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Gallbladder Cancer - 2013 (Any Stage)

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

Hello Everyone!  Happy New Year! 

2013 will be a year of many blessings for all of us. 

As usual (4th year in a row) here is a new thread for our rare GBC diagnosis.  I’m thankful to say I’m still here (7 years- no recurrence) with all of you, even if last year I wasn’t on top of all the discussions. But there are many others willing to pick up my slack.  Sometimes you have to take a break from things as you can lose your perspective. 

I think mine finally came back.  Even if I wasn’t posting that didn’t mean I wasn’t reading everything.  Let’s keep all the discussions flowing, as we all need each other.  Sometimes I think the advice we get from others is better than some of the doctor’s advice.   

It’s a new year and just like last year maybe we can all introduce ourselves to anyone new coming to this discussion thread.

 

Lily – 53

Diagnosed 2005 – 46 Stage IV

Chemo 2005-2007

Surgery 2006

No recurrence

Everyday is a blessing!

 

Take Care

Lily

Monarch64
Posts: 22
Joined: Apr 2012

Hey gang,

Mom is having her 2-year CT scan tomorrow.  Results on the 18th (week from Thrusday).  We know that things are good and have faith that the results will prove us right.  Scanxiety still manages to nip at me from time to time. 

Best to all! 

Charmi

Comsalee's picture
Comsalee
Posts: 5
Joined: Mar 2013

Murray, Cheryl, Lily & Charmi:

Thank you so much for the support and encouragement -- it was the beautiful people found on this website that once again helped me pick myself up off the floor!  To be clear, my cancer is T2N1.  On April 3rd I returned to OHSU to have the surgical staples removed from the 3/15 resection.  My surgeon tells me I am healing up really well.  Later that day I met with an oncologist, who recommends a 3-month course of IV-Gemcitabine with a concurrent Capecitabine pill.  Afterwards I"ll under 5-6 weeks of radiation. Because I live 3.5 hours away from Portland, I have been researching oncologists in Eastern Oregon/Washington, and will be meeting with one within the next two weeks.  After this visit I felt really good, and here's why:  I am the kind of woman who needs INFORMATION, and above all else, a PLAN.  Got both, now!  Smile  If I can see it, and believe it, I will prevail.  I can, I do, I will.

 

Wanda, sorry to meet you under these circumstances, but you've got me in your corner now.  Charmi, I've been praying for your mama.

 

Maureen

(P.S.  I thought I already posted this message, but didn't see it anywhere -- sorry if it turns up again, or somewhere it shouldn't)

 

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

Hi Maureen,

That is what we are all here for.  To help each other through this journey.  Information is power, and a plan makes it easier to focus on a long term goal. 

Glad you feel better and now put on those boxing gloves and go fight! 

Take Care

Lily

 

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

I just finished my 6th treatment out of a total of 8 for this cycle of Folfiri. My numbers are steady and the doc is happy. May have to hit this stubborn node with radiation after we finish the chemo. I am in great spirits. During the last month my daughter became engaged to be married on 10/1014. I am helping with lists, photogs, limos and music. I look forward to walking her down the aisle that day. Another great reason for me to continue to fight like hell. 

Welcome and good luck to you Maureen on your journey. There is alot of help and support here on this board. We have proved that never say never is a fallacy. People here are making great strides in this fight against a relatively unknown type of cancer. 

Good luck to all, prayers to all and keep up the fight. If you would like, I am on Facebook. Feel free to friend me and we can go through this together. I wish good health to all of us on this board and hope that one day it won't be needed. 

 

Rocky Sweeney

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

Hi Rocky,

Congrats, you are 3/4's of the way done.  What is a little radiation at this point?  Annoying! 

Congrats to the father of the bride.  How great will it be for you to walk her down that aisle?  I would say spectacular!!  Another great memory for you to look forward to.  We all have to have milestones that we want to achieve.  Its one of the things that will keep you going.  I'm so glad to see that this terrible disease has not been able to crush your spirit.  It is so important to have a positive mindset.

I have sent you a friend request on Face book (Lillian Gregg) just so you know who I am. 

Prayers are so powerful; I know they help all of us. 

Take Care

Lily

 

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Latest update....... Went for treatment #9 yesterday. Have one more in mid May and then we do a CT scan. Understand this is my third round of chemo since May of 2011 so we have been up and down for quite awhile. Currently on Folfiri (as I pat my little tube strapped to my side). My Cancer Antigen test all last summer was normal (under 50). Suddenly in Nov it rose to 282. CT scans revealed some of the remaining cells in my one of my lymph nodes were growing. We went back on chemo (1st round -Gemzat, 2nd round - Folfox, 3rd round Folfiri) in Jan. My first CA-9 went down to 182 in Feb. Yesterdays test came back a 97 so the treatment is working and we again are moving in the right direction. Just have to stay positive and keep fighting. Sloan Kettering is my hospital and I thank God for my oncologist Dr. Eileen O'Reilly. 

Best wishes to all, old and new, and just don't give up EVER.

 

Rocky

 

 

 

 

 

sueteen
Posts: 1
Joined: Apr 2013

After doing a search on the internet I came across this forum and would like to share some information about my mom who was diagnosed with this disease and as well as find out any successful therapy done as there has been little information out there. My mom is relatively young 57 years old, been pretty asymptomatic.  In March 2012 she was diagnosed with gall bladder cancer and had a cholecystectomy done with parts of involved liver and lymph nodes removed. She then started on 6 cycles of gemcitabine/cisplatin. She had a CT scan that was all clear and rescanned 3 months later which showed a 6mm recurrence in the liver.

