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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.

aziza
Posts: 1
Joined: Dec 2011

hello lily! i hope you are doing well.I am aziza my father is 56 years old and find out about his gallbladder cancer on 30 october. Doctors told him that his cancer is spread upto liver,stomach and duodonum...during st scan they told that there are patches of cancer cells on liver so it cover some part.
His first chemo start on 10 november, second on 17 november and third on 1 december he's been called for another chemo on 8 december they said this its advance stage and chemo is the only option we have.
He is diabetic and piles sufferer and dealing very hard with chemo side effect...he cant eat feeling sick and hiccups troubling him in sleep and eating....he is loosing so much weight. he is in india.
Lily i read your story and it give me positivity and show me a ray of hope that my dad can beat this deadly disease....
can please tell me that how much chemo did you receive and how much time interval...
because the last chemo he had ...they called him after two weeks and it took hin 12 days to get better so he was ready for that chemo but now he's been called after 1 week so he is vey stressed to take another chemo so soon.
My mum she's very patient and big strength for family BUT MY DAD HE GAVE UP HIS HOPE.
I am in england and my parents and siblings are in india so i tell you what i know about his disease....i am very worried about him my brother and sister is so young and are in college and school.please pray for us and suggest some thing that make him feel better.

Niti28
Posts: 1
Joined: Feb 2012

Dear Lily50,

Your post gives me hope. My father has been diagnosed gall bladder cancer stage 4 spread to liver. His chemotherapy has started today. Doctors in India too have suggested a process of aggressive chemotherapy. Kindly let me know in how much intervals and how aggressive was the chemotherapy given to you.

Also, Kindly give me the contact details of the oncologist you consulted. Was it Dr. Gollard?

Awaiting your reply,
Niti28

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

Hi Niti28: You would be better to reply at the very end of this thread rather than on page 1. I'll let Lily50 know you have a query. I, too, have gallbladder cancer that spread to the liver and the peritoneum. After tumour removal I had 12 treatments of cisplatin + gemcitibine once a week for two weeks and then skip a week. I think had a further 12 treatments of oxaliplatin + irenotecan + 5FU pump every 2nd week.
Cheryl

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

Hi Niti28,

Welcome to our discussion board! I'm so glad you found us all and that this thread has given you Hope. Hope & Faith are essential in this terrible fight. I too was diagnosed with Stage 4 GBC in 2005 and here it is 2012 and I'm still here. Hope his first treatment went well. There are some other postings of others that are in India, check them out if you have time. It is easier sometimes to find others in your country that might have additional information of great doctors there. I did have very aggressive treatment and it was difficult. Since GBC is such an aggressive cancer it needs to be treated aggressively. I went 4 days a week 2 weeks on 1 week off. I would go in at 8 A.M. and if I was lucky I would be out of there by 2 P.M. I started chemo in December of 2005 and had surgery in October 2006 and completed chemo in March of 2007. I had to have both white and red blood cell shots when my counts would go down. I also had one platelet transfusion. Numerous hospital stays due to infections but my doctor would take me to the edge and back again. He did save my life along with my surgeon.

My oncologist's name is:
Cancer and Blood Specialists of Nevada
Russell Gollard, MD
58 N. Pecos Road
Henderson, Nevada 89074
702-822-2000
Green Valley Location

If I can answer any more questions let me know. Also this is a large discussion thread that makes it very difficult to find new posts so we have created the new thread Gallbladder Cancer - 2012 (Any Stage) for quicker responses.
Take Care
Lily

evelynchan2004
Posts: 6
Joined: Jul 2012

I have read alot of what you have wrotten, and have posted on blogs before.. You are such an inspiring person to have share your experience and giving people hope.. That's so great of you.. And i'm so happy for you and admire what you do for other's that you don't even know..

My mom is undergoing her 2nd treatment with chemo. She has gallbladder stage four, and her first treatment didn't work. Her first treatment was gemzar and cisplatin which :( Her onocoligist is treating her with 5fu and now it is her 3rd treatment. He said that if this treatment dosen't work his next step is hospice. She going in 2 weeks for her ct scan to see if it working. Her doctor said before treating with 5fu that the success rate is low.

I can see how much my mom is suffering where my heart just breaks. And sometimes I feel so selfish for not being there, cause i can't even see her like that. But my mom is a strong woman and always has been, she does everything her doctor tells her to. Always on schedule with her meds, and I sometimes maybe it's her time. But you know what she's the one that makes me believe it's not, by trying her best to fight this.

Hospice to me is bascically the last option and giving up the fight. I don't want her to suffer but i strongly believe that my mom is someone like you. A cancer survivor.. And if not, I just want to know that me, my sister and brother did everything for her life.

