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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

Ja59
Posts: 15
Joined: May 2013

Merry Christmas everyone!

I just wanted to let you know the outcomes of my ACTL treatment in China. I had a three months therapy in January-April this year in Beijing this year for GBC stage 4 with liver metastasis 2.5 x3.0 centimeters. I had gallbladder removed a month before the treatment. I refused liver resection and chemotherapy and went to China instead.  I had a CT scan 8 months later. It showed that liver metastasis had dissapered. The leading professor in hepatobilary cancer could not believe his eyes.He requested the review of my original pathology, suspecting that there was a mistake and there was no cancer at all. Yesterday the results came back. The leading Sydney pathologist confirmed, that both speciments from liver and gallbladder contained cancer cells. Doctors do not know what to think, but I believe in immunotherapy as I was feeling better and better over the course of treatment.

You can read about this treatment at this website asiancancer.com.  I was treated by the other company - cancertherapychina.com. You can just google CTL cancer or ACTL cancer. CTL means cytotoxic lymphocytes. This is an old treatment. ACTL is just one of its modifications. Trials on CTL are going all over the world, mostly on mice. Only China does it for people with good results. The treatment is only 2 years old and there is no much statistics yet. I'll keep you updated.

Merry Christmas and Happy New Year to you all!

Erinp
Posts: 4
Joined: Aug 2013

Hi Laurel,

 

Thanks so much for your reply. Dad certainly has this attitude. He is very scared about having th surgery, the recovery and the side effects.

 

His most recent scan showed no sign of the cancer (still there, but not detectable by a scan) He is having a break from chemo indefinitely.

 

He will now go back to the surgeon and most likely do some exploratory surgery. If the surgeon can do something while she is in there, she probably will.

 

Erin

 

 

carlyberger
Posts: 1
Joined: Nov 2013

Hi Erin,

I was just wondering what is the latest on your dad.  My dad (age 66) has GB cancer Stage IV, which as been deemed inoperable/incurable, diagnosed in Nov 2013.  He's done 3 months of Gemzar & Cisplatin and his 1st scans were pretty good - no spread and slight decrease in size of tumors.  We were excited, hoping he'd be able to keep going with the regimen with continued success, but he has not been feeling well at all lately.  He's been running a fever off and on, no appetite, he had a very low hemoglobin and needed a blood transfusion, and now he has a blood clot in his leg that is causing his foot to be swollen and painful and he can't walk.  He's very discouraged and it's hard not to blame him, as it's been one thing after another going wrong for him.  He really has barely left the house in almost a month.  I feel so sad for him and don't know how to help him.   It's encouraging to hear a story like your dad's where the chemo has been so successful.  We've been told dad's cancer is incurable and all he can do is chemo indefinitely, as long as he's alive, so it's hard to look past that grim prognosis, but we're still hoping for a miracle.  

Hope your dad is still doing well.

 

Best,

Carly

Diane_60
Posts: 2
Joined: Dec 2013

Hi

I am so glad I found this site, Thank you to everyone who posts their stories, it helps.

It has been such an inspiration reading these stories, I am a 60 year old widow ,I lived in Florida but came home to England for treatment at Guys Hospital in London.

I have just been diagnosed with gallbladder cancer, didn't want to ask the stage, guess I am just too scared. The doctors told me it's not operable, but reading some of the battles you guys have gone through and won, has given me hope. I am trying to be positive, just in the night when I am alone its hard.

My question is,has anyone used a particular diet ? I am trying a vegan, immunne boosting diet and have started walking as much as I can, even though my Chemo doent start until Jan 13th, I am trying to get fitter.

Has anyone any advice to help in this early days?

Also I have heard about Immunotherapy, it is supposed to be very good, does anyone know where it is offered close to the UK? or USA?

Thanks

Diane

curriewalla
Posts: 9
Joined: Apr 2012

Hello Diane_60 

Nice to meet you and sorry it's under these circumstances. I have a relative with gallbladder cancer. I have no medical background. I don't have experience with a vegan diet or immunotherapy - other posters may be able to comment.  

That said, this is how things played out with my relative. He followed what is often described as "conventional" treatment. It's now 3+ years after surgery. Follow up CT scans and bloodwork show no evidence of disease.  

My relative had surgery to remove the gallbladder, part of the liver, lots of lymph nodes and surrounding fatty tissue. He was staged at IIIb, which is advanced, and the pathology showed stage 3 of 4 adenocarcinoma, which is really serious.