After discussion with her oncologist, surgeon and radiologist they decided to perform a radio frequency ablation on the spot seen on the CT scan (insert a needle through the liver and sort of burn it off using high frequency). 3 cycles of Xeloda / Irinotecan (CPT11) was then given. A repeat CT scan showed a growth in the spot up to 1.3cm. So a change in chemotherapy was decided upon by the oncologist - she received Xeloda / Oxaliplatin 3 cycles.

After this 3 cycles, the repeat scan showed a further growth in that spot up to 5cm and new lesions have been found in the liver as well as porta hepatis.

So now we are on a crossroad deciding what is next for her

Her oncologist has recommended to step up the therapy to Folfirinox  (5FU/ Folinic acid/oxaliplatin (85mg/m2) / Irinotecan (165mg/m2) as extrapolated from data from pancreatic cancer. We are a little hesitant as these drugs have yet to have shown effectiveness with my mom all used in the previous 6 cycles she had however this time is going to be a mix of it. I have notice in this forum that some people are actually on this regime.

We met another oncologist for a 2nd opinion who recommended either Taxol or Paxus (Both of which are paclitaxel, but the oncologist mentioned that Paxus is a stronger type, Paxus seems to only be marketed in South East Asia). Has anyone from here tried this drug? I have so far found an article on it if anyone is interested to read up on it.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3506779/

Surprisingly her markers so far are negative. My mother is currently being treated in Malaysia. Any input would be greatly appreciated. 

 

Regards,

Sue

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

Hi:  I have gallbladder cancer with mets to the peritoneum and liver.  I was diagnosed in Oct 2009.  I had no symptoms.  I had surgery in April 2010 to remove the gallbladder, its tumour, and part of the liver. I had one series of 12 treatments with cisplatin/gemcitibine which didn't do much to control the mets.  I then had two series (14 treatments) of folfirinox (oxaliplatin + irenotecan + 5FU pump) which did stabilize the tumours.  I have not heard of anyone else having this treatment for gallbladder cancer mets until your post! Unfortunately, the oxaliplatin almost destroyed the lining of my colon and I had a perforated bowel last May - was on life support for 3 weeks and in hospital 5 months.  I don't know how one checks if there is damage to the colon from folfirinox (colonoscopy?) but this treatment does seem to work on the mets to the peritoneum. 

As far as I know, the Taxol treatment is for mets to the peritoneum that have spread from the ovaries and for primary peritoneal cancer. 

Keep us posted.

Cheryl

MrsCDV
Posts: 1
Joined: May 2013

Hi Cheryl,

My brother, 40, was diagnosed about a month ago with StageIV GB cancer. Its mets in liver, lung, bones, low spine. He starts chemo on Monday. I was so scared because of all the stats I read until I came across this blog. He has 3 young children and wife plus a parents and siblings that are supporting him with love and faith. thank you for sharing your story

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi All,

i haven't posted for ages but wanted to give you an update on my husband.

In May 2011 (he was 44) Steve was diagnosed with stage 4 gallbladder cancer which had grown into the liver and bile ducts. Surgery was attempted at Johns Hopkins but the tumor was much larger than imagined involving a lot of the liver and so was deemed not possible. Steve started his chemo (gemzar and cisplatin) in the June and tolerated it well. For a while nothing much happened, his CA 19 -9 dropped a little (it was in the 200's) and scans showed no really shrinkage but no growth or spread either.

In May 2012 nearly 10 months into chemo the tumor showed a marked decrease in size and the CA19 - 9 had dropped significantly. The chemo contined!

In November 2012 with cancer markers in the normal range the CT scan seemed to suggest that the tumor might be even smaller. Our wonderful oncologist at Johns Hopkins decided it was time to talk to the surgeon again after a PET scan showed no uptake in the abdomen. Still the chemo continued!! 

In February 2013 after another encouraging CT scan the surgeon agreed that exploratory surgery was in order which took place 8 weeks ago. The surgeon was amazed at what he found, the tumor had indeed shrunk by an incredible degree and this time he was able to operate successfully removing the gallbladder, resecting the liver, bile ducts and lymph nodes. The first scan 6 weeks later looked good and the margins were clear!

In addition to nearly 20 months of chemo we did change our diet after reading Anticancer (by David Servan Schreiber). Nothing cranky just good healthy food. Steve has also continued to exercise, running and biking up to his surgery as well as working. Who knows how much the diet and exercise helped but it is likely that at the very least it made it possible to cope with so much chemo.

It's early days I know but I wanted to share a bit of good news. Steve was told by our local hospital (who found his cancer) that he had maybe 8 months to live, this was a man who two weeks prior had run a 10 mile race!  Our Oncologist at Johns Hopkins whilst never giving us false hope has always been positive and ready to help us fight. He is my hero (well one of them any way, my husband is another and then there is the surgeon).

Sorry for the long post, its just that I know how much hope I got from reading this thread in the past two years so I wanted to share.

Debbie 

 

 

 

preethiafc
Posts: 6
Joined: May 2013

Hi ,

Lucy. That was really and inspiring post. My mom is also diagonised with gb cancer spreading liver and pancreas just 3 weeks back. Found your post really useful.

 

Cheers,

Pree

Ja59
Posts: 14
Joined: May 2013

Hi All,

I am not a survivor yet, as I was diagnosed with GBC in December last year. I had a keyhole operation for gallbladder stones, where a malignant polyp was found. Surgeon also found a lesson in my liver, which happened to be a metastasis. I was offered a further Liver resection, though doctor said, that it will not cure me and I will die from liver failure anyway. I was very scared, but since I generally felt well, I decided to go to China  and test a new tumor cell targeting therapy, called AACTL. It is very new and still in trial stage, but you can get it for a fee. I sold my house to pay for the treatment and spent 3 months in China, where I was also getting traditional Chineese medicine treatment. I was very well looked after by the company, that offers this treatment and was consulted by some of the best surgeons. I do not know whether the treatment killed cancer completelly or not, but I feel much better physically. My CT scan showed some new changes in the liver, but they look different from usual metastasis. Doctors do not know how to interpret them. I will be having more scans later and will tell you about the findings.