Do you have any suggestions or anything to help.. i would appreciate it so much.. Thank you again for even taking the time to read this.. please email me evelynchan2004@yahoo.com or casia2468@aol.com... or call me 323- 691-4741... Please help

ASchlechty
Posts: 2
Joined: Sep 2012

Hey... My dad was diagnosed with an advanced stage of gallbladder cancer that has spread to the stomach, diaphram, liver. He had his first chemo treatment of gemzar and cisplatin last week and he will have another one next week. I was wondering if you have any words of encouragement I could share with him? He is pretty depressed about the way he feels and how much his life has changed already. Thank you!

evelynchan2004
Posts: 6
Joined: Jul 2012

I have read alot of what you have wrotten, and have posted on blogs before.. You are such an inspiring person to have share your experience and giving people hope.. That's so great of you.. And i'm so happy for you and admire what you do for other's that you don't even know..

My mom is undergoing her 2nd treatment with chemo. She has gallbladder stage four, and her first treatment didn't work. Her first treatment was gemzar and cisplatin which :( Her onocoligist is treating her with 5fu and now it is her 3rd treatment. He said that if this treatment dosen't work his next step is hospice. She going in 2 weeks for her ct scan to see if it working. Her doctor said before treating with 5fu that the success rate is low.

I can see how much my mom is suffering where my heart just breaks. And sometimes I feel so selfish for not being there, cause i can't even see her like that. But my mom is a strong woman and always has been, she does everything her doctor tells her to. Always on schedule with her meds, and I sometimes maybe it's her time. But you know what she's the one that makes me believe it's not, by trying her best to fight this.

Hospice to me is bascically the last option and giving up the fight. I don't want her to suffer but i strongly believe that my mom is someone like you. A cancer survivor.. And if not, I just want to know that me, my sister and brother did everything for her life.

Do you have any suggestions or anything to help.. i would appreciate it so much.. Thank you again for even taking the time to read this..

sahil29feb
Posts: 1
Joined: Nov 2012

Dear Lily50.

Nice reading your article about Gallbladder cancer, i feel you are very lucky that you overcome from such a circumstances, just wanted to have some information in details about the same as i am going through the same stage. My Mom is been diagnosed as a gallbaldder cancer on stage 4. Presently the plan of treatment is Chemotherpy which we already started and 3 session is over. As per the advise by doctor we have to go through 15 session. It would be great if you can pass the plan of the treatment as you did , as i could save my mom. Further if you wish to send the mail you can send to sahil29feb@rediffmail.com , waiting for your early response.

Regards
Sahil Chetry

mohammad@medico
Posts: 2
Joined: Jun 2013

Hi dear Lily
my name in mohammad from Iran. sorry my english not good, sorry
You are my source of hope and life,
 my father have gall bladder cancer stage 4, we know almost 1 month
ago, surgery not good because his dr told me the cancer metastas to
lymph node (N2) but organs ( Liver and pancras) is clear and no
metastas to there, they told me prognosis is so bad nearly 6 month and
Im in shock and upset.
however we want start chemotheaphy but the dr told us this treatment
dont better survival and I hesitate that start chemotheraphy or not.
please help me for this subject
also My brother lives in Germany and We try to go to this country for
treatment, in my country drug that use for this deasease is GEMZAR,
and i know you too use this drug
I very happy and glad to see your comment in forum and hope you feel
good always in your life and reach to all dreams
dear lily my people in imy country say 120 years you live and see
wedding your children :D
I wish this for you
with the best wishes
Mohammad, Esfahan, IRAN

mamaji's
Posts: 1
Joined: Aug 2013

Hi,

Im very moved after reading your story, you helped me to log in and register myself in CNS.

 

My mother is detected with stage IV GB cancer and doctors says its not operable now, they have done stenting to reduce her jaundice, as due to sever gastric obstruction she got jaundice. However now the doc is not very open, neither he is answering all my questions.. he just says that sine she is non operable, she would be stented so that her jaundice comes down and then they would give her 4 cycles of chemo and then do a CT and in case there is reduction remove the cancer.

 

Im so depressed...Im presently in Mumbai, India...can you suggest me in case I should speak with any doctor in america and in case he can help me..also how much would be the cost to all this...

 

Im sorry to be asking so many questions..but is there a way out for me..is all I want to know and if yes then how!

 

Always be happy!!!

 

akiladevi
Posts: 1
Joined: Jun 2014

pls send your mailid

justne
Posts: 3
Joined: Sep 2009

that you are doing well since your diagnosis in 2005. My mom was also just diagnosed with stage IV gallbladder cancer. They removed her gallbladder 2 weeks ago but they say she has it in many places. Could you please tell me other then your gallbladder where else did you have the cancer. She will be seeing 2 different doctors for treatment recommendations next week. So much is going thru my head I'm not sure if I up or down at times...

klnh0126
Posts: 13
Joined: Nov 2009

My Mom was also recently diagnosed with Gallbladder cancer. They tried to do a resection but found it has spread to the abdomen wall and did not continue with the operation. They are calling it stage IV. She is scheduled to start aggressive Chemo on Dec. 3rd at the Cleveland Clinic. The Chemo they are using is Gymzar and Oxaliplatin every 2 weeks. What are they doing for your mom? How is she doing with the treatments?

loveourmom
Posts: 2
Joined: Sep 2009

Hi. I'm wondering how your mom is doing and whether you received any additional information about treatment and what people are and aren't doing to medically deal with this horrific disease. I hope your Mom is doing well. Thank you.