After surgery he was able to return to a "regular" diet (he was never vegan) and bowel function returned. He had follow up chemotherapy which impacted how food tasted and the comfort/effectiveness of his digestive system. He wanted to maintain his weight during chemotherapy to get maximum benefit of the chemo. He ate an overall healthy diet and kept up his weight. He did not follow any particular diet, but ate what he was able to eat and wanted to eat. He did not take supplements (vitamins, yogurts) unless recommended or authorized by his doctors because supplements can contain ingredients that interact with and reduce the efficacy of the chemo treatments.

Post-surgery he did go walking which is good exercise (and so I've read stimulates the bowels). 

You may want to read the posts from Lily50, who started this thread. She was diagnosed at Stage IV and was not considered operable. She persevered and got chemo treatments to shrink her tumours so that she was eligible for surgery. She had surgery and (I think) more follow up chemo. I assume that all that chemo she endured wasn't easy, and that life before and after chemo is probably quite different. But she is here seven years later. 

It can be difficult to accurately stage cancer without surgery. For example, the cancer may have metastasized (spread to distant locations in the body by e.g. the blood or lymph systems) but not be something that the CT scan can detect. My relative went into surgery not knowing whether the cancer was localized (turned out that it was) or metastasized. 

By the time that you read this post, it will be 2014. It is not yet evening, as I write. I hope you enjoy some good times with family and friends during this holiday season. 

- Curriewalla -

rvhere
Posts: 1
Joined: Jan 2014

Hello everyone-

I'm not sure if there will be a 2014 group, but I thought I'd start here.

My mom was diagnosed with stage IV gallbladder cancer on Dec 13th.  Like most it seems, she went in for what was supposed to be a simple gallbladder removal.  The surgeon said it was inoperable.  It spread to the liver and the small intestine.  She came home on Dec 23rd and we have a follow-up appt with the surgeon on Jan 6th. (getting sick over the holidays stinks because doctors go on vacation and everything gets put on hold)  We should get the pathology report then right?  She had a short visit from the oncologist while she was in the hospital (I left the room for just 10 min at 8pm...who knew he would stop by then?!) and he was less than tactful or hopeful with my mom. 

My mom is not is the best health.  She is 66 y/o, has diabetes, high blood pressure and is obese. Ironically, she was planning to have weightloss surgery in February.  While her health may complicate things, it should not keep her from fighting this.  I feel like the doctors have just written her off though.  One doctor (again, there were many unfamiliar one due to doctors filling in over the holiday time) asked her what nursing facility she wanted to go to when she was discharged.  He assumed her mobility and health required it when it does not. Another doctor said "Gallbladder cancer? I've never met anyone with gallbladder cancer before.  That's rare. Your vitals look good.  Someone else will be in tomorrow. Have a merry Christmas."  Really!?

Anyway, I am beginning my education on the subject.  My girlfriend was diaganosed with stage II colon cancer Dec 2012 so I have some idea of the process that may take place, but I realized all cases and cancers are vastly different. 

I appreciate reading all of the posts here.  It is the first time I felt hope.  I am pulled between being realistic (at least that's what the medical community calls it) and hopeful (believing she could fight this and even win).  My mom is feeling the same way.  I don't want her to give up, but I realize it is her decision ultimately.  I just want to arm myself with as much information as possible.

What questions should I ask the surgeon on Monday?  What is involved in a second opinion?  Do we meet with the oncologist right away or wait like they want us to for another couple of weeks?  If the oncologist has little experience with gallbladder cancer can we just go find one that does?

We are researching and will be starting an Alkaline diet soon.  Has anyone had any experience with it?  I figure it can't hurt.  It will help her high blood pressure and diabetes at the very least and at best make an environment in which the cancer has to be the one to fight for survival. :)

A long post I know.  I'm confused and the shock has not worn off yet.  Any information is helpful.

 

Thank you,

RV

curriewalla
Posts: 9
Joined: Apr 2012

Hello, this is curriewalla.  I have become familiar with GBC through a relative's experience with this cancer. 

