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Gallbladder Cancer Stage 4

gwc345
Posts: 2
Joined: Apr 2009

Hi,

A week ago my mom was diagnosed with gallbladder cancer stage 4. I am looking for survivors. Anyone who knows a survivor. I know the statistics, the doctor has already given us a time frame, and the oncologist has told us to go for "quality of life".

If there are any survivors or if you are having successful treatments I would like to hear from you. What have/are you doing right? Where did/are you getting treatment?

Any information you could give me would be greatly appreciated.

Thank you.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Maria,

I'm glad that you are joining our little community. I'm so sorry that you Mom has been diagnosed with this terrible disease. My diagnosis was T4 in December of 2005 and I have been in remission for 3 years. The doctor's all seem to give dire prognosis, The statistics regarding this disease are unreliable at best.

I agree with Cheryl, if your mother has been a healthy person she needs to get even healthier and stay postive. Don't not let anyone take away your HOPE and Faith.

She can fight this disease!

Take Care
Lily

Helenab
Posts: 3
Joined: Jul 2010

Dear Lily,

Thank you so much for your words. They really have had an effect on me, and I will share them with my mom when she knows about her situation. Indeed, faith and hope cannot be forsaken, and your message and that of Cheryl have rekindled them in me. I hope and pray for your continuous good health and will love to keep in touch.

All the best for you,

Maria

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hello Maria,

It is very important to communicate with others regarding this disease. Ask any questions as everyone here has gone through or is going through the same thing that you and your Mom are experiencing. Let us help you if we can. Again this is a terrible disease but not one that we can't win againist. There are some success stories out there and everyday that passes another person has been told that they are scheduled for surgery or that the chemo and/or radiation has shrunk the turmor(s). Try to stay positive and talk to us.

Take Care
Lily

Helenab
Posts: 3
Joined: Jul 2010

Dear Cheryl,

I read your message and I was overwhelmed with gratitude. Thank you for having taken the time to answer and for sharing your experience - you have made a big difference for me. I am so happy that the results of your MRI have been good. I hope with all my heart that everything goes perfect for you and will pray for that. And that you have many more chances to visit my country. If you do so, I would love if you could met my family, they will love to I am sure.

Your message gave me hope much needed. My mom does not know yet that the tumor was cancerous. They have decided to tell her that the results will be out only after fifteen days. This was unclear to me until today, when I spoke with her and she told me she hopes the tumor will be benign. It broke my heart.

In any case, I will try and apply your advice. She is got to fight and I am sure she will. I trust this battle can be fought and won, as your example shows.

Lots of thanks and all the best for you,

Maria

westie66's picture
westie66
Posts: 642
Joined: Jun 2010

Thank you very much. We will all be thinking of you and your mom, too. They didn't tell me for one month - I guess they want us to heal first, get our bodies healthier, to better absorb the bad news and fight the disease.
I would love to visit Ecuador again and you and your family. What part do you live in? I have spent most of my time there around Quito, in the rainforest to the east of Quito, up in the high Andes, down south to Cuenca (did I get that right?), and then along the coast from Guayaquil (spelling?) northwards. It is the most beautiful, friendly, country I've visited. Do you know you have more birds than any other place in South America (I think it was over 7000 at last count). I've seen there the tiniest hummingbird and the biggest hummingbird. A professor friend here in Anthropology married a lovely man from Quito and she studies women's issues there.
Anyways, fight the good fight for your mom.
Cheryl

teresa_g
Posts: 1
Joined: Jul 2010

Hi Everyone,
My dad was diagnosed with stage 4 gallbladder cancer in March 2010 after having his gallbladder removed. CT Scans and a biopsy confirmed that the cancer metastasized to his liver. Since he had several tumors in different regions of his liver, surgery would not be an option (at least not yet). After he healed from his surgery, his oncologist (at the university of chicago) put him on Gemcitabine and Cysplatin. After 6 cycles of chemo, the follow-up CT scan showed minor tumor shrinkage! We were so happy and grateful for the positive news. The plan is to continue the chemo and do another check after 6 cycles. We are praying that the tumors will continue to shrink to the point where he may be a candidate for surgery someday. I have read and been told that this cancer is tough to treat and after time some patients will stop responding to treatments all together.

Does anyone have any success stories on other treatments for metastatic liver tumors? I am specifically interested in hearing about:
-radiofrequency ablation
-chemoembolization
-selective internal radiation therapy (SIRT)

I have asked my Dad's oncologist about each of these, but he didn't seem to be a fan of them and didn't think my dad would benefit from them. We'd be willing to take my dad to a different Dr if these treatments do in fact work.