The reason I am writing about my experience is that may be it does kill cancer??? I thought that if I wait a year for the result, some of the patients may miss out on possible cure. The information about this treatment is on this website http://www.cancertherapychina.com/index.php?option=com_content&view=article&id=287&Itemid=120

Please let me know what you think....

Love Ja

Erick
Posts: 1
Joined: May 2013

Hello, How are you? My name is Erik Peterson, I am doing research on new treatments for Gallbadder Treatments. Would i be able to contact you via telephone, because it is so much to go over in a email. Please let me know. My direct email is:  hegemonyinternational@yahoo.com

 

Thank you, 

 

Best Regards,

 

Erik

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

Hi Debbie,

Nice to hear from you again.  Thanks for updating us and sharing such positive information.  Just another great story about what can be accomplished when facing odds that aren't in your favor.  FIGHT with all you have.  Steve will be another Outlier and you and he both should be very proud how well you have done on such a difficult journey.  Sharing Hope for others that are in beginning stages of this disease is the greatest thing that you can do for others.

Thank You.

Take Care

Lily

FrancisClinton
Posts: 2
Joined: May 2013

Dear LucyDoodle,

                   My Mother have been diagnosed with stage 4 gall baldder cancer , we are going to start the chemo by giving gemcitabine drug ,dosage is 1.4 gm as prescribed by my oncologists . I want to know how much dose was given to your husband ? , whether it was given light dose at the begining and later it was  increased ? and what  medicines he took during chemo for staying healthy ? and also tell me about the diet , and finally how is your husband now ?

Thank You,

FrancisClinton,

My email-id:francisclinton93@gmail.com

ChicagoBirder's picture
ChicagoBirder
Posts: 1
Joined: May 2013

Hi All,

Wow - the last 3 weeks have been something else!  I was just diagnosised with Gallbladder Cancer (Andenocarcinomoa) that broke thought to the liver.  I'm pretty young and healthy, but bummed about this.  I had the cancer surgerically removed via lyperscopic surgery 2 weeks ago, but have yet to talk to an oncologist...  My surgeon says he got everything he could "see", but obviously there could be cells leftover. He also didn't take the lymph nodes out. He also told me that I couldn't have any Tx done until I recovered, and now I'm stuck making appointments this late in the game.  I feel I should have insisted on having an appointment much earlier as they knew I would be okay to at least talk about TX options and timetables 10 days after surgey.  My hospital is a NCI certified location, so I assume it should be at least ok...

 

Sorry to meet the group and immediately start asking questions, but this is the first day of my looking into all of this and I need advice!

 

Questions:  

1) any "experts" in the US that should be consulted about both surgery and followup Tx?  I am thinking of Dr. Ghassan K. Abou-Alfa at the Sloan-Kettering Cancer Center in NYC.  Also, Johns Hopskins Dr. Kurtis Campbell looks like a good surgeon

2) Will I need a post-surgery scam for any other second opinion?  I assume this will be the first thing to be done by my local oncologist, once I get in to see them.

3)  Any other Advice?

 

Thanks and I look forward to contributing in the near future and not just asking questions!

 

ChicagoBirder guy

maudsie
Posts: 54
Joined: May 2010

Hi, I am Maudsie, and I have been absent for a while, and just today catching up reading some more recent posts...including yours.  I just wanted to jump in and suggest SURGERY. not chemo or radiation, not yet.  You should have an OPEN surgical operation, where a lot more can be seen and observed and a lot more can be collected and removed (like some liver and some lymph).  Laparoscopic is insufficient and actually unsafe where there is known cancer.  Most of us had a laparoscopic procedure and then went back for open surgery.  Get that done soon, get a top-notch hepatobiliary surgeon with experience with GBC ...and then when you heal from that, and more is known about your stage of cancer, chemotherapy can be discussed.

My two cents.

Good luck!!!!

Ja59
Posts: 14
Joined: May 2013

Hi All,

I just want to add, that some doctors believe that liver resection should be done with chemotherapy backing. Their reason is that liver is so reach in blood supply, so it is easy to disseminate cancer cells . Though there is no GBC specific chemotherapy.

Cheers Ja

lirok's picture
lirok
Posts: 49
Joined: Jun 2011

Sorry for your news. I am currently being treated for the same at Slan Kettering in NYC and my surgeon was Yuman Fong. He operated on me in Jan of 2011. My oncologist is Dr. Eileen O'Reilly who has treated me since. I am still getting chemo treatments as we speak. If I can help you my e-mail is sweeneyrocky@gmail.com. Good luck and hang tough.

 

 

Rocky Sweeney

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

Hi ChicagoBirder Guy!

I'm Lily and I'm a 7 Year GBC Stage 4 Survivor!  I will be the first one to jump on Maudsie’s bandwagon.  You need to find a surgeon and oncologist that have experience with GBC.  Many doctors have never even seen a GBC case.  Go to a larger facility.  My Extended (Radical) cholecystectomy was done at UCLA.  I know that others have gone there along with USD, Mayo Clinic, and Sloan Kettering just to name a few.  Use this time to research and get appointments set for seeing experts in this field.  Get second, third and fourth opinions if necessary.  You need to be comfortable with the doctors that will walk with you on this journey.  This road has many twists and turns, along with up and downs but we will be here to help you. 

Ask anything that you want and we will try to help you to the best of our abilities.

Hope & Faith will carry you through.