My thoughts, after reading your post:

  • you might want to explore whether your mother could become eligible for surgery in the future by having chemotherapy now to shrink the tumors.  See the posts of Lily50.  That's what she did, however, it wasn't easy.  She had to find doctors who would treat her.
  • if the tumors can be shrunk with chemo, then it's important to realize that the surgery is physically challenging for the patient.  Your mother would want medical advice about how her diabetes and weight impacts her ability to handle the surgery and recovery period.  The liver can regenerate but the small intestine cannot.
  • gallbladder cancer is not common.  Many doctors have not seen a case of this cancer or have only seen it in women age 75+.  You might want to look for a relatively "high volume" treatment center for biliary tract cancers.  But high volume might mean counting the experience over a period of years.
  • GBC is usually an aggressive cancer, so you want to move as fast as possible. 
  • my relative had "conventional" treatment and didn't follow any particular diet. I cannot comment on diet stuff, except to note that my relative didn't take supplements (vitamins, yogurts) during chemo unless approved by his doctors.  Supplements can impact the effectiveness of chemo.
  • many doctors could use specialist training in how to convey difficult information to patients/family, yet still help the patient/family feel supported.  My relative experienced some insensitivity from doctors, but kept his end-goal in mind - getting the best treatment for him.  So he handled things as diplomatically as possible. 
  • be alert to medical professioals not having up to date or correct information before them e.g. once they didn't have my relative's correct weight which was needed for chemo calculations, another time a doctor hadn't realized that certain test results were ready so my relative quickly straightened that out
  • you can help you mom by taking notes, helping her keep copies of various test results (e.g. keep a binder or folder), making lists of questions to ask during doctors appointments.

Take care, curriewalla

 

mrs_stark2u
Posts: 1
Joined: Jan 2014
My grandmother who's 68yr was just recently diagnosed with stage 4 gallbladder cancer.  She is actually still in the hosptal where she has been since 12/20/13.  While admitted she has had several procedures to place stents and now has 2 biliary drains.  Her last CT scan shows liver involvement along with the omentum (which we feel is due to all the poking and proding of the tubes). They strongly recommended no chemotherapy because she would not be able to handle the after effects and they felt it would damage the liver function she has available now. 
Well my grandmother decided today that she would like to start a treatment (knowing the side effects and prognosis). She feels as though if she is going to go down, she is going to go down fighting. Which is the woman I've always known her to be. 
We feel robbed of whatever time we have left with her, because we were truly blindsided by not only the diagnosis but even the lengthy hospital stay that has broken her down.  She’s not eating, not moving around as much and even now has developed a stage 1 pressure ulcer.  We are looking for any help you can give us.  They will be ready to discharge her this week, and we want her to receive the best fighting chance she can get.  I am a registered nurse and honestly having too much medical background can sometimes be a curse.  My entire family is looking to me for answers and I don’t have them.  I know that Western medicine is quick to dispose of you when they think your a lost cause, but she is not!  So we are turning to anyone who can help us now.  I know it may not be a cure but even if its something to help strengthen the liver or increase her appetite, anything will be greatly appreciated. We're even open to herbal therapy.
lamuse's picture
lamuse
Posts: 4
Joined: Nov 2013

So it's 2014 and a year since my stage IV gallbladder cancer was first discovered--in the cervix that is. (only the 5th according to medical journals to have this happen--makes me feel special?) But, most importantly I want to report that I'm doing great. I've really had no serious symptoms or pain. I wasn't even sure where my gallbladder was till it was pointed out to me recently by one of my doctors. My side affects to chemo have also been mild and after 6 cycles (4 months) of chemo my past two PET scans have been clean, no sign of any tumors. My tumor marker is still elavated so I know I'm not out of the woods yet. I'm on "maintenance" chemo"--1/2 dose once a month and surgery now being planned--radical gallbladder surgery and hysterectomy. I continue to exercise--hiking, yoga, mountain climbing-and just got back from a ski trip. I'm sticking to a balanced, healthy diet--but really nothing extreme.

With all the time off I have had time to research and am beginning to read medical journals. Perhaps most of you already know that gallbladder, though rare in most parts of the world, is one of the most common cancers for Chilean women--and is also more common in other "middle class" countries. One of the theories as to why points to the higher incidence of Typhoid Fever and salmonella in these countries. Reading this reminded me that I was diagnosed with a very serious case of salmonella just a couple of years before being diagnosed with GBC. As I don't fit the profile of GBC in any other way, this makes me wonder. Has anyone else had salmonella? I realize I'll probably never know why, but mysteries tend to interest me. 