Thanks to the GBC survivors who have posted on this forum. Your stories and courage are truly inspiring and SO very helpful for those of us caring for someone with GBC. I lost my mother to non-hodgkins lymphoma so I am putting up a fight to keep my dad around as long as possible.

Thanks
Teresa

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Teresa,

Welcome to our little forum. Your Dad's story sounds so familiar to all of us here. Dignosed with gallbladder cancer after removal of his gallbladder. Mets to the liver therefore no surgery yet. Sounds like he is doing well with his treatment and it is working on shrinking his tumor. Gemzar and Cysplatin cocktail seems to be the chemo cocktail of choice lately. It is the cocktail that I had and I am a survivor. This is a very difficult cancer to treat because the statistics are old and outdated. It is becoming more and more recognized almost up there with pancreatic cancer. Once my treatment plan was completed and my oncologist stated we needed to have surgery to get the turmors out then additional chemo after surgery I was ready for it. It took 10 months from diagnosis to surgery when I was originally told twice that there was nothing the surgeon could do for me. I wasn't willing to accept that and I did my best to do everything in my power to get rid of the cancer that was invading my body.

Have you checked the Liver Cancer forum board for your questions. There is alot of information there regarding alternative treatments.

How old is your Dad? He is a lucky man to have a daughter that loves and cares about him enough to want him to be with her always.

Take Care and let us know how he is progressing.
Lily

kamichailo
Posts: 1
Joined: Aug 2010

Does anyone have a story where the cancer has moved into the stomach. We were told inoperable and incurable.

Thanks for any ray of hope.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Good Morning,

Welcome to this forum. How long ago was the diagnosis? Have you already gotten a second opinion? In most cases of stage IV gallbladder cancer the stomach is almost always involved. That it isn't in the liver might be a blessing.
I too was told that my cancer was inoperable and incurable, but I have survived (2005) and there are others out there with similiar stories to mine. Chemo and radiation can change the dynamics of the present situation. Doctor's are allowed to change their minds from the initial diagnosis. You have to have Hope and Faith to get you through this. Maudsie just posted today that she is now cancer free for two years. You can get through this just ask for help. There are alot of people who are going thru this right now along with others who have been through what you are going through. Let us try to help you in any way we can. There are lots of stories of others that were told no surgery in the beginning but in the last month I know of three surgeries that have happened when nine months ago they were told inoperable. My defination of "inoperable" means "just not yet".
Let's us know what part of the country you are in so maybe someone is your immediate area can connect with you. This board has become a ray of hope for others and it can be for you also.

Take Care
Lily

ejanszk
Posts: 2
Joined: Sep 2010

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!

ejanszk
Posts: 2
Joined: Sep 2010

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

kjp
Posts: 3
Joined: Sep 2010

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.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

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

kjp
Posts: 3
Joined: Sep 2010

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!

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

You are welcome. Most people that I speak to are in relatively good health when they start on this journey. This disease can sometimes have no apparent symptoms. Or maybe we jut chose to ignore what we just classify as getting older ache's and pain's. It is good that she is fairly healthly going into her treatment, that can help her alot. It can take a toll but there is really no option not to do the treatment. It is a understandable that your mother and you are in shock when you were told that she has a rare cancer disease. That really came out of left field for you.

How many treatment cycles is she scheduled for? What chemo cocktail is she receiving? Be mindful of not eating too much the day before chemo as it can make it more difficult on her. Hydration is the key, more so than the food.

I'm glad to hear that she has a positive attitude, strong hope and faith. It is very important because she needs to fight this not only physically but mentally. Family and friends are so very important to support each other through this terrible disease.

Take Care
Lily

kjp
Posts: 3
Joined: Sep 2010

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!

OregonKeith
Posts: 2
Joined: Apr 2010

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

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Keith,

I'm so sorry for your loss. I can tell that you loved your wife very much and I'm sure that right now you feel somewhat lost. She is still with you and will be forever. Thanks for letting us know.
The doctor's are just in the beginning stages of understanding how to treat this disease and there is a lot of trial and error going on. It is a war that will not be easily won. Please email me at LGregg6293@Aol.Com with the details of your wife's journey. I'm sure that some of the terrible situations that you experienced could be used to help make others aware of some of the pitfalls in their own journey.

Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hello,

Hopefully some of your confusion has passed and your mom is on the right road again.

