Gallbladder Cancer Stage 4

newnewkb said:

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

Tina's Mom
Hello Tina,

What a great daughter you are to your mother for taking the step towards finding information to help your mother with this terrible disease. Thank goodness with all the negativity out there that you found this site. This thread has been going on for over a year and there are others that have also survived this terrible disease or are in the midst of the fight. We are all here for each other. Hope, faith, support, whatever one needs to fight the fight for their life. This is a terrible disease and there hasn't been alot of attention paid to it because statistically most people when they are diagnosed with it may be too late for curative purposes according to doctors. But I say there is only one who can make such a decision and he/she doesn't live in this world. If you have read other postings you will see that your mom's diagnosis is pretty much the same as others. Each individual is different but the general consensus is the same. Some of us have heard the dreaded "No Surgery" for this type of cancer. I too fell into that catagory but it wasn't acceptable to me and some others. We all had different situations but in the end a few of us did receive the surgery after we originally we told "No". It is very important to receive second opinions and to have the attitude that we could beat this.
You mom is around the age of most of the patients that I speak to with a few exceptions.
The chemo cocktail she will be receiving is the standard protocol at this point. Gemzar and one of the platin series seems to be what everyone is receiving. I started with Gemzar and Cryboplatin and then was switched to Gemzar and Cisiplatin. I now know that there is a Cisiplatin shortage currently. I had what was classified as very aggresive treatment. I had treatment daily for two weeks and then a week off for 11 months. It was tiresome. Hydration is a key, along with healthy eating, phyical exercise as tolerated. I will review my list and see if anyone has a suggestion for you regarding an oncologist that they have faith in. Everyone tolerates chemo differently and yes there are side effects. Fatigue is a big one, hair loss (can be a really big one - was for me), loss of appetite, and the list goes on. You can't approach the chemo with waiting for the side effects to kick in. You just need to address them as they happen. Mediation helps alot and yoga. Talk to us with your questions as you experience them with your mother and we will try and give you advice based on our own experiences.

Take Care of mom and yourself.
Lily

Cancer Stage IV
Hi,

First off, I'm so sorry for everyone dealing with this horrible cancer right now, I can't even imagine how difficult this is for you.

My best friend's mom has stage IV cancer. Unfortunately, we're not positive what the primary source of cancer is, but there's speculation that it's from the gallbladder. She is on hospice now and the doctors say there is no chance for chemo again in the future. I just refuse to give up on her because she is such an amazing woman and such a fighter that I know she can get through this. My best friend is also only 21 and her mom is her life, so I want to do everything I can to help her.

Since she is clearly too weak for chemo and surgery, I was wondering if any of you have tried alternative therapies or treatments that helped. Is there certain foods you eat or any arguably "silly" things you've done that have actually helped? For example, I read about this stone therapy for cancer, where you hold certain stones depending on weight in your hands and it's supposed to balance your body out. It sounds ridiculous to me, but I'm literally willing to hear about anything as far out there as that.

Thank you so much!

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.

GallBladder Cancer Stage 4
Hi Lily 50,

I live in Australia and my mum was diagnosed with gallbladder cancer in February 2010 since then she has had four major surgeries to remove her gallbladder half of her liver, reconstruction of the bile ducts and also had a very large tumor removed from her abdomen.Mum has also had 3 months of chemo ranging from iv once a week to having a pump the delivers chemo everyday and well as 6 weeks of radiation therapy 5 days a week.
Her cancer spread to her liver, stomach lining, abdomen and some lymph nodes. I feel that maybe she doesn't have much time left. I have researched and there is just hardley any information about this cancer.

I hope that you are still doing well, and if there is any advice you could give me on the name of the chemo you had I would really appreciate it.

Thanks so much

Nat

unknown said:

This comment has been removed by the Moderator

Dear Jan,
Thank you so much
Dear Jan,

Thank you so much for your advice! I'll definitely pick up those books tomorrow.

I'm so glad your husband is doing better and I hope he keeps feeling better each day. I know doctors really don't know what they're talking about sometimes, but I'm just worried they might be right this time. My friend's mom is now unable to speak and can't eat anything. I guess I'm worried that if I can keep suggesting doctors and alternative treatments, but I don't want to give false hope to something that we may just need to accept. Do you think I should keep looking for alternative ideas or start helping my friend accept this?

She can't get chemo because the doctors say she is too weak. They also only suspect its gallbladder cancer - she has carcinoma of an unknown primary, so we don't actually know the source. So when she was getting chemo, they were giving her 12 different strains because they didn't know what to target.

They live in CT, very close to NY.