Take Care

Lily

 

Jean160
Posts: 26
Joined: Sep 2011

Hi all; and to the new folks out there.  Looks like more have joined this fight against gallbladder cancer and I am sorry to hear that.  I agree with Maudsie and Lilly (and I’m sure many more); that to get a consult at a specialty center is very important (Sloan Kettering is an excellent source),  and I know there are many more (I had my second and “open surgery” at University of WA).  Most regular surgeons have never seen gallbladder cancer and there are no recent studies to show more optimistic statistics so it is easy to hear doom and gloom.  But surgery has come a long way in how aggressive gb cancer can be approached but it is important to go to a hepatobiliary surgeon who has treated gb cancer (ie. A major facility).  Sometimes chemotherapy has to come first, but I agree to get several consults/opinions from the specialty centers.

Debbie, it is refreshing to hear your good news!  Go Steve!  And Rocky I am glad your treatment is working.  Whoo Hoo! 

Chicago birder guy.......  the best to you as you fight this.  By the way, my husband and I are birders and to celebrate now 2 years from my gb cancer surgery and 1 ½ years away from chemotherapy (so far, so good), we traveled to Michigan and Canada for a warbler migration birding trip.  It felt so good to walk in the woods and appreciate everything around me including all the colorful birds in their spring plumage.......  enjoying  and appreciating life!

Keep fighting everyone.     Jean

preethiafc
Posts: 6
Joined: May 2013

Hi ,

Does any body aware of this "dendritic cell therapy". Does this is helpful in gallbladder cancer. My mom is having gallbladder cancer and it is not operable.  I am really looking out for some possible treatment.  Please help me out.

Can you please suggest me some opinion on this?

 

Thanks,

Preethi

Ja59
Posts: 14
Joined: May 2013

Yes, I know about this therapy. I went to China to get it, but was offered a better treatment-AACTL, based on the same concept. I could've had both, but it is expensive, so I had only ACTL. With every injection I felt like life is getting back into me. I live in Sydney, AustraliA. My cancer was removed a month before this therapy, but I had a liver deposit and doctors said, that there was no point in operating it, as if there is a large metastasis, there could be many small ones, which they can't see. I went to China to remove this deposit via crioablation as well as immunotherapy. Crioablation is non invasive, but has the same effect. It took me about 3 months and $70,000, but this was my last chance. I feel much better now. Doctors now say, that they may have made a mistake.  Please read more on website http://www.cancertherapychina.com/

Please let me know if you need help in all this.

Cheers Ja

preethiafc
Posts: 6
Joined: May 2013

Hi Ja,

Thank you so much for your reply.  We are residing in India and came to know about this dendric cell therapy. I saw the website you have mentioned. Do they treat gall bladder cancer? Because it is not mentioned in their site.

 

Thanks,
Preethi

Ja59
Posts: 14
Joined: May 2013

Hi Preethi,

I think I was the first oversease patient with this disease. They say that it is very widely used for Chineese people! Gallbladder is treatable as well. Some people respond better then others to it I sent a piece of the tumor to them to check if it has anticancer specific antigens to be eligible for AACTL. For dendric cells or DC-CIK it is not necessary. My understanding is that the difference between the treatments is that with AACTL they grow substantial number of anticancer lymphocites and infuse them back into the patient, billions of cells. In the case of AACTL they grow only about quater of billion of anticancer cells, even less, but they store memory of cancer antigen and teach other cells to kill cancer, but may be it is too primitive explanation. One cubic cm of tumor cell contains a billion of cells. I saw the same treatment offered in India as well. Dendric cells treatment is still expensive -30,000USD plus hospital fees. Cryoablation of metastasis additional 10,000. They do not garantee anything, but say that it prolongs life of a patient with cancer. And this is what we all want. I am pretty sure that cancer cure is not far away and we just need to hold on as long as we could to see it.

Cheers

Ja

Ja59
Posts: 14
Joined: May 2013

Hi All,

I'd like to share one more experience with you. After I had a Surgery - gallbladder removal for GB cancer, I developed abdominal spastic pain. It was getting worse over time. I thought that I developed IBS -irritable bowel syndrom. I tried everything for it but nothing worked. In the end I Coud eat only bread and oats. My doctor suggested that common bile duct may be compromised and suggested stenting of it. I refused as I do not have jaundice.

Thinking that I have gastritis, I started taking Cimetidine. The improvement was instant. It is my 4th day and I can eat everything now and have no pain in the abdomen. Then I found this article http://cancerx.wordpress.com/2008/11/09/off-label-cimetidine-as-a-cancer-treatment/

May be it does work? Does kill cancer?

Cheers Ja

preethiafc
Posts: 6
Joined: May 2013

HI Ja,

Thanks for sharing the info. My mom was diagnosed with GBC in May and  currently undergoing immunotherapy and avastin now. Her appetite is decreased a lot and she started to lose her weight.  We actually took a PET scan in july and it showed hypermetabolic hpodense mass lession in the gallbladder fossa with a necrotic center extending to liver suggestive of metastasis.

What does necrotic center in this case mean? Can anyone please brief me about this and also whether avastin would do good on her. She also feels severe back pain.

Her Hb count has dropped also. I am really afraid and my brain is not at all working. Can  you please suggest some diet to improve her Hb count and immune power.

 

Thanks ,

Preethi

 

hillaryjoRN
Posts: 32
Joined: Apr 2012

Just wanted to update everyone, mom had a CT scan in June which came back NORMAL! So she is 16 months cancer free! Praise The Lord! Hope everyone is doing well:) God bless    hillary

Ja59
Posts: 14
Joined: May 2013

Hi Hillary, great to know that your mother is cancer free!