I sometimes don't understand why doctors can be so insensitive. I think that they have so many patients that they really don't remember what they have said to you on previous visits. Many doctors based on their experiences will sometimes offer the quality of life card and we really don't want to receive it. You were blind-sided once again. If there are options of different chemo's then insist that your mother try them. As long as she is willing to go the distance they should want to try and help her. I would take a 15% chance anyday over the alternative. This is an aggressive cancer and needs to be treated in an aggressive manner in order to be successful. Yes, it is true that the combo is very hard on a person but what other choice do you have? I would consider finding another oncologist who would be more compassionate and maybe has more experience with this disease.

My first combo cocktail didn't work to well for me at first - Carboplatin and Gemzar.
We changed it to Cisplatin and Gemzar and that worked for me. Everyone is different and the right combination of drugs need to be found. There are side effects that are different for everyone. If you are lucky the side effects can be minimal or they can be quite difficult.

Please let us know how she is doing and keep in touch.

Take Care
Lily

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hello Elizabeth,

You are such a good friend to try and help your friend thru such terrible circumstances.
Those books than Jan recommended are wonderful. Your friend is so young to have to deal with something like this. I lost my father at the age of 21 and it was very difficult. There had to be a reason why they transferred her to hospice, do you know what that is? Since she was receiving treatment with 12 different strains her body was being attacked very aggressively. There is such a thing as chemo poisioning where she was given too much. When they are doing aggressive treatment that is a possibility. I spent 5 days in the hospital when they did that to me. Oncologists sometimes won't admit it but it can happen. My oncologist admitted it to me and he stated that on numerous occasions that he took me to the edge and back.

I don't believe there is such a thing as false hope. Without hope and faith there is nothing. But Jan is right that you have to come to terms with the possibility of death, as this is what life is all about. No matter how hard it may be to even discuss it. I'm sure that since you stated that she was such a vibrant women to see her this way can be quite unbearable for her daughter. Counseling is always as good idea, as sometime therapy can give you clarification on certain issues. I'm sure that she is probably heavily medicated at this time and cannot convey to you or her daughter what she would like to do. It is just an awful situation and for you to be there for your friend means a lot.

At this time are you aware of everything medically that has happened to her? Do not be afraid to ask questions and research information. Someone needs to be her advocate! If she doesn't have a spouse, who knows what her wishes are? These are things that people don't want to discuss or until they have to because they are in a life threating situation do they discuss it. We all like to think that we will be around forever.

Let us know how it is going.
I'll be praying for her and her family.
Take Care
Lily

tigressdana
Posts: 8
Joined: Jan 2011

Hello All:

On 12/29/2010 my grandma was diagnosed with gallbladder cancer. We got her in at The Ohio State University James Cancer center where they performed a needle biopsy to confirm that it was gallbladder cancer and that the cancer was now in her liver. The gallbladder has attached to the liver and there is (from what I have been told) at least one large tumor in the liver. The surgeon said that he would not be able to remove the gallbladder or just a part of the liver. The doctor said he would say she has about 3-6 months left and that it would probably progress very quickly.
My grandma is a very stubborn woman (which can be bad...she says she doesn't want treatment but could also be good...if she would start treatment I think her stubborness would help to pull her through). She does not know the time frame yet. (We are debating on whether to tell her or not...some of us want to some of us don't.)
We go to see the doctor of internal medcine to see if he reccommends any treatments or trials (my grandma is at least willing to go to see what he says) this Monday (Jan 31, 2010).
Any suggestions about questions we should ask or anything? At this point any suggestions or examples or words of wisdom and hope would be beneficial to us.
I was also wonderng if anyone had ever heard of someone who had gallbladder cancer that has spread to the liver to have their gallbladder and liver removed and have a liver transplant? (This was just a thought I had if any of her relatives were a match.)

Readig all of your posts has given me a glimmer of hope. My family and I are thinking and praying for all of you!

Thanks!

Dana

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Dana,

Welcome to this forum. I'm so glad you found us. I'm Lily and I am a gallbladder cancer survivor. I was diagnosed in 2005 and I too was given a short time frame to live. I had gallbladder cancer with tumors in my liver, stomach,intestinal track and lymph nodes. I had what is called a Extended (radical) cholecystectomy. They removed my gallbladder and a wedge shape section of my liver along lots of other stuff. It wasn't an easy surgery but I made it. I did chemo before and after my surgery. Since the liver is one organ that can regenerate itself unless the whole liver is very compromised they won't usually do a transplant. But I could be wrong. My surgeon was Dr. Howard Reber at UCLA in California. He is part of the Jonnson Cancer Center and the Pfleger Liver Institute.

Don't be discourged about the timeframes as these stastics are old and outdated. Anything is possible. You should always get a second, third even fourth opinion if necessary. Don't give up to quickly. Has she had a PET Scan, CT Scan, MRI and what were the results?