Thank you so much again and I really am so happy that your husband is doing well!
Elizabeth

inam said:

lily you really a great source of hope for cancer patients
hi lily...
my father diagnosed a gall bladder cancer a month ago..since that day we all are vary upset find no way.
but the source of hope is Shifa international hospital Islamabad,Pakistan
his oncologist start his chemo therapy,,until now 1 cycle have been completed and other will be tomorrow.
first is consist of Gemzar, decadon, zafan.
i personally want to contact you through phone or skype etc.i shall be vary thankful to you

remember my father in your prayers and may Allah give you a happy,properous life
regards
inam
+9203214068659

Inam's dad
Hi Inam,

So sorry to hear about your father. It is understandable that you are all upset by this terrible news.
I'm so glad for you that you have found hope for your father at this facility.
Have they told you what Stage he is in? How many chemo treatment cycles will he be receiving? How old is he?
I received Gemzar and Cisplatin.
Since this is a public forum it isn't a good idea to list your phone number. I don't take personal calls as things such as this are very private and I will support you however I can via this forum or email. You can email me at LGregg6293@Aol.Com.

Of course I will pray for your father, along with you and your family.
Take Care
Lily

kjp said:

New to discussion board
Hi,

My mother was just diagnosed with advanced, stage 4 cancer of the gallbladder. It has spread to her liver and surrounding lymph nodes and she isn't a candidate for surgery. We have been told it is inoperable, but she is receiving chemotherapy in hopes to stabilize and kill the cancer. She just began a treatment of Xeloda and Gemcitabine about a week ago and she is still in her first cycle. She is pretty nauseous this week and I was wondering if anyone else was treated with the same combination she is being treated with. Was it helpful and did you have any extreme side effects?

This diagnosis has been a shock to everyone in the family. We are still trying to deal with and part of that is becoming educated about the disease. I am so grateful I found this discussion board because reading information laden with statistics starts to remove the humanity of the disease. I am so happy to read about survivors and so hopeful to see that if a tumor shrinks patients can become candidates for surgery in the future. I never knew this was an option.

I am sure I will have more questions, but for now I wanted to post, introduce myself, and join the discussion. Thank you to everyone that has posted anything on this discussion board. It is such a wonderful resource.

KJP'S Mom
Hello and Welcome to our little but strong community!

So sorry to hear that your mother and you are dealing with this terrible disease. Her story closely resembles my story. Not a candidate for surgery does not mean never just not right now. I too had to hear a few no's regarding surgery and had to go thru 11 months of chemo before a surgeon would even consider surgery. I was not about to take no for an answer. There a some people recently that have been put on that chemo cocktail and are doing quite well. Some people have said that as long as they take the anti-nausea medication even when they aren't nauseous the medication works. I wasn't so lucky but shortbread cookies worked the best for me.

It is understanable that you are all in shock. This type of diagnosis hits you hard, especially if your mom has always been realatively healthy. How old is she? Where is she being treated at? There are lots of good facilities all across the world. Education about this disease is a good thing but remember that some of the information is out-dated and dismal at best. Your mom has to be her own advocate for this disease or if she is unable than for you to do it for her is wonderful. The doctor's are very cautious and since there really hasn't been much research done lately, and everyone reacts to treatment differently they won't tell you about the options. You have to have the right oncologist who will walk hand in hand with your mother to beat this disease.

Ask any questions that you have and we all will try and help you in the best way that we can.

Take Care
Lily

Lily50 said:

KJP'S Mom
Hello and Welcome to our little but strong community!

So sorry to hear that your mother and you are dealing with this terrible disease. Her story closely resembles my story. Not a candidate for surgery does not mean never just not right now. I too had to hear a few no's regarding surgery and had to go thru 11 months of chemo before a surgeon would even consider surgery. I was not about to take no for an answer. There a some people recently that have been put on that chemo cocktail and are doing quite well. Some people have said that as long as they take the anti-nausea medication even when they aren't nauseous the medication works. I wasn't so lucky but shortbread cookies worked the best for me.

It is understanable that you are all in shock. This type of diagnosis hits you hard, especially if your mom has always been realatively healthy. How old is she? Where is she being treated at? There are lots of good facilities all across the world. Education about this disease is a good thing but remember that some of the information is out-dated and dismal at best. Your mom has to be her own advocate for this disease or if she is unable than for you to do it for her is wonderful. The doctor's are very cautious and since there really hasn't been much research done lately, and everyone reacts to treatment differently they won't tell you about the options. You have to have the right oncologist who will walk hand in hand with your mother to beat this disease.

Ask any questions that you have and we all will try and help you in the best way that we can.