Preethi,

I am not sure about the diet. May be blood transfuson will help? The fact that she is loosing appetite is not good. Looks like she has general intoxication. Probably because the gallbladder can not removed? Necrosis may be a formation of an abscess due to the tumor lysis. Does she have night sweats? May be it is possible to operate her? I think that I had a liver abscess after the gallbladder removal, which drained itself into the abdominal cavity. I felt when it erupted, as the belt across my abdomen, which I had for a month,  broke and I could breath better. Though the pain in the right side of the chest persisted for another 3 months, until I went to the acupuncturist. It was gone after 2 sessions.  I thought I was dying. Fever was 42c for 3 days. I couldn't walk and was very weak  for a months after this. Antibiotics saved me. May be try antibiotics? Not sure about avastin. I also started drinking Essiac tea.

Kristal Reis
Posts: 2
Joined: Aug 2013

My dad is stage 4 gall bladder / bile duct cancer.  He was diagnosed about 3 months about.  He did 9 weeks if Gemzar and Cisplain (once a week for two weeks and then third week off)  The cancer did shrink a little bit so they said it is working and will continue same regimen.  

Does anyone have success stories they can share with me?  Specifically, what kind of treatment or natural hollistic care worked or what doctors do they recommend?  We live in Massachusetts but are willing to travel anywhere in the world.  

Thank you for your advice.

Kristal

Draginlady
Posts: 9
Joined: Sep 2013

Kristal....I was diagnosed with stage 3b gallbladder cancer last April and had my gallbladder removed.  June I had 1/3 of my liver and 8 lymph nodes removed....2 of my lymph nodes had cancer in them but my liver was clear.  I had the same drugs and regiment that your Dad had starting in August 2012 finishing in February of this year. There is a United Kingdom gallbladder study programe you can google and they are also using the same two drugs.  I am now one year cancer free and my Doctors say breaking records every day.  Having no insurance I decided to remain in Ft. Myers, Florida for my treatment.  My surgery was done by Dr. Kowalski and my Oncologist is Dr. Rodrigues at the Florida Cancer Center right here in Ft. Myers.  I couldn't be happier with the care I have received this past year and owe my life to both of these Doctors.  Cancer Centers of America have some very advanced medicine for rare and advanced cancer.  I couldn't go there but perhaps your Dad's insurance would be accepted there.....check them out.  Good luck and tell him a posative attitude is the best medicine....think healthy and you will be healthy.  Statistics do not define us!

Jan

Kristal Reis
Posts: 2
Joined: Aug 2013

My dad is stage 4 gall bladder / bile duct cancer.  He was diagnosed about 3 months about.  He did 9 weeks if Gemzar and Cisplain (once a week for two weeks and then third week off)  The cancer did shrink a little bit so they said it is working and will continue same regimen.  

Does anyone have success stories they can share with me?  Specifically, what kind of treatment or natural hollistic care worked or what doctors do they recommend?  We live in Massachusetts but are willing to travel anywhere in the world.  

Thank you for your advice.

Kristal

Ja59
Posts: 14
Joined: May 2013

Hi Christal,

Sorry to learn about your father. For some reason nobody replied to you.....

Personally I only believe in Biotherapy or immunotherapy, but it is still experimental. So, no survivors as such... There are clinical trials in the US. I had this treatment in China. They are very advanced in cancer therapy in general, though some hospital's wards conditions are not the best. But it did not matter to me, as I wanted to live. It is 4 months since I finished the treatment, so early days. 

Cheers Ja

Draginlady
Posts: 9
Joined: Sep 2013

Lily......I am so happy that you have been blessed with 7 more wonderful years of life.  I too am a gallbladder cancer survivor...one year this month.  Last April I ate a whole pizza by myself which kicked up my gallbladder which sent me to the ER two days later.  My gallbladder was full of cancer and I never would have discovered it if not for the pizza.  They removed my gallbladder April 17th and June 26th I had 1/3 of my liver removed and 8 lymph nodes.  Two of my lymph nodes had cancer in them making me stage 3b. I started chemotherapy in August last year....finishing in February and have had cat scans every 3 months since then.  I can now go 6 months without a scan.  Having stage 4 gallbladder cancer you are aware that our odds of making it 5 years are very very low.  We both beat the odds.  Reading your story has given me reassurance and I thank you for stopping in and posting it.  I wish you peace and happiness.

Jean160
Posts: 26
Joined: Sep 2011

Just thought I would check in with everyone.  I am happy for the recent good news from several of you regarding your recent check ups and good results!

Just got my latest scan results for follow up from gb cancer:  which showed a stable MRI without evidence of recurrance.  Now I am 2 ½ years from original diagnosis and follow up surgery and 2 years after completion of chemotherapy (cisplat and gemcitebine).  Whoo Hoo.......  scanxiety  over for the time being.  Whew.  Now to get back to life again!

 Keep strong;  keep the faith...  Jean

preethiafc
Posts: 6
Joined: May 2013

Hi All,

My mom was diagnosed with GBC on May 1st and she is undergoing immunotherapy and avastin for the past 2 months. But for last 3 days she is having fever. I am really worried about this and wanted to know what needs to be done next. Yesterday we went to meet our oncologist they have given her some antibiotic and multivitamins.Inspite of this she still has fever. Can anyone please guide me ?

Thanks,
preethi

Comsalee's picture
Comsalee
Posts: 5
Joined: Mar 2013

Hello Everyone!