Being stubborn is part of whom your grandma is and it could work to her advantage. The fact that she is willing to go see what the the Internal Medicine doctor has to say means that she isn't really willing to give up yet. Even though she says she doesn't want treatment in her heart she wants to fight. I think that honesty is the best policy so that she can have a clear picture of what she is going up against. Sometimes other doctors may let something slip unintentionally when they think the patient is already aware of the situation. You really don't want her feel that she has been blindsided. She has to be her own advocate for her healthcare and if she is unable to do that then someone needs to be her advocate.

Make sure that you ask any questions that you feel could be important. Write them down before going to the doctor. It helps you to remember to ask. Such as if she was to try chemo and/or radiation how many cycles would it entail? What chemo medication would she be receiving? From the blood tests what are the tumor markers? Make sure you get copies of any tests that she had had and start building a medical profile for her if you continue to go see other doctors. Not only does she need to find a doctor that she is happy with but also someone who has experience with this type of cancer.

Good luck to her tomorrow and let us know how it goes. Ask us anything and we will try to help.

Take Care
Lily

tigressdana
Posts: 8
Joined: Jan 2011

Lily,

Thanks for responding. How are you doing? Were you in much pain prior to your diagnosis?
My grandma has had a nuclear scan and I believe a CT scan and possibly an MRI. As well as blood tests and the needle biopsy.

My aunt and I have some questions written down but not all that you suggested. I will include those on my list of questions.

I will let you know what we find out. Thanks again so much!

Dana

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Dana,

I'm doing quite well. I am going for my 6 month CT Scan tomorrow and it will be a good one. It is a neccessary evil for me and even though I would prefer not to go I have to.
My oncologist is a little overprotective and he just wants to make sure that if anything is going on that we catch it right away. Better safe than sorry I always say.

I wasn't in much pain prior to my diagnosis. My symptoms in the beginning were just bothersome. I had a tendency to ignore things as I was so busy. When I received my diagnosis I felt like it was coming out of left field. But I tackled it head on and just kept going.

I'm glad that I could help with your questions.
Good Luck
Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Lily -- good luck today! please let me/us know how your scan goes!!!!
big hug from me, Maudsie

tigressdana
Posts: 8
Joined: Jan 2011

Hey Lily,

Sorry it's taken me so long to respond! It's been a lil crazy around here!
First off how did your CT scan go?? And I think them being overprotective is much better than the opposite of that :) I hope you are feeling great! Have you stopped chemo treatments ?
My grandma starts her treatments tomorrow morning (Friday 2/11/11). The doctor said surgery wasn't an option because there were so many spots on her liver. He said he hopes the chemo will give her a year or so. He said he has heard of it lengthening lives for 2-3 years but I think, the way he talked hes just going for a year now. He said the chemo is just to attempt to slow the spread of it. He said she will be on it for the rest of her life, or as long as she can handle it (if it would make her sick), or until it stops working. I just got off the phone with her and she said she wasn't really nervous. Hopefully she doesn't have a bad reaction and won't be sick to her stomach.
She has seemed to be complaining more of high abdominal pain but she said its more or less just annoying.
I hope all is well with you. Thanks for everything!

Dana

tigressdana
Posts: 8
Joined: Jan 2011

Lily,

Do you mind me asking what age you were when diagnosed? If you don't want to say I completely understand.

Thanks and take care,

Dana

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Dana,

I was 46 years old at time of my diagnosis. I will be turning 52 this year. Every year I celebrate my birthday as a milestone in my life. No matter what age you are most of us feel alot younger than our actual age. Thankfully I was in pretty good health at the time which helped me. This disease doesn't discrimate as far as age is concerned. The age range spectrum is huge.

Take Care
Lily

tigressdana
Posts: 8
Joined: Jan 2011

I'm glad you were healthy..I'm sure that did help alot!
My grandma has her second chemo treatment this Friday. She was tired a couple of days after her treatment (well more tired than on a normal day) and her feet swelled really bad for about 2 days. Other than that she seemed to do well with it. We are taking turns taking her. They said we could just drop her off and pick her up but for right now we feel being with her is probably bettr. I'll be taking her for her third chemo treatment. I think having us there may help to keep her mind off things. She is also battling dementia and lower body parkinson's so I'm not sure how much she remembers/understands. I'll keep you updated.
I hope you are doing well. You're such an inspiration! Thanks again for everything!

