(twmsandamalee@gmail.com)

cuddlebeardee

bmcsatmss said:

about my mother(57 years)
hi,I am a 3rd year medical student from Srilanka. My mother was recently diagnosed for galbladder cancer which spread into liver and lympy nodes.Due to para aortic lymph node involment surgery not done.Today she has inserted a stent to releave symptoms.One of ouroncologist have desided to start chemotherapy.But he told that it was not sure.If any one can help me please reply me.I want to know about chemotherapy and how from where we can take it.thank you(twmsandamalee@gmail.com)

about my mom (89 years old)
Just a few months ago my mom was diagnosed with gall bladder cancer. She had said that she was having some back pains and noticed she had a rash on her side and lower back. It turned out that she had shingles, so they put her on gabapentin, she has healed from that. Then the doctors did a biopsy and found a tumor in her stomach, did the Pet Scan and that's when they found it was cancer.

Right now she has stage 4 cancer, just started chemo last month. The doctor put her on Gemzar. Last week when they the blood work they were going to check her markers, well yesterday, they told us that her markers have come down quite a bit.

I've noticed that when she comes out of chemo, she is loopy, a bit disoriented, her behavior is off. I don't know if this is typical or I can just blame it on her age. It frustrates me to see her act like this. She is fine when my daughter and her great-granddaughter come over. My granddaughter is 21 months, she is wonderful.

I have concerns that she is loosing weight each week, she is small in frame to begin with. About 15 years ago I lost my dad, he went in for a quad by-pass and didn't make it, then loss my aunt and uncle the following year, so my mom's support team is no longer. Her support team is my brother, my daughter, some family members and my boyfriend. I've talked to my uncle, he is a retired microbiologist in cancer research and he tells me to hang in there. I take her to her appointments and I use up a lot of leave, thankfully where I work I accumulate leave but it does take a tole on me.

I'm curious if others out there are experiencing the same thing with their loved ones going through this. I really don't have anyone to talk to about this. Right now we are hoping for remission. I try to educated myself on this type of cancer as much as possible.

I look forward to reading any comments from others out there, take care everyone and my prayers are with you each and every day.

Lily50

parthgovil said:

Gall bladder cancer
Hi,

I am from Bangalore, India. My father's been diagnosed with gallbladder cancer stage 4 which has spread slightly to liver as well.

Yours seem to be a very motivating case, anything specific you did + can you give me the contact details of the oncologist who treated you.

Regards

Parth

Parth's Father
Hi,

Welcome to our board. This thread is a little older than the Gallbladder Cancer 2011 thread. Many people have moved over to the smaller thread as it takes forever for this one to load and finding new posts can be difficult.

I'm so sorry that this terrible disease has entered into your lives. It is a terrible disease and the statistics are out-dated and give little hope. I am a 5 year survivor of this disease. I was diagnosed in 2005, received chemo from 12/2005 thru 09/2006. I had surgery 10/2006 and then more chemo in 01/2007 thru 03/2007. I was Stage 4 and inoperable. My chemo cocktail was Gemzar and Cisiplatin. It took 3 visits to the surgeon in another state before I was given the opportunity to have an extended (or radical) cholecystectomy performed at UCLA in California.
My oncologist was:
Cancer and Blood Specialists of Nevada
Russell Gollard, MD
58 N. Pecos Road
Henderson, Nevada 89074
702-822-2000
Green Valley Location
He is the best and saved my life.
My surgeon was:
Howard Reber, MD
Specialty Surgery
Hospital Affiliation Ronald Reagan UCLA Medical Center
Contact (310) 825-4976
Email Address hreber@surgery.medsch.ucla.edu
He is associated with The Jonsson Comprehensive Cancer Center.
http://www.cancer.ucla.edu
Check out this website, it has lots of good information

The journey with this disease is long and hard. It is important to treat the whole body along with the mind and spirit. Nutrition is very important along with exercise and I found meditation helps. Don't lose your Hope and Faith when dealing with this disease.

Take Care
Lily

Lily50

bmcsatmss said:

about my mother(57 years)
hi,I am a 3rd year medical student from Srilanka. My mother was recently diagnosed for galbladder cancer which spread into liver and lympy nodes.Due to para aortic lymph node involment surgery not done.Today she has inserted a stent to releave symptoms.One of ouroncologist have desided to start chemotherapy.But he told that it was not sure.If any one can help me please reply me.I want to know about chemotherapy and how from where we can take it.thank you(twmsandamalee@gmail.com)

57 Year Old Mom
Hi!

Welcome to our board. This thread is a little older than the Gallbladder Cancer 2011 thread. Many people have moved over to the smaller thread as it takes forever for this one to load and finding new posts can be difficult.

I'm so sorry that this disease has come into your mother's and your life. It is a terrible disease without much research. The information that is out there is very outdated. Your mother is fairly young. I was 46 at time of diagnosis Stage 4. You are such a good son to try and help to support her. Even though she hasn't had surgery does not mean that she can't have it later. I had to complete 11 months of chemo (Gemzar and Cisiplatin-IV) before I could have an extended (or radical) cholecystectomy. I had to have an additional 3 months of chemo after that as there were still cancer cells in the lymph nodes that they removed. I didn't have radiation as my liver was compromised. Many others have had to have stents to get relief until they were able to have surgery.
I have listed in the post before yours my oncologist and surgeon names.

Hope and Faith can carry you through this long and hard journey.
Take Care
Lily