It has been 6 long months since I last posted here.  As you might recall, my cancer was an incidental discovery after my gallbladder was removed laproscopically in February.  On March 15th I underwent a liver resection at the Oregon Health Science University in Portland, Oregon, after which my cancer as diagnosed as T2N1, or Stage 3B -- my liver and bile duct were cancer-free, but it had gotten into 2 of the 8 lymph nodes removed.  My oncologist presecribed a treatment plan based on a clinical trial that ended in October 2012 (SO809), which called for 12 weeks of Gemcitibine/Gemzar (weekly IV infusion of 1800 mgs) and 2500 mgs daily of Capecitabine/Xeloda, with 2 weeks on, 1 week off.  This was to be followed by 4-6 weeks of 180cGy 5/days a week dose of IMRT (Intensity Modulated Radiation Therapy), with concurrent consumption of the Xeloda pills (with no breaks).  This treatment began in early May, after I had healed up sufficiently from the surgery. My body could not withstand 2500 mgs of Xeloda, and it was reduced to 2000, and then again to 1500, where I was able to finish up with my last chemo treatment on July 17th.  On July 31st I began the next phase, and underwent 28 treatments of radiation, along with the daily Xeloda pills,  finishing up on September 9th.  It was an aggressive treatment plan -- for an aggressive cancer -- and I feel like I have done everything I could do to deal with it head on.  Throughout this entire journey, I have been blessed to have the love, encouragement and support from every corner and era of my life -- which has helped me to maintain a positive attitude and fighting spirit!  Mynext appointment is on December 2nd, when I will be scanned to verify that my cancer has NOT COME BACK.  :)

Stay strong, all!  Please keep me in your prayers, each of you will certainly be in mine.   

Maureen

   

LucyDoodle
Posts: 22
Joined: Jan 2012

It's good to see so many positive posts. Maureen you are in my prayers! Jean and Draginlady Woo-Hoo, it's good to hear of good scan results

Steve (my husband ) has recovered well from his surgery and is pretty unstoppable really!!

Francis, you posted in August asking questions, Steve's chemo regime was gemzar (like your Mum) and also Cisplatin. His doses were based on his weight. We read Anti Cancer a new way of life by David Servan-Schreiber and incorporated some of his diet advice into all of our diets. It's not a cranky diet just good food, it's well worth a read! If nothing else I think the change in diet helped Steve stay healthy through 20 months of chemo!

Kristal, your Dad is on the same regime as Steve had. We saw only tiny improvements to start with but over time the chemo did such a great job Steve was able to have surgery which was not possible when he was first diagnosed (they tried but the cancer was too wide spread - gallbladder, bile ducts, liver and nodes on his diaphram). He stayed on that same regime for 20 months!

There are lots of recommendations for great hospitals on this thread. We went to Johns Hopkins in Baltimore. Steve has a fantastic team there both oncologist and surgeon. He had his chemo locally and our local oncologist worked with JHs.

Steve stayed active throughout, and he took up yoga which he found helpful to quieten his mind (as did I)

Like so many others we were told Steve's prognosis was horrible around 8 - 12 months. Two years later he is still here and doing well.

Eating well, staying active and most importantly staying positive will all help in the fight against this horrible cancer. That and finding Doctors you have faith in.

Debbie

 

cherleger's picture
cherleger
Posts: 4
Joined: Oct 2013

Hi,

My name is Cheryl and this is my first time on this site.  I was diagnosed with gallbladder cancer on September 9, 2013.  Here is my story:

I live in Massachusetts.  I'm 38 years old and I've been married to my wonderful husband, Mark, for almost 8 1/2 years.  We have 2 beautiful boys.  They are 5 and 7 years old.  

About 10 years ago, I had an internal ultra sound because of kidney stones.  The tech told me that my gallbladder was full of stones.  Since they never bothered me, nothing was ever done.  In December 2011, I had gastric bypass surgery.  I lost about 120 lbs in less than a year.  Since rapid weight loss can cause gallbladder issues, I wasn't surprised when I had an attack on November 20, 2012.  I went to my local ER.  They did a CT with dye and sent me home with pain meds.  I met with my primary care doctor and was told it was my gallbladder.  The said there was a chance this was a one time issue and that if it recurred, we would discuss removal of the gallbladder then.  

On August 31, 2013, I woke up at 1am with that familiar pain.  I went to my local ER again and told them I was having a gallbladder attack.  They gave me pain meds and sent me home.  The pain meds did not help, so I went back to the ER at 4:30pm.  This time they did an ultra sound and determined that my gallbladder was infected and possibly rupturing.  They admitted me and I had emergency surgery the next morning.  

I had a follow up appointment on Septmeber 9, 2013, and this is when I was told about the tumor in my gallbladder.  There were also 2 lymph nodes that came out with the gallbladder and they were cancerous.  I was diagnosed with stage 3 gallbladder cancer and was referred to a medical and surgical oncologist at this time.  I met with both and was sent for a PET scan.  

They did not see anything on the PET so I was scheduled for surgery.  On September 23, 2013, I had surgery to remove lymph nodes and 10% of my liver.  They also ended up having to fix my bile duct and remove a small hernia that I didn't know I had.  When pathology came back, 2 of the 4 specimins had cancer.  There were more cancerous lymph nodes and they found cancerous nodules in my liver.  I was then referred to a medical oncologist at Dana Farber Cancer Institue in Boston.  

I met with a gastrointestinal medical oncologist October 16, 2013.  She explained that my cancer is stage 4 and is not considered curable.  They recommend chemo (Gemzar & Platinol).  They said I will go through a 3 week cycle (1x week one, 1xweek 2, and week 3 off).  They said I will most likely have 3 of these cycles.  Then a scan after the 9 weeks to see if its helping.  I was also told at this appointment that the tumor is visable on the CT with dye from November 2012.  I can't believe that I was never told about this and I am sooo angry!!!  I can't help but wonder if we could have caught this at stage 1 back then.  

That brings us to today (October 13, 2013).  I have not started chemo because they want me fully healed from my surgery.  They are thinking the beginning to middle of November.  So, right now I feel like I'm stuck in limbo.  I find myself crying A LOT!  Everything that happens with my husband or boys, I can't help but wonder if its the last time I'll experience that.  My family and friends have been so supportive, especially my husband.  He is my biggest supporter and he pulls me out of every melt down!  He doesn't care what the doctors say and he's convinced that chemo will kill this!  I wish I could be so sure!  I am trying to stay positive but I am so scared!  