Take Care
Lily

Thank you
Thank you for the welcome, Lily. My mother was in good health before being diagnosed. She had lots of energy and was working out at least four times a week. This last summer, I truly thought she was at the peak of her health...and then the diagnosis came along. She is only 63 and it is still such a shock.

She is on an off-week so far as treatment and will start back up on a second cycle tomorrow. Her nausea has subsided this week and we have been very regimented with her anti-nausea meds to see if a strict schedule would help a bit more. She has been able to eat quite well this week, so we are hopeful that the second cycle will be a little easier to handle.

My mother has an incredible attitude, a strong faith, and a positive outlook. She is inspiring to the whole family and we gain strength from her own. On her good days we try to do as much as we can together as a family and she visits with as many people as she can.

Thank you again for taking the time to respond to my post. I know I will continue to read and post in this forum in future. Take care!

KatieDeBakey said:

Thanks, Lily
Thank you for your quick response, Lily. We are actually in Austin, Texas. I have only found one clinical trial near us that has to do with gastrointestinal cancers (that my mother would qualify for) and it is in San Antonio. I'm not sure about the type of chemo she is receiving. I'll be taking her to her second appointment for it on Thursday and I will have PLENTY of questions for the doctor. I was going to ask him about what I mentioned above and I will also ask him about the type of chemo she is already receiving. I'm so glad that you made it and that you are now helping others! THANKS, LILY! = ) Off to check out your profile!

gallbladder UGH
I am also in Austin, TX and my Mom, 70 yoa, was diagnosed with gallbladder cancer in June, after the gallbladder was removed. It has already compromised the liver, lymph nodes, lungs and abdomin (sp). She just finished a chemo treatment of 4 cycles over 21 days with cisplatin and gimzar. I was able to find a study in SA that we are traveling to hear about tomorrow.

Can you tell me how your Mom is doing and if you were able to find something that helped ? Due to very very very low blood counts, the chemo was reduced to 60 % and she was not able to handle the last cycle at that.

Has anyone here ever gone to Cancer Treatments of America in OK ?
Please, we have hope.
Susan

kjp said:

What next
Hello,

Thank you again, Lily, for your response. I am a bit confused right now and hope that maybe you or someone else can assist in some way.

As I mentioned before, my mother was diagnosed with Stage IV gallbladder cancer. We were told at the time of the diagnosis that the cancer had spread to her liver and surrounding lymph nodes. When we first met with the doctor he informed us that there were several different chemo cocktails that could be used in attempts to treat the cancer. My mother was "assigned" a combination of Gemcitabine and Xeloda, which she took over two, two-week cycles. She was given one week "off" between each cycle and then at the end of the two cycles she had two weeks off. Next, she had a CT scan taken.

This week we met with the doctor to go over the CT scan. He informed us that additional cancerous spots were found on the liver and possible, but not significant activity, occurred in the lymph nodes. Obviously, this was not the news we wanted to hear. Since this combination didn't work, I expected to hear the doctor offer another combination, but he brought up palliative care right away. When I asked about trying another combo he said it would likely be a a combo of an FU-5 drug and cisplatin; he described this combo as highly toxic, hard on the body, and that there was only a 10-15% chance it would be effective...and if it was effective only minimally. Overall, the feeling I got from him was to not try anymore chemo and instead continue living the highest quality of life without treatment.

At the first appointment, he said there were options and sometimes there was trial and error involved. I know this is a difficult cancer to treat, but I feel like he's given up on my mom already. I'm wondering if this happened to anybody else, where one combo didn't work, but another did. Has anybody had to try different combinations before finding an effective one? If you anyone has been on cisplatin and a FU-5 combo, how did you feel? What were the side effects for you?

If anyone has any input or advice to share, I would greatly appreciate it. Thank you again!

Similar experience
Hi KJP,

My name is Keith, and my wife was diagnosed with GBC in Feb of 2010 at the age of 44. She went through treatment with Gemcitabine and Cisplatin. Next they tried FOLFIRI and then Nexavar. All the treatments were ineffective. I found every doctor we talked to did not really offer anything to treat the disease. We had to make suggestions to get the treatment. Seems with this disease doctors assume a death sentence and do not spend anytime trying to find a treatment that might work. Unfortunately, my beautiful wife succumb to the disease on Nov. 5th 2010. I'm not trying to be negative, as I too believe a positive mental outlook is very important. If you would like more details about my wife's experience with the disease I would be glad to talk to you. Just send an email to keithg@summitsemi.com. I prefer not to post all the details about her journey on this site because hers was not a positive outcome, but I believe I do have useful information about the progression of the disease that could be useful to others, assuming one wants to know what happens as the disease progresses. I truly wish you all the best.

Regards,

Keith