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

Hello,
To all readers and posters to this discussion board, if you would like add me as a friend and we can talk via the CSN Email or if you prefer send me your Internet Email address and I will respond. View my profile and ask me anything you want. You all have my support and prayers through this difficult time.
Lily

fik2010
Posts: 7
Joined: Jan 2010

MY MOM WAS DIAGNOSED WITH GALLBLADDER CANCER STAGE 4 PLEASE EMAIL ME I WOULD LOVE TO TALK TO YOU AND FIND OUT WHAT YOU DID THANK YOU

Linda1949
Posts: 13
Joined: Jul 2010

Hello Lily50,

On June 1st I had my gallbladder removed for gall stones and afterward was told that it was cancer. I am scheduled to have surgery for a liver resection on Tues. July 6th. I am feeling well, but my doctor believes that the cancer is in the liver bed where my gallbladder was removed. The CT scan did not show any evidence of metastices (sp). I am told that the "standard" is this surgery with followup on Chemo and radiation. I have had well meaning friends and relatives ask me why I don't do the chemo first because the surgery is so invasive. I noticed that you had chemo before surgery. Can you tell my why you chose this form of treatment first. The doctor tells me there aren't any real studies about this form of cancer. I am very confused and don't know now if I am making the right decision to have this major surgery. I would appreciate any advice or suggestions. By the way, I don't fit the "usual" patient for this, as I am a caucasian female. Thank you,

Linda1949

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

Good Morning Linda,

Have they told you what stage they are identifying the cancer as? There are alot of people who have surgery first and then do chemo and radiation. This is a good thing. Usually it has been my experience in talking with others that if they are doing chemo and radiation first it is because they need to have shrinkage in the turmor first before they can even be considered for surgery. I did not have an option or was able to make a choice for surgery or treatment. I had to wait for my turmor to shrink. I couldn't have radiation as my liver was already compromised. From diagnosis to surgery it was 11 months of waiting, hoping and praying. I would have jumped at the chance for surgery because then you are only dealing with cancer cells that have moved on through your body and not the initial site of the turmor.
What the doctor has told you is true, the information about this disease is outdated and dismal at best. If you feel that this decision is right in your heart than don't let well meaning family and friends talk you into something that really they have no idea about. It is easier to stand on the sidelines and give opinions but they are not the ones who are facing these tough decisions.
By the way, I too didn't fit the "usual" patient profile as I am a caucasian female like many others on this forum and at the time of diagnosis I was 46 years old. Again I will say that the information that the doctor's have is outdated.
What part of the country are you located at? People who post on this forum are all across the US, Canada and International too. If you have questions just ask, this is a scary time and we will try to help you the best we can.

Take Care
You and your family are in my prayers.
Lily

Linda1949
Posts: 13
Joined: Jul 2010

Lily,

Thank you so much for your quick response. This has been a nightmare! The Drs. think I'm a stage 3 at this time. I am scheduled for surgery tomorrow (7/6/10) They will look first with a camera and if no other cancer is seen in other organs then they will go forward with the liver resection, node removal and clean up the area where the gallbladder was. If they see cancer in other areas then I guess I'll be stage IV and the surgery will not be done. After surgery I'll have chemo and possibly radiation. I had a 2nd surgical opinion at City of Hope and they also recommended surgery. Some family members disagree and want me to fight this with chemo only or homeopathic methods. But I feel that if I don't have the surgery then I didn't do everything possible to fight this. I feel very confident with my surgeons but not so much with my oncologist. I have only met him once and he has never treated GBC before. My insurance is with an HMO so I don't have many options. Did you have an oncologist who is experienced with GBC? I'm 61 years only and live in Southern California. You're experience has made me feel so much better. No one in the medical field has given me anything to hope for. It's been all gloom and doom! I'll contact you after my surgery. Thanks for your thoughts and prayers. You have been a blessing.

Linda

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

Good Morning Linda.

If you feel that this is a nightmare, that's because it is. You feel like you will never wake up from this terrible disease. Good Luck tomorrow, it is a pretty common procedure for them to go in and look around before making the decision to proceed with the liver resection. Let's hope for the best that the surgery will take place. There are some really good places in Southern California. I had my surgery done at UCLA. In my home state of Nevada they have no one qualified to do this type of surgery. It was only a 6 hour drive so I was willing to travel anywhere to have my surgery done. I agree with you that you have to make that decision for yourself no matter what anyone else says. I believe in homeopathic methods also but as my oncologist told me that chemo and radiaiton is the science of this disease and art is the surgeon's hands. For me it was a true statement. It is hard to put your life into someone's hands that you are not comfortable with, but I have talked to alot of people that either didn't like their surgeon or their oncologist. It is quite unusual for eveyone to get along. Yes, my oncologist has always had an interest in GBC which I think gave me a little bit of an edge. You are 61 years young (not old) and since Southern California is all about healthy living then you are probably in realitive good health. I hear again and again that the doctor's are all gloom and doom but that is their issue and not ours. We have to have Hope if we are able to beat this and doctor's have no right to take away that hope. Let me know how it goes, I will be praying for you.
Take Care
Lily