 

Caseypb
Posts: 1
Joined: Aug 2013

Hello, I am new to this discussion but your post spoke to me.  I have Stage 4 gallbladder adenocarcinoma, unresectable.  Diagnosed August 2013, started treatment 9/9/13 with gem/cis and clinical trial MEK 162 at Sloan Kettering with Dr. Abou-Alfa.  My diagnosis followed months after an ER visit for what seemed to me classic gallbladder attack, but no such diagnosis was made then.  Back to the internist weeks later with GI symptoms which led to diagnosis with H. Pilori infection, had antibiotic treatment which was awful and I still felt bad.  Follow up ultrasound in August showed gallbladder mass and then CT scan, biopsy, etc.  I had suspicious lesions in the lung (1, now gone) and liver (now minimal and "indeterminate").  My tumor has infiltrated the liver but has shrunk 30% with treatment.  I feel well in general and have tolerated 13 cycles of treatment very well with relatively few side effects.  I am 56 years and would like to be as active as you are!  I, too, am interested in mysteries surrounding this situation!  I should add that I am also a breast cancer survivor, 7 years, apparently not related to this diagnosis.  Hope you are continuing to do well, your attitude is terrific and people tell me the same but I do have my worried moments!  My last CT scan showed stable disease but each one reads differently as different docs write up their own way.  Also, my CA-19-9 recently went up after declining but my doctor doesn't say much about that, two other markers are fine.  Glad I found your post, looking forward to learning more on this site!

Elisabetta Conti2
Posts: 2
Joined: Jan 2014

I am new to this blog!. I had my Gallbladder removed because of gallstones on 12/31/2013 via laparostomy. Found cancer stage T2 that was upgraded to T3 after second more invasive surgery on January 14, 2014 were they removed part on the liver adjacent to the Gallbladder bed were they found a tumor, a linph node that had cancer and 4 more that were clean. I live in LA and I am now in Houston at MD Anderson to get a second opinion. I just had a TC scan, new biopsyies of the tissue removed durig my second surgery and it looks like the CANCER MIGHT STILL BE in the resection margin in the liver and one linph node. I was given here a regimen of Cisplatin and Gemcitabine evry 2 weeks. I intend to do the Chemo in Los angeles. Any suggestions? Very difficult to find an oncologist that specializes in Gallbladder cancer. The Doctors told me that this cancer is very difficult to cure, almost impossible and  statistically veru low  of survival which.  I am lost, scared, Please help. I am going back to LA this Saturday and need to start CHEMO ASAP

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

Hi Elizabeth,

I'm in the LA area--Long Beach actually. My oncologist is wonderful--Dr. Vora. Actually a great team of oncologists, but gallbladder cancer is rare, so not they are not specialists in that area, not sure of any that are. I did start on 9 cycles of Cisplatin and Gemcitabine last May, and had a clean scan after only 6 cycles. I was Stage 4, so pretty remarkable. I will be having surgery in a week--the same as your more invasive one, largely as a preventitive means--hoping the cancer doesn't return. Yes, it is scary, but the chemo does really work. I didn't even lose my hair. I also exercised quite regulary and was told this helps with the chemo. I'm interested to know what you found out at MD Anderson. Ignore most of what you read on line, statistics don't apply to you or me. Read the success rates of those on this sight and I'm sure we're both going to make it!

 

Elisabetta Conti2
Posts: 2
Joined: Jan 2014

Hi Lamuse, thank you for your reply and your encouriging words

I met with two woderful oncologists At MD Anderson. They both prescribed the same regimen of Cisplatin and Gemcitabine but at difference from Los Angles, the regimen is every two weeks. I had two cicles, in the first one I had some mouth sores. The regimen was adjusted and on this nsecond one I had almost no sides effects. I also had my Tumor sent to FOUNDATIONONE and from the Report my oncologists told me they learned quite a few specifications regarding my cancer and also about a few other drugs that could be beneficial to my regimen if the original is not working. I will know on my third Chemo if is working

Rich24uk
Posts: 6
Joined: Feb 2014

Hi all,

I've been a lurker on this thread since January when my mum was unfortunately diagnosed with this horrible cancer. This started back in December when she was rushed to hospital with severe stomach cramps, the docs thought it was gallstones and following open surgery they did manage to remove these along with the gallbladder. Unfortunately the Gallbladder had burst and when her lab results came back this was found to be at stage 2/3 gallbladder cancer (moderately differentiated). If it had not burst we would be looking at a much better prognosis but as it stands they are saying that scans show probable spread to her peritoneum in the form of 'seeding' or spots. Docs have given her 12 months with palliative treatment.

We are based in London in the UK and as such are relying on the NHS (our national healthcare provider) to provide mum's care. They are incredibly conservative with their approach and everything we are getting from them is telling us to prepare for this horrible outcome. She has now started her regimen of cisplatin and gemcitabin and just finished her first cycle. She will get 3 cycles then a scan and then another 3 if all is going ok.

They are suggesting that if this does not work that we can look at another chemo treatment (possible 5FU I think).