Dana

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Dana,

Good luck tomorrow. I'm glad to hear that the first treatment went well. Make sure that you share with the nurse and/or the doctor about the swelling in her feet. That is something that should always be checked to see if the fluid might be collecting in one place. Being tired is perfectly normal. Since it was her first chemo even though she told you that she was not nervous she probably was and the first time there are so many unknowns that it can be very exhausting. I agree with you that being with her is so important. It takes her mind off of the treatment. She isn't alone in this battle and she appreciates that her loved ones are taking the time to be with her. Also since her family knows her the best if she was to have any issues that she couldn't communicate to the nurses about someone is with her to be her advocate.

I am doing well thank you, my scan came out good and everyday is a blessing for me.
Let us know how it is going.
Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Hi Dana, I just want to add to Lily's comments. I was diagnosed with GBC 2-1/2 years ago, after I had my gallbladder removed for some vague gassy pains and some vomiting. Surgery is the first and best option for dealing with GBC when it is possible. So usually the next step in a case like your grandmother's is, if she is in good shape physically otherwise, to have a surgery to remove her gallbladder, some surrounding lymph, and a large wedge of liver that sits near or touches the gallbladder. (I did this and had the cancer seen on my liver removed....we hope that is all). If tests such as CT and PET scans show that the liver is more involved than what can be surgically removed, as seems to be the case with your grandmother, that does not mean that this type of surgery would not be an option down the road. Often chemo can shrink tumors enough to make surgery once again an option. All cases are different and everyone is different. (by the way, liver transplantation is probably NOT an option). A good conference with an experienced oncologist would be in line. And I agree with Lily, it would be good if your grandmother were aware of her situation so she can make informed decisions and choices, what to do, and what not to do. Good luck! Prayers your way.....

Maudsie

seli
Posts: 5
Joined: Jan 2011

Hi

I'm clueless & I'm so happy to find this web with all these wonderful survivor's stories. My mother is 59yrs old & has been been diagnosed with gallbladder cancer few weeks ago. She was feeling pain & when she went to the hospital, the doctor told her, "they have to remove her gallbladder ASAP & they did. That's when they discover the cancer. Her cancer stage is lV and Thanks to God, it hasn't spread to anyone of her organs yet. She'll be back to U.S. on Feb 7th, 2011 and she will either be in Cincinnati OH or Atlanta GA, & I'm looking for any survivors who had recieved the treatment either in Cincinnati or Atlanta area. We would like to find her the right place & find the right doctor,'cause Once she arrives, We don't want to waist any time. We want her to start with the treatment ASAP. If it's possible it'll be great if she can get the threatment in either one of those 2 cities(cincinnati or Atlanta); However, as long as it's anywhere in U.S.,I'm up for all help I can get. Please let me know, anyone. My faith is stronger than ever & I'm not ready to loose it. I just hope my mother has as much faith & hope I have or even more, 'cause she needs it more than me to fight & win this scary disease.

Thanks
Seli

maudsie
Posts: 54
Joined: May 2010

Hi Seli -- I just have time for a brief note, and I want to say that it is good that your mother will be in one of these two large cities, as both have top-rate cancer centers. I agree, your mother should be looked at as soon as possible, and be evaluated for further treatment which may include surgery, chemo, radiation, or all three, depending on the stage and spread, if any, of her cancer. Stage IV generally means that there is involvement elsewhere, somewhere outside of the gallbladder itself. Research on the internet for cancer hospitals in these areas, Cincinnati and Atlanta. I know that Atlanta especially has MANY options, but she can receive great care either place. It is great that you are getting a head start on this, your mother is lucky to have such good support!
Maudsie

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Seli,

Welcome to this forum. We are glad that you found us too. Your mother is a very young women and she can beat this disease. It is a long journey but Hope and Faith will carry you thru. It is very common for this disease to be diagnosed once gallbladder surgery has been done. I agree with what Maudsie stated that when it is Stage 4 other organs are almost always involved. Your Mom should be home tomorrow and you can then expend your energies on finding her a good team of doctors. Whether she will be in Cincinnati or Atlanta there are good facilities in both of those areas. Do plenty of research and make sure that your oncologist has had experience with this disease. Time is of the essence and getting her treatment started right away is paramount. You will have to have patience because sometimes things progress slowly until you find the right doctors. Always get a 2nd,3rd even a fourth opinion if neccessary. The doctors and treatment that you select may be the most important thing that your mom has ever done. She has to be comfortable with the doctors that are walking by her side in this journey. Hope and Faith are very important as you all walk this dark journey. There is HOPE for us all! Ask us any questions you want when you are getting things set up for her. Don't believe all the negatative information that you read on the Internet as it is pretty outdated.
Keep talking to us we will help if we can.
Take Care
Lily