Linda1949
Posts: 13
Joined: Jul 2010

Lily, I am Kathleen, Linda's sister. She had her surgery on Tuesday as planned. Drs. did not find obvious signs of cancer on other organs. They took a wedge of her liver at the gallbladder site, small sample of bile tract and the lymph nodes. The preliminary pathology just came in and shows the liver and bile tract free of cancer, but some cancer showed up in lymph nodes (which were removed). Linda is doing well, and recovery is coming along. Family has been taking turns staying with her all day and night to keep her spirits up and cater to her every need. We missed seeing her dr. when he came in with the news today and won't be able to talk to him until Monday. What do you think? I am very hopeful that she has a chance. Do you happen to know what might be the type of treatment she will look forward too? This site has been a "God send" for her. I appreciate your support to her this last week. You are a true angel! Kathleen~

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

That is very good news indeed. I, too, had my gallbladder removed with its tumour and a big chunk of adjacent liver plus a few nodules on the upper intestine (see my profile and responses on this discussion board). All malignant. They are waiting to start chemo once the incision site has healed completely (it has been almost 3 months). I had an MRI 2 weeks ago and the results show no malignant tumours anywhere so I think they want to do chemo to "clean up" whatever might be there that is too small to see in an MRI or hidden. Keep us posted on Linda's progress.
Cheryl

Linda1949
Posts: 13
Joined: Jul 2010

Thanks Cheryl for your response! I will let Linda know about your fight too. It is so very comforting to have others to talk to!

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

Linda & Kathleen,

What wonderful news! Sorry that I missed your post. I will try to do better. But I see my good friend Cheryl stepped in. Linda is very lucky to have such a strong family support group to help her along with her recovery and next treatment steps. She has taken a positive step towards dealing with this disease. Generally speaking chemo and or radiation will be the next steps. Since there were some cancer cells in the lymph nodes that were removed based on my own experience I had to do some more chemo after my surgery. That way any stray cells can be cleaned up. Tell Linda that I'm praying for her and hope she has a speedy recovery from the surgery.

Take Care
Lily

Linda1949
Posts: 13
Joined: Jul 2010

Thank you Lily!

Linda is coming home from the hospital this afternoon. I had to fly back to Texas already, but Linda knows I will be back in a flash when she needs me too. The Dr. wants her to come home with the PICC line they had to put in because her veins kept collapsing. She is concerned because of the care that needs to be given to it and she doesn't have an oncology appt for another 10 to 12 days. She meets with the Radiologist next Tuesday. Her spirits are high and now that we both purchased iPhones, we are texting back and forth, playing scrabble and just having a good time despite this disease. I appreciate both you and Cheryl's support. This board's existance certainly needs to be advertised by the surgeons and oncologists. Hope is what we all want, and I know Linda and I have found it here. Thanks for all you are doing to help others. Kathleen~

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

Hi Linda & Kathleen,

Yeah you are going home! Standard 6 to 7 days for surgery and recovery. Means no issues from the surgery. What a great sister Kathleen is, back in a flash that is true love. Lot's of people have PICC lines that they take care of themselves or they have a nurse come to their homes. Is that an option for you? The consultation with the Radiologist will give you the answers to the questions that you have. Make a list of the questions as you think of them in the next week that way you won't be tongue tied when you go there. That also goes for the Oncologist too. iPhones are a good way to keep in constant touch with each other. I don't think that many surgeons and oncologists have the time or put forth the effort to see anything outside of their own little world. I'm so glad that we have given you some Hope when everything that you read is bleak at best. Take Care of yourself and keep talking to all of us. We do care about you.

Lily

Linda1949
Posts: 13
Joined: Jul 2010

Hello Lily and Cheryl,

This is Kathleen again. Linda is having issues with diarrhea, and just doesn't feel well. She has told her doctor and the oncologist, but they say to just take immodium. She isn't feeling well, and is concerned about starting radiation with having this problem. Getting her body back to accepting solid food again has been a challenge. Do you or anyone else know of any "techniques" that might help her through this? This all started when the hospital gave her a salad immediately after she had been on iv's and a liquid diet for almost two weeks. She was wondering if anyone else had these issues after the liver resection surgery. On the good side, her blood work came back with very good numbers. Thanks again, for the support my sister has been getting here. Kathleen~