Mum is tolerating the treatment incredibly well, her digestion plays tricks on her sometimes and she has been getting only very mild headaches, but no sickness or tiredness so far :)

She will not hear of a prognosis and says she wants to take each day as it comes, but for the family it is incredibly hard and we feel like we are on a rollercoaster. We asked at her first oncology appointment about an possible operation and spoke about a peritoneal strip or debulking but the oncologist flat out refused to discuss it and said it was not an option given the amount of stress it would place on mum's body and the fact it had spread. We went for a 2nd opinion and the suggestion waslargely the same although this one said that if the spots could be eliminated then some surgeons may look at it. But again, he was very discouraging of operations. Mum is 56, has never smoked or drank alcohol and is generally in good shape. She is however moribly obese and I wonder if this may be adding to their refusal to look at an operation.

You guys in the US seem to have much more amenable doctors than us in the UK. The impression I have got is that the whole system with this cancer is so risk averse. They will offer the standard chemo and then send you on your way :( I think they just want to keep costs to a minimum as the survival stats are so bad, but mum is not a number and she is fighting this with everything she has.

Lovingmymom's picture
Lovingmymom
Posts: 46
Joined: Nov 2011

So very sorry to hear of your mom's diagnosis.  Unfortunately, we are all on this board for a very similar reason.  My mom was diagnosed with gallbladder cancer in September 2008.  It was found at a routine surgery for gallstones.  It was staged at stage 2.  She had a liver resection and the removal of some lymph nodes which all tested negative for any spread.  We were grateful.

She never did chemo at that time, just went every 3 months for CT scans to make sure everything was okay.  Well, it was until Novembe 2011 when she was diagnosed with peritoneal cancer.  Yes, one little cancer cell had remained hidden somewhere and had reproduced itself enough to detect in the omentum.  She too was not a candidate for any debulking or stripping surgeries due to her advanced age other blood clotting issues.  

During the intial days of her diagnosis, she remained (and still remains) focused on today.  This line of thinking (althoguh counter intuitive for those of us watching from the outside) has made all the difference in her mental state.  My mom was told flat out that the prognosis for this cancer is poor and that she was looking at 7-12 months.  Here we are 2.5 years later and everyday has been a blessing.  Mom continues to go in and out of chemo, taking a break every once in awhile to recoup her strength.  She just started her 22nd treatment yesterday.  She went through the gemcitibine and cisplatin, took it down to just gemcitibine and now is on gemcitibine and oxalyplatin.

She is very realistic about the situation, having made her wishes abundantly clear to all of us BUT we don't dwell on it on a daily basis.  She will be discouraged at times and that's when it's so important to be positive for her.  

I am sad to have to share your rollercoaster ride, but it is what we do as the children who take care of our parents.  Reach deep when you have to, in order to get through and stay positive for her.  There have been a few lessons I've learned: Surround yourself with family and good friends who will be there for YOU when you need it. Don't be afraid to ask for help (a lesson that has been very difficult for me and I'm still not very good at) and BE the advocate for your mom when she can't deal with doctors and hospitals.  Don't be afraid to question your doctors - and if you don't like their answer or approach - find another one (I've fired 3 already). 

The hardest thing of all but perhaps the most important: Don't lose your sense of humor.  Even in your darkest hours when you let your mind go to those bad places - find something that will bring a smile to your face.

Hope you find some answers and I pray she keeps on fighting!!!!

J-

 

 

 

Ja59
Posts: 15
Joined: May 2013

Sorry to hear, that your mom's cancer came back. But how did doctors know that it is cancer? Did they make biopsy? Or she had high cancer markers? May be it is not cancer at all and she is having unnecessary treatment and CT scans. Doctors make mistakes all the time. 

Lovingmymom's picture
Lovingmymom
Posts: 46
Joined: Nov 2011

There was no mistaking this.  They did a biopsy of the omentum and it was the exact same cells as the gallbladder cancer.  Her cancer markers actually remained very low and stable for the two years before they started to creep up.  I actually thank the doctor who was treating her for finding this sooooooo early.  He insisted on CT scans every 3 months for the first 3 years and then the plan was to go every 6 months for the last 2 years until she could say she was cancer free for 5 years.  Her cancer was caught at the end of year 3.  If we hadn't had that schedule, it would have been another half a year before she was ever diagnosed and we all know "the earlier, the better". Docs didn't make a mistake, they provided conservative care which has given her a great quality of life. 

Rich24uk
Posts: 6
Joined: Feb 2014

Many thanks for your reply, it does give hope to hear of others going through similar that are also fighting this. 

What I don't really understand in mum's case is that she is actually quite fit and relatively young, yet the oncologists we saw (both of them) suggested that it would not really add anything to her prognosis to go in and operate, one said we may find