seli
Posts: 5
Joined: Jan 2011

Thank you so much for all the hopefull, positive comfort & ideas you are giving me. It means a lot. It's so great to connect with such amazing survivors like you too. It's giving me so much hope. As I was waiting for my mother arrival I've been login in to this website to keep my hopes with me. I believe in God more than anything 'cause he's the only one who can do anything that's impossible to human. He can do it all. I also believe in miracle & I'm praying everyday that my mom is going to have her second miracle in life. She already had her first miracle when she survivor from 3rd degree burn in 2003 & I'm hoping her second miracle will be to beat this scary disease.
Lilly50 I was checking my email this evening & while I was responding for your email, I got an expected call from Rome saying My mother's surgery opened while she was in the plane & the flight had to leave her in Rome to get that fixed. I Thank you kindly for your email. They say she's in good hand. She was very weak 'cause of not being able to eat anything & she was getting iv to give her a strength for the 18hrs that she had to be in the plane. I always say things happen for a good reason. May God wanted her to get more iv before she gets here, may be that's why this happened so For now I have no idea when exactly my mom is going to be here in U.S. but I'm hoping in the next day or so. I'll know tomorrow for sure. Please keep her in your prayers. & I'll let you & Maudsie her situation once I know something & all the status once she arrives here. Thanks a lot for all the support & hope.

I'm so proud of all of you.
Seli

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Seli,

You have to have Hope and Faith to battle this evil monster called cancer. I have prayed for God's healing hands to touch your mother and everyone who is battling this disease.

I am a firm beliver that everything happens for a reason and maybe as you said that she wasn't in good enough shape to endure that long flight. I had only a two hour flight a week after my surgery and it was tough. Maybe her staying in Rome and being taken care of for a little while longer will just be beneficial to her recovery.

Let us know how everything is going once you get her home.

My prayers are with your mother as she makes this long journey home.

Take Care
Lily

tigressdana
Posts: 8
Joined: Jan 2011

Maudsie,

Thanks for your support! How are you doing/feeling?

The way the dr talked he doesn't think surgery will ever be an option because there are too many spots on her liver (I suppose there could always be a chance that the chemo might shrink them but I doubt it just the way he talked.)
He said the chemo wasnt going to be very aggresive just enough to attempt to slow the groth of the cancer to give her a year or so. As for telling her, she was there when he said that but she doesn't understand alot of medical things and has dementia which isn't horrible, but her short term memory isn't very good. The dr. made it clear that she would be on chemo for the rest of her life (or until it wasn't working or she couldn't handle it anymore) she after the appt she said he never said that and we must have heard him wrong. It's things like that. I'm actually surprised she agreed to the chemo...but she said tonight that she "didn't really have a choice." Although we, her family and the dr., did tell her that was one of her options. She didn't ask how long she would live without it and the dr. didn't bring that up.
She has her first treatment tomorrow so hopefully she handles it well and doesn't get sick. I'm sure she will be more tired and weak but hopefully that will be the extent of it.
Do you mind me asking what age you were when diagnosed? (I understand if you would rather not say.)
She is going to be 77 and up until the last couple of years noone could guess her age...but shes been showing it lately.

Thanks for everything!

Dana

Tethys41's picture
Tethys41
Posts: 1053
Joined: Sep 2010

There is a 69 year old gentleman who receives high dose IV vitamin C at a clinic I go to. He was diagnosed with gall bladder cancer in May of 2010,and his oncologist sent him home to die. He started getting high dose IV vitamin C, and it has kept the cancer from progressing. He is now receiving what is called dendritic cell treatments. They took some of his blood, sent it to a specific clinic in WA for genetic engineering of the dendritic cells. The cells are reintroduced into his body. These cells tag the cancer cells so that his immune system recognizes tham as something to be killed off. This is all I really know about his situation, but thought some of you would be interested in alternatives that are avaialable to you.

maudsie
Posts: 54
Joined: May 2010

Hi Dana -- I am doing fine, and feeling fine, thanks for asking. You asked my age: when I was diagnosed (2 years ago), I was 62. Most people with GBC are on the old side, but more and more seem to be in their 40's and younger. Your grandmother is 76, I believe you said, and chemo can be tolerated at almost any age, although good underlying heath is helpful, as is a positive attitude. Your grandmother had her first chemo yesterday, and I hope you will report how she is doing and what chemo she is on and how often, if you know. You are a wonderful and supportive granddaughter!
Maudsie