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

Hi: I certainly did but I was in intensive care at the time. I threw up 2 big bowls of whatever (sorry guys!) after being taken off IV's. They brought me cereal - I tried just a bit and wham, ugliness time! It was mostly bile because they had accidentally cut into my bile duct when removing the gallbladder and resectioning the liver. After that they wrapped me in a big warm blanket and I slept for 6 hours and woke up ravenous. I ate a whole plate of plain boiled white rice with some cooked carrots mixed in. Didn't stay in my body long though - very bad runs (including when the surgeon and his team dropped by to see my progress!). They gave me some pills to encourage the bile to leave my system fast. I don't think the salad was a particularly good idea! Not too much in the way of bulk and you never know with lettuce what might be on it. I had no appetite for quite a while (they say that is because of the compromised liver), like many weeks, but forced myself to eat - boiled rice, high fibre meal replacement drinks, nutritious smoothies. There are some things I still can't eat/drink like coffee. The runs didn't last very long (then you get the other problem of constipation!).
Yeah re the blood work! And what a good idea re the IPhone - I don't even have a cell phone!
I start chemo on August 10 - can't say I'm looking forward to it but something that I must do of course. I'm not getting radiation as there is nothing to radiate.
Keep us posted Kathleen.
Cheryl

Linda1949
Posts: 13
Joined: Jul 2010

Dear Cheryl,

Thanks so much for your help. You have corresponded with my sister Kathleen on several occasions. I am finally up to blogging myself. I finally feel human again. My surgery was on 7/6/10. I met with the radiologist this week and they want to radiate along with chemo. I don't have a set date yet but think that I will probably start around the same time that you will start chemo. I have met with an oncologist but he was gloom and doom and hasn't treated it GBC before. I have a 2nd opinion scheduled for next week and at least he has treated GBC. I'll have to pick one of them as my oncologist. They seem to think that it doesn't matter who you pick because they go along with established protocol. Does your oncologist have experience with this cancer? I'm anxious to see what drugs you get. I'll let you know when I find out what I will be getting. I'm not sure if it is different drugs if I'm getting radiation or not. Not looking forward to it but want it to just be over with! Thanks for your help and encouragement.

Linda1949

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

Hi Linda and Kathleen:

Kathleen you are such a good sister, helping Linda in any way that you can. I think that diarrhea is one of the major side effects of this type of surgery. I lived on Immodium for quite awhile. As far as food goes again I agree with Cheryl, rice, smoothies and meal replacements are the way to go. The ability for her body to digest food is now totally different. You have to learn to be more digilent regarding what you put into your mouth. I love salads but I was told not to eat them while I was having treatments and my surgery. I basically didn't eat salads for two years. Like Cheryl stated you don't really know what is living on that lettuce. Also I was told not to have any fresh flowers in my house once again because of what was living on them that I couldn't see but would end up being toxic to my body.
Glad to hear that her numbers were good. That is very positive. Linda needs to give herself some time to heal from such a radical surgery and just take it one day at a time. It does get better but it won't be soon enough for her. You have to be patient. This disease isn't something that can be fixed right away. It takes time.
Let us know how it is going. Linda took a huge step in making the decision to go thru the surgery and now it is on to the next phase.
Take Care

Lily

Linda1949
Posts: 13
Joined: Jul 2010

Dearest Lily,

Thanks or all your help. I'm finally up to responding myself. I know that my sister Kathleen has shared with you my health status. The diarhea is better now. Still have to be very careful what I eat. You sure can't count on the hopital. They said to just go home and eat a normal diet. Wrong! I have met with the radiologist and it seems that treatments are recommended along with chemo. I will meet with the oncologist again next week to discuss. I also have a 2nd opinion with another oncologist at the same HMO that has actually treated GBC as the other ocologist I saw has never treated it. They claim that it doesn't make a difference if the Dr. has treated it before or not as they just prescribe according to established protocol. They are all very gloom and doom so thank God for you and others on this blog with encouraging news. I am so fortunate to have great family support. I was never alone in the hospital. My sister Kathleen even leaned over the top of my bed during an earthquake to shelter me! My incision is healing great and I'm ready to move on to the next step (radiation and chemo) and get over it. I'm doing what I can to eat well and walk to make myself as healthy as I can before starting additional treatment. You are the only bright light in all this mess so thank you so much for being there for us.

Linda1949

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

Hi Linda: We can correspond during chemo and compare! I will be on gemcitibine and cisplantin, like Lily was. Her treatment was more aggressive than I'll be getting - mine is 6 cycles, a total of 12 treatments. Day 1 will be the two drugs together over about 5-8 hours, Day 2 will be 7 days later and only the gemcitibine over 1 hour. Then 3 weeks "vacation". Then Cycle 2 same as 1. So about 8 months. This is the standard treatment for Gallbladder Cancer in Canada as far as I know. There was a clinical trial done in Toronto this year that compared treatments using cisplantin with either gemcitibine or with capecitabine and the gemcitibine combo worked better so they discontinued the trial. The gem/cis combo was also recommended by the Harvard Univesity cancer centre. I am curious, though, why you are getting radiation if there was no indication of any tumours left (if the cancerous lymph ones were removed during surgery?). Lily, any comments on this? I was told by my oncologist that radiation would serve no purpose if there is no tumour(s) large enough to radiate.
Re the doom and gloom oncologist who hasn't worked on this type of cancer and the one who has - well, I guess I would want some experience there, someone who was positive, and someone who I could relate to and above all liked. You don't need doom and gloom!
Wow! an earthquake while you were in the hospital bed. Brave sister!