I know that I have just started this long and hard journey...I guess I'm just looking to connect with other people like me.  I'm looking for HOPE that even against all odds, people are beating this disease.  I'm hoping that I can beat this disease too!!!!  

Thanks for listening!

Cheryl 

Ja59
Posts: 14
Joined: May 2013

I have a story similar to yours. Though I am 57 years old and my son is 34 now. I also was diagnosed with stage 4 GBC in December last year. I do not know if chemotherapy can cure the disease, though it does work. There is another treatment, which combines chemotherapy with immunotherapy. Chemotherapy works on large masses oF tumor, but does not work well on small seeds of it. While immunotherapy, namely CTL- cytotocsic T- lymphocytes, kills micrometastasis by stimulating patient's immune system. This is a very promising treatment and there are a few clinical trials in the US. I had to go to China to get it, as we do not have it in Australia. Treatment is easy, no side effects apart from heavy sweats-tumor lysis syndrom. In China they call it ACTL, as they use adenovirus to modify monocytes into killer cells. I had it in December-April this year and feel very good. I did not have chemotherapy, as I did not have big masses left in my body. I did not even have liver resection, only biopsy, which showed tumor cells in the liver. You can read about it on http://www.asiancancer.com/technology-equipment/2619.html or on many American websites. Do not give up, there is cure now. 

Love Ja

cherleger's picture
cherleger
Posts: 4
Joined: Oct 2013

Ja,

Thank you so much for sharing your story and this information with me...I truly appreciate it!!!  I will most definitely read up on this treatment and discuss with my doctors.  I still cry occasionally but have kind of moved on to anger now, kind of like the stages of grief.  I am ready to fight this and will do or try anything.  I'm not ready to leave my family.  As a parent, I'm sure you can relate.  

Its really nice to talk with someone that is going through the same thing.  My family and friends are always here for me and they have been AMAZING but sometimes I feel so alone, like no one understands me.  

I hope you are feeling well and continue to have success with your treatments.  

Love Cheryl :)

Jean160
Posts: 26
Joined: Sep 2011

Hi Cheryl

I am sorry to hear you have to go through this.  This little community of survivors on this site has been a big help to me when I was going through chemotherapy for gallbladder cancer.  I did not run into anyone else with this type of cancer at the infusion center.  The problem is that just reading statistics is not encouraging because there are no prospective studies on gallbladder cancer.  But through these stories you will see other survivors:  people who have had surgery, chemotherapy, immunotherapy and who are still going strong.  I’m sure this has been such a huge shock to you.  You are young and healthy and that will be in your favor.  You have supportive family and that too will be in your favor.  I know when I first read all that discouraging statistical stuff, I was just hoping to live a couple years.  But I now am going on 3 years and my latest scan shows no evidence of recurrence.   So who knows......  ?   I feel well and I went back to work, planning vacations with my family and enjoying life.   Hang in there,   none of this is fun, but you are a fighter and will come out strong.  Keep the faith.   I will keep you in my thoughts and prayers.

Jean

cherleger's picture
cherleger
Posts: 4
Joined: Oct 2013

Thank you so much for sharing Jean!  I had my first chemo treatment on 11/6/13.  I was very queasy the next day but other than that, I had very little side affects.  We went back for my second treatment on 11/13 but my white blood cell count was too low.  They decided to give me another week off and then we'll try again with a lower dose.  This actually worked in my favor because now I don't have chemo the day before Thanksgiving...yay, I get to eat turkey!  :)  

You are right, this has been a HUGE shock and the statistics online are horrible.  My oncologist gave me a few months to maybe 2-3 years.  My husband and I have decided that we don't care about those statistics.  We are just going to fight, fight fight!!  

I am so happy to hear that you are feeling well and your scans have been good...that is amazing!!  I hope that I will be able to say that sometime soon!!!  You are also in my thoughts and prayers!!  

Love

Cheryl 

Erinp
Posts: 4
Joined: Aug 2013

Hi Everyone,

i have monitored this thread to a while now and thought I'd share my dad's story.

He was diagnosed about 4 months ago. He was experiencing pain, vomiting etc and went off to the doctor.

A CT scan revealled a mass which was then biopsied and localised, advanced gall bladder cancer was the diagnosis. He contracted pancreatitis from the biospy, which really took a huge blow- extreme weightloss and illness.

The cancer was said to be incurable and he was referred to an oncologist. He started Gemzar/ Cisplatin regime and after 9 weeks the 8 by 5 cm tumor was immeasurable. 

This is lead him to be referred back to the surgeon whobas suggested continue chemo and perhaps discuss surgery after this next round. She said there is now a question as to whether this cancer is curable, which is exciting. 

She he also said how invasive the surgery (which would be gb and liver resection) is. What are others experiences with this surgery? 

Id love to hear any stories, particularly those in Australia, similar or of some help to Dad's? 

 

Erin

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi All,

Steve had his 8 month post op scan yesterday which looked good. His Ca19-9 has gone up a bit (it was 36 and is now 59) so that is going to be repeated in 1-2 months. It felt like a mixed result, great because the scan was good but a little scary that the marker had climbed a bit.

My question is this, Steve had his surgery in March - the normal liver resection, gallbladder removal, bile ducts removed etc. He has done really well but in the last few weeks he has had a few episodes of stomach pains, with nausea and a feeling of lots of acid in his stomach, I think he is getting a bit of reflux too. It seems to come on in the evening and night. We mentioned it to the oncologist yesterday was going to talk to the surgeeon. We have an appointment with him in about 10 days anyway. Our lovely oncologist said in the mean time if it becomes more severe or more of a problem to call him.