tigressdana
Posts: 8
Joined: Jan 2011

Hey Maudsie!
I'm glad you are feeling and doing well. :) Both you and Lily were young for a diagnosis but as we all know most cancer doesn't discriminate by age. My grandma...up until about 2 years ago was in pretty good health. She had some smaller issues but who in their 70's doesn't? We started to notice signs of dementia but she wouldn't go to the doctor (she didn't go to a doctor for over 40 years against all of us asking and begging her to go.) She finally started going to a family doctor about 5 years ago but wouldn't go see any specialists and finally 2 years ago she went to a neurologist. She was diagnosed with dementia and lower body parkinson's. And it seems like in the last 2 years everything has gone downhill relatively fast.
She doesn't seem to understand or maybe remember a lot about her cancer. She remembers she has it but that's about it. Her short term memory seems to be going pretty quickly lately so I don't know what will happen.
Right now she has agreed to the chemo treatments. She goes every other week for about 4 hours. She is receiving a mixture of cisplatin and gemicitabine. She has only had one treatment (her next one is this Friday 2/25/11). She actually said she felt "GREAT" the day after her first treatment. They gave her steriods before the chemo so I'm assuming that helped her but on Sunday (2 days after her treatment) she was really tired and Sunday night- Tuesday her feet were really swollen. On Monday she wasn't able to put shoes on. Other than that she seemed to handle it well.
My aunt is taking her to her next treatment and then I will be taking her to her thrid treatment. They said we could drop her off and pick her up but I think one of us being there helps to keep her mind off things.

Thank you for your support. I will continue to update (although as you see I sometimes take awhile to respond. Working full time, going to grad school full time, and trying to help take care of my grandma and spend time with her is time consuming to please forgive me!)

I hope you are doing well!

Dana

seli
Posts: 5
Joined: Jan 2011

Hi Lily 50, Thanks a lot for your prayer & support. My mother she finally arrived here in U.S. about a week ago. These past few weeks have been very stressful for us. We took her to University Hospital of Cincinnati & she was there for a week. Now she's home with us. They've told us there is nothing they can do for her except to put her on chemo for whatever time that she has left. They are giving us few months. I'm not letting them take away my hope & faith but at the same time, I'm terrified. I'm searching for survivors who've had the same case her like my mom.
This is her situation, her cancer happens to be Cholangiocarcinoma cancer. I don't know if anybody is familiar with that type of cancer. It's around & on her small intestine as well as on her liver blood vessel. Usually for this type of diagnose, a kind of surgery that is called Whipple surgery is recommended; however, they are saying they won't be able to do that procedure for her 'cause the cancer is showing on her blood vessel. Has anyone had this kind of problem when they were diagnose? What Chemo cocktail worked for you? & where you able to have the surgery after wards? Which surgeon helped you? My mom will start her chemo by the end of next week. she's having hard time eating so she's eating very little & I would like to know from survivors, What should be good to feed her? The doctors are not helping a lot. I guess it's 'cause they already believe there is no hope for her. she's also a type II diabetic. I'm keeping my faith & hope 'cause that's all I have right now, & I don't want any doctor to take that away from me. Please I need help so bad.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi Seli,

I'm so glad to hear that your mom has finally arrived back home. I'm sorry to hear that the University Hospital of Cincinnati didn't have better news for you. Have you checked into any other facilities yet?
I too was only given a few months and they were all wrong. Don't let anybody steal your Hope and Faith. It is natural that you are terrified, who wouldn't be? You need to continue on searching for answers and getting more opinions. I feel that you need to start some form of treatment for her to give her the best chance that she can possibly have. After some chemo treatments the situation could change for her.
Cholangiocarcinoma cancer is a cancer of the bile ducts but I'm sure that you already know that. Have you checked the other discussions boards regarding the Whipple surgery? Maybe someone has been in the same situation as your mom and found someone to do the surgery, check it out. I have found that little meals throughout the day worked best for me. Smoothies were a mainstay for me, easy to digest. Make sure that she gets plenty of hydration. Sometimes doctors can be so negative they make you just want to scream.
Hopefully her first chemo treatment will go well. This first treatment can be scary as there are so many unknowns at this time. It does get easier the more you do it. Did she get a port or will they be giving her chemo directly into the vein?
Let me know how it is going.
Take Care
Lily

tigressdana
Posts: 8
Joined: Jan 2011

Sali,

We are taking my grandma to the James Cancer Center at Ohio State...I see that you are in Cincinnati? Its only about 75-90 minutes. She goes to Dr. Saab....we were lucky that we got in so quickly though because we knew someone who knew someone. Maybe try there? Just a suggestion. Good luck! Thoughts are with you and your family!