I'm so glad you made it through surgery so well.

Cheryl

Linda1949
Posts: 13
Joined: Jul 2010

Cheryl,

I'm finally set up for radiation and chemo together (adjavunt therapy) starting on Monday 8/16/10. It will be 6 weeks since my liver resection surgery and node removal and the incision has healed great. Hope the incision doesn't reopen with radiaition as I guess that sometimes happens. I will be taking oral Zeloda (Capecitabine) during radiation (25 treatments) and then after a cooling off period of a month I will be taking I believe Gemcite and Cisplatin for the remainder of my chemo cycles. The radiation is aimed at the node bed area. I had 15 nodes removed and 12 were malignant. Anyhow that's the treatment plan. Have you started chemo yet? All of the side effect literature sure is scary but I'm trying not to dwell on it now. Just want to get through this and get it behind me. Let me know how it's going with you.

Linda

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

Hi Linda: Sorry I haven't responded earlier than this but somehow I've been very busy getting lectures ready for fall term and as usual waiting for the nurse to unpack/repack my incision and seeing the surgeon and oncologist. Still can't start chemo because the incision hasn't healed completely (been 4 months now!). I see the oncologist again on Sept 9 (school starts Sept 13). I had hoped to be well into it by now but ... At least I've had time to get as healthy as possible and to get caught up on life. I'm not getting radiation because there is nothing to radiate. I'm going to ask though about radiation for the nodules on my upper intestine - there are only 1 or 2 left (they removed 1 for analysis). My chemo protocol will be 6 cycles, day 1 of cycle 1 the two drugs together (5 hours), day 2 of cycle 1 seven days later just the gem.....(2 hrs), cycle 2 starts 3 weeks later and so on. MRI or CT scan at the end of 6 cycles which will be about February is things get going in September. I too am worried about the side effects but some people have none, some people have lots. I went to a chemo workshop - there are different side effects for each drug - the gem...is the most gentle. The only good thing is that they give you a DVD player so you can watch movies! I will have people drive me there and back, at least at first.
I am off to Saskatchewan to visit my 94 year old mom for a few days.
Please keep me posted on your journey.

Cheryl

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

Hi Linda,

So glad to hear from you! Thank Kathleen for me for keeping us updated on your progress. She sounds like a great sister, and you are lucky to have her. That is a true statement when you say you have to be careful what you eat. As you get farther into chemo and radiation you become more and more cautious with everything you do. Your goal is to recover from this terrible disease and go on with your life. It may not be the same life you had before but it some ways it can become a better life for you. Stress and negativity will no longer have a place in your life. You will no longer have time for it. I think that the treatment plan protocols have both radiation and chemo lumped together. But I think that it depends on the person's circumstances. Some people have both before surgery or after surgery and others not at all. I think it depends on the stage of the cancer also. If you like the second oncologist better than the first one than I would choose him. I would feel that it is better to deal with someone who has experience with treating gallbladder chancer. But again that is just my opinion, and you need to make your own decision regarding what is best for you. I think all the doom and gloom that the doctor's project is just based on what they have read. It is hard to be positive about something that they haven't seen much success with. But that is just because they haven't met all of us. We are quite a positive group here.

It is wonderful that you are taking the time to look after yourself. But be mindful that you just had major surgery and your body needs time to heal and rest a little bit. Don't forget to work on your mental attitude also. That is very important. I'm not saying that you won't have blue days, but just remember that you have every right to feel a little down but the next day will be better and remember that we are here for you.

Take Care
Lily

Linda1949
Posts: 13
Joined: Jul 2010

Lily,

Thanks for all the information and support. I was feeling pretty blue there for awhile but am feeling much better now. It's been 5 weeks since my liver resection and node removal and I have healed pretty well. I will start chemo (oral Xeloda) and radiation on Monday 8/16/10 for 25 treatments. They are radiating the node bed area where the malignant nodes were removed. The plan is to rest for a month after the 25 treatments and then start a combo chemo cycle with 2 drugs that there has been some success with for GBC. How was radiation for you? The side effects for chemo and radiation both are pretty daunting but I'm hoping that I won't have too much trouble. My greatest fear is that I won't be able to finish treatment but I'm trying to be positive. Just anxious to get on with it! Thanks for all your support. I'll let you know how it goes.