Finally the question......Has anyone else experienced anything like this post surgery?

i also have to share one little story with you, When Steve was diagnosed in May 2011 we were given the awful 8 month prognosis. Last week our son who is now a senior in High School crept up behind me, gave me a hug and said in a whisper "Dad is going to see me graduate isn't he, I never thought he'd be there".  I keep reminding myself how blessed we have been even if the fight is not yet over!

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Erin,

That is exciting news about your Dad! My husband had surgery after 20 months of chemo, the surgeon took a bit of persuading given that he had already tried to remove the cancer when Steve was first diagnosed but the spread was too much. Between us and oncologist we wore him down  though it took about three months and a PET scan before he agreed to have another look.

Steve had a roux-en-y hepaticojejunostomy (they took part of his liver, biles ducts and gallbladder and then fashioned new bile ducts) they also remove the lymp nodes in the area   The surgery takes a while to recover from and they may well want to do more chemo afterwards.

So keep badgering the surgeon, if you read Lilly's story you will hear much the same!

Debbie

 

 

Erinp
Posts: 4
Joined: Aug 2013

Hello,

 

Thanks for your reply!

 

We are heading back to the surgeon next week. It looks like she will do some exploratory surgery and pergaps remove some things while she is in there.

 

His latest scan showed no cancer!

 

Erin

LucyDoodle
Posts: 22
Joined: Jan 2012

Hi Cheryl 

I am sorry you have to be here but wanted to say hello and reinforce what Jean said. The online stuff is horrid. The best thing I found was this forum!

We were told Steve might have 8 months at our local hospital where the cancer was found ( he was 44). I got mad at that point and we went and got some second opinions. We settled on Johns Hopkins because the surgeon there was prepared to have a go at surgery and we liked him and equally importantly the oncologist we saw was wonderful. He didn't view Steve as a stasitic but as an individual.

That was in May 2011 and Steve is still here. The first attempt at surgery was not possible as the cancer was too invasive but a lot of chemo later the surgeon had another go and this time was successful in removing the tumor. We are not out of the woods yet but Steve is still here two and a half years later!

Has any one talked to you about having assays done ( it's through a blood test). It can help identify which chemo therapy might best target your tumor. Steve had it done and as it happened the combination he was on was the one which showed up as most effective. It's not a 100% correct but as our oncologist said it helps point them in a direction they not have considered. You hear the term personalized treatment and this is often what they mean.

Enjoy your turkey :)

Debbie

 

 

 

 

lamuse's picture
lamuse
Posts: 4
Joined: Nov 2013

Hi,

I'm new on here--glad to find a forum on gallbladder cancer! I was diagnosed with 4th stage gallbladder cancer April 2013. I've never experienced any pain from the cancer, never had any problems with my gall bladder.  The cancer was originally found due to vaginal spotting, which led to an ultra sound and the discovery of a 5cm tumor in my cervix (and an orignial miss-diagnosis of cervical cancer). A CT scan would later reveal a 3cm tumor in my gallbladder and a 1.5 cm in my liver and a 9mm one in my back lymphnodes. Once this was all discovered I was told to stop working (I'm a teacher) and immediately began 9 3-week cycles of Gemzar/Cisplatin. I am 55 and quite healthy, not over weight, exercise regulary, and eat fairly healthy. The side affects from the chemo were minimal for me. (I continued to hike 6-10 miles a week, yoga twice weekly, etc.) After 6 cycles my PET scan came back clean, no sign of cancer--tumors gone--or less than a cm as was explained to me. My tumor markers are still slightly high: CA-19=142 and CEA=6.0 after finishing the 9 cycles. 

My oncologist is not suggesting surgery. As we've discussed--what do you start removing? When do you stop? Since it is already 4th stage, my understanding is a new tumor could show up anywhere, right? My gynacological oncologist wants to do a hysterectomy, and will be doing another biopsy before we discuss this further. 

From reading all the posts on here there seems to be a push for surgery. When I talk to a surgeon, they want to do surgery--but then that's their job. As the chemo is working for me, I'm wondering why I would opt to have surgery. I'm quite confused about this. It seems that your dad, Erin, is having a similar experience. 

I'm also curious to know if anyone else has had it spread to their cervix? (no, not your dad, Erin!)

I have also been diagnosed as pre-cancerous in my colon. My next colonoscopy in February will determine if the chemo has affected this. My gastroenterologist doesn't seem to think so, but then none of my doctors thought I'd have a clean scan after only 3 months of chemo. We'll see......

I'll be having my next scan soon and will be starting on a maintanence chemo program. 

Laurel

Ja59
Posts: 14
Joined: May 2013

Sorry to hear your news. What doctors saw in your liver may not be cancer at all. You may not have Gallbladder cancer at all. Even histology is sometimes wrong. Please go for the surgery. Cut out all suspecious areas and have biopsies. Do not trust chemotherapy only. It can't kill all Cancer cells and if the mother cancer is present, it will spread other metastasises and will help to survive the existing metastasises. It will also will not allow your immune system to see and fight them. So, please remove gallbladder and uterus, if possible. If you have appetite and strength, you will win the fight. Since you have a very good response from chemotherapy, it will prevent the spread of disease during the operation. Your cancer markers will go down immediately. Do not trust your oncologist. I also was diagnosed with liver metastasis and was given 3 months to live. A year later there was nothing in my liver. I did not even have chemotherapy or liver resection. Only gallbladder removed and immunotherapy. I also had traditional Chinese medicine treatment and took high doses of propolis 3 g a day for 2 months. Exercise 5 times a week, walk at least 5 km a day and do everything to stimulate my immune system.

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