Dana

maudsie
Posts: 54
Joined: May 2010

Hi Dana, I sometimes don't check this discussion board too often, and the way it is set up I often miss posts that I wish I had not. Sounds like your family has come together as quite a team for your Grandma. How is she doing these days? It's a long road! The steroids they often give with the chemo do indeed provide a nice boost for the first day after treatment, but then.....it's different for all of us, and I don't know about the swollen feet, which is usually more of a cardiovascular problem. Hopefully that has resolved.
I am doing great and feel so lucky.
Maudsie

Glendalough
Posts: 1
Joined: Mar 2011

Just found this site. We don't know what to do so I'm hoping that someone can help us.

My brother, 54 years old, was just diagnosed with gallbladder cancer. He went into the hospital initially for gall stones. I don't know what stage it is. It has attached itself to the liver and some in his lymph nodes. He is jaundice and his liver is not blocked, but his bilirubin count is high. They were going to put a stent in to drain the liver but found it is not blocked. For the past 2 weeks he's been in and out of the hospital, they did numerous tests, biopsies, they say his liver is fine, but they don't know why his liver isn't functioning 100%. There is no infection in the liver. They had scheduled surgery next week to remove the gallbladder and cancer and take part of the liver, and they wanted to start him on chemo or radiation to shrink the mass and while in surgery they were going to take sections off of the liver until they found healthy liver but have found that his liver is ok. Now they are saying that they won't do the chemo cuz the liver won't metabolize it and if they put him on anesthesia it might damage the liver or worse. They won't do any surgery until his bilirubin count comes down. Help! We don't know what to do. Are the doctors wrong in what they say about not doing the surgery and what they say about the liver not being able to metabolize the chemo or radiation and being compromised? They said that they will continue to run tests but he is not getting any treatment at all. We need a solution urgently.

Lily50's picture
Lily50
Posts: 209
Joined: Aug 2009

Hi,

Welcome to this discussion board. We are glad that you found us!

Your brother is fairly young and I hope that he was in fairly good health before his diagnosis. Many people have been told that they need surgery for gall stones and then have heard the devasting news that they have Gallbladder Cancer. It would be helpful if you could find out what stage he is in. I am a 5 year Stage 4 Survivor. This is a disease that you have to have patience with. Many tests, biopsies, numerous doctor's opinions is the road that he is on right now. Everything that you have stated about the surgery to remove the gallbladder, taking part of the liver, removal of cancer cells and lymph nodes and chemo and/or radiation is the standard protocal. I have never heard of not receiving chemo because the liver won't metabolize it. I have heard of not having radiation if the liver is compromised. I didn't have radiation because of that very reason. I do know for a fact that if your bilirubin count isn't within the normal range you won't be able to have surgery. That was told to me before I had my surgery. Luckily for me my counts came down so that I was able to have surgery.
Where is your brother receiving treatment? Is he in the US, Canada or somewhere else?
The reason I am asking is because we have people scattered all over the world. Maybe someone can suggest doctor's in his area. I am a firm believer in getting second, third and even fourth opinions. Your brother has to be an advocate for his healthcare and if he is unable to do that he needs someone to be an advocate for him.
Let us know how he is progressing.
Take Care
Lily

MandyCHK
Posts: 5
Joined: Apr 2011

Hi,

I am from Hong Kong.

My mum (62 years old now) was diagnosised to have gallbladder cancer stage IV in July 2010 which had already attached to her pancreas, liver and intestines and after the unsuccessfuly and anticipated 16 hours surgery, it turned out that she was removed from the operation theatre after 2 and 1/2 hours. The doctor only connected the liver to the intestines and did not remove anything cancer cells from mum except he took some for medical test.

Since August 2010, mum has been under the chemo and 2 weeks ago, the CA 19.9 index started to increase again so that we had a MRI and it showed that the trauma got back to the original size. Accordingly to the doctor, it is time to change chemo medicines. Mum had her first injection of the new medicines last Friday, she immediately lost all her apetite and felt the pain in the area where the trauma is and she felt very tired.

I understand that each combination of chemo medicine lasts around 6 months so that I checked with the doctor apart from the second combination how many more combinations we would get, the doctor's reply was that this second combination should be the last as there have not been a lot of chemo medicines specifically for gallbladder cancer. Even if he uses them, the side effect would be a bit unbearable.

of course, once we found out mum had the cancer last July, I had consulted about 5 specialist doctors and any possible cure. All of them said "No".

I read from your message immediately above that you are 5 years Stage 4 survivor, I just thought that I really have the need to write to you although I know there is not much you or I can do for my mum...

By any chance, I would be grateful if you could please advise what kinds of treatment you were or have been taking. Do you mind sharing a bit?

Thanks and with heaps of love and best wishes to you
Mandy

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