Linda

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

Hi Linda,

Don't despair you will have good and bad days, that you can count on. I'm so glad that you haven't had any issues with the surgery, it really is great news. Good luck on Monday with the radiation and chemo. Get a calendar and mark off the treatments as you complete them that way you always have a visual of how far you have come. I didn't have any radiation as my liver was in bad shape. My treatment was a little different than others because in the beginning I wasn't a candiate for surgery. I had to complete 10 months of chemo only having 1 week off a month. My turmors had to shrink alot in order for me to have a radical resection surgery (it was done by a liver transplant surgeon that I was told was a pioneer for this type of surgery). After surgery the pathology report stated that some of the lymph nodes that they removed still had some cancer cells in them. That meant 4 months more of chemo for me. You have to bring out that inner strength that you have inside to continue to fight and then recover. Staying positive is part of the battle, and try and break the treatment down into manageable pieces for your own sanity. You have already been through so much just keep going. Keep in touch and if it becomes overwhelming I know that Kathleen would let us know what is going on with you. Tell her I said HI!

Take Care
Lily

maudsie
Posts: 54
Joined: May 2010

Hello Linda. I have corresponded with Lily before, but just today I have been following this thread and wanted to chime in my best wishes as you start your chemo and radiation today. My liver resection (cancer invaded the section of liver they removed, no where else detected) was two years ago, followed by Xeloda and radiation. As Lily says, there are good days and bad, but actually no really bad days for me. I was thinking that i would have to organize a team of friends to drive me to and from my daily radiation appointments 30 minutes from my house, but actually I was able to drive myself every day. In general I was a bit tired, less energy than my "normal" self, but i could do errands and pretty much enjoy myself. After a while, some weeks, the Xeloda started giving me a kind of stomach discomfort, but again, not really awful. Everyone's experience, of course, is individual. After these treatments, my protocol was Gemzar. I am now more than 2 years from my diagnosis, feeling great, no sign of cancer, but of course i get regular scans and blood tests to keep track. My next CT scan is Aug. 31. Naturally I am anxious about it. I will be interested in hearing how you do. I also write on the cancer-compass message board, you can look there for more stories and advice. Advice from me, besides what you have already heard: keep a journal so you can keep track of how you are feeling, both emotionally and physical (symptoms, side-effects).
Maudsie

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

Hi Maudsie,

Good to hear from you. No matter how many scans you go through it is one of the most nerve racking things you have to do. I will say a prayer for you that you will hear the words, No Malignancies. Do you have a complete scan, chest, abdomen, pelvis with and without contrast? I'm sure if you are like me it really doesn't bother you to drink that awful stuff. I'm glad that you are doing so well.
Take Care
Lily

Miguel007
Posts: 1
Joined: Dec 2010

Since spices are limited I'm hoping maybe someone on here with a similar problem can shed some light on this. I'm a seventeen year old college student, and though my diet is very healthy with the exception of a few things I'm working to eliminate gallbladder Stay away from fatty foods. I did have mine out. Lucky for me, I had just had my first child and my OB figured out what the issue was. I was diagnosed and had surgery within 2 weeks. My mom suffered for 5 years before they figured out what was wrong with her.

Take care people

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

Hello,

Welcome to this discussion board. I am a little confused with your posting. Have you been diagnosed with gallbladder cancer or since you have had your gallbladder removed are there some concerns that you have? Is your mom still with you or did she have a cancer diagnosis?

Congratulations on the birth of your child. It is a very blessed event.

What kind of information are you looking for? We will be happy to help you.

Take Care
Lily

FlDino
Posts: 11
Joined: Nov 2009

She went into the hospital with excruciating back pain and was jaundiced. After 2 and a half weeks they decide to remove the gallbladder, after one doctor said she had cancer and another didn't. She did, and it has apparently gone throughout her body. She has swelled up in her abdomen and her legs are now swollen, mostly for lying in bed so long. There's so many doctors and they all say different things. One wants to drain the fluid, another doesn't. After all this she is now on a respirator...for the 3rd time. It isn't good. Someone today said she has a 3 percent chance. What does that mean? For how long?

At this point we (she and I) just want her strong enough to come home. She wants to go at home, not in the hospital.

I'm hoping she makes it to even try chemo to put some quality back and extend for however long, even if for a few weeks.

It's good to hear some beat the "time frame". It does give a glimmer of hope but not much in my case.

Anyone try supplements? I read mega doses of D-3 help greatly and heard this morning that Selenium and Turmeric have actually beaten cancer.

finbar
Posts: 26
Joined: Aug 2009

My wife had this rare cancer. We learned lots but too late. The most important thing: the first treatment is the most important, called 'first line'. Thereafter the body becomes more resistent. Yes I have a friend that is doing very well after rejections from several major treament centers. She is on her third year and is fully active. Her doctor is George Fisher at Stanford. Need any further info, you can contact me at alb212@gmail.com

fik2010
Posts: 7
Joined: Jan 2010

Yesterday my mom was diagnosed with stage 4 gall bladder cancer pretty much the doctor told us it will take a miracle for her to get through this.the cancer has spread to her liver colon and pelvic bone. we want to give her some hope.I printed out a story and read it to her to give her some hope .how far was your cancer or where did it spead is can you let me know anything that might help us help her .you can email me at foklak@msn.com

klnh0126
Posts: 13
Joined: Nov 2009

fik2010 My mom was diagnosed with stage IV gallbladder cancer also back on Oct 21rst. She was told she is not a surgical candidate because it had spread to her abdomen. Did they take your mom's gallbladder out? Are they offering Chemo as a treatment? My mom started chemo in early December and has had 4 rounds. She is on Gemzar and Oxaliplatin chemo drugs. She has been handling it pretty well although they did decrease the dose last round due to the side effects. I am sorry for your mom's diagnosis as I know it is devastating to say the least especially since we had no signs or warnings. Her gallbladder was full of stones and had to be removed which we thought was routine until the path report came back.

fik2010
Posts: 7
Joined: Jan 2010

KLNHO126 My mom is not a candidate for surgery and no they did not take her gallbladder out.They are offering chemo but said if the chemo works it can increase her life by 1.5 years and if it does not work then she has 6 months but my mom is very strong person so we are praying she beats the odds.I am very sorry to hear about your mom and will keep her in my prayers.thank you for your information.

Emma4
Posts: 1
Joined: Feb 2010

My heart goes out to all of you family and friends and also the victims of this horrible cancer. My dad was diagnosed with stage4 gallbladder cancer 1 month ago. It is heart breaking to watch this once, active man, turn into a shell of pain and sickness. Like most of your loved ones, he is not a candidate for chemo. My question to all of you is how was the patient's pain and nausea during the last difficult times. For us, my dad has been in severe pain(with pain medication barely helping) and unexplained nausea. He is back in the hospital because he has been unable to hold food or liquid down for 4 days. This is a constant problem for him now and getting worse all the time. I have researched side effects of this cancer in its last stage but have not been able to find any. You all are in my prayers.

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

My heart goes out to you for the difficulty in dealing with this disease. I have a question for you, since he was just diagnosed recently have you gotten a second,third,fourth,etc opinion? No two doctors ever say the same thing. There are many treatment centers out there who are willing to go the extra mile if you are willing to travel down this hard road. This type of cancer is very aggressive and it is right up there with pancreatic cancer. There isn't alot of information out there because most people were in the advanced stages when diagnosed including myself. It can cause severe pain and nausea that you wouldn't think possible. I hope that your Dad is able to have the hospital stablize him so that he can explore some options. There is hope and treatment out there you just have to find it. I'll pray for him.

klnh0126
Posts: 13
Joined: Nov 2009

Lily50

My mom was diagnosed with gallbladder cancer stage IV this past Oct. It was discovered through a routine gallbladder removal. An attempt to remove remaining cancer and resection was attempted but during surgery it was discovered it spread to the abdomen so surgery was no longer an option. She is undergoing aggressive Chemo every 2 weeks. Oxaliplatin and Gemzar and handling it better that I expected. We were so concerned to get started with Chemo so it wouldn't spread further that we didn't really explore another opinion. Everthing you read is so bad and getting an appointment can take so long we hopped right into the chemo. Have you heard of people eventually becoming candidates for surgery? Her oncologists says she will never be a candidate. Can you share more details of your personal experience. Where had your cancer spread and was your gallbladder removed? I'm encouraged by your words.

Tracy R.
Posts: 6
Joined: Feb 2010

My husband, best friend, lover, companion, my life, soul mate; was diagnosed with stage IV gallbladder cancer on Oct. 23, 2009 and told the prognosis was 12 months at best, could not remove gallbladder as had metastasized to stomach lining. We did the same thing, hurried into treatment as the oncologist stated that it was a fast growing, aggressive cancer and needed to be treated as such, while also stating that surgery was not an option that the treatment would be for palliative only (reduce symptoms the cancer would cause and extend his life hopefully for a few extra months). He was put on Xeloda pills (2 AM and 2 PM) and after 4 days on that - while still taking the Xeloda - outpatient chemo of gemzar and taxatere, continued taking Xeloda and same chemo the following week, then an overnight chemo the next week with cisplatin added. Had his first cat scan early January which showed some recession and tumor shrinkage so we asked if he could get his gallbladder out at that time as I had read that was the only chance for survival. The oncologist stated that he could get it out but that she highly recommended that he did not as there would be too much chance of infection and that even if he had it out the prognosis would still be the same. She recommended continuing on another round of the same and to have another cat scan early to mid April when the 2nd complete round is done. Should we have pushed more for the gallbladder to be removed? My husband's cancer was written down as "metastic adenocarcinoma of biliary origin". He turned 54 in December and I am 50...so close to our "Golden Years" together with plans of traveling - finally - after raising 6 children. I cannot lose him!! Just ordered the Gerson Therapy program of dvd's and our new Health Master has just arrived. I will be watching the dvd's and buying organic fruit and vegetables to make into fresh juices that he must drink all day. Has anyone else tried this? Results? He has been pain free, still active and eats a lot to keep his weight on even when he says the food tastes like metal he still eats...he is a fighter and so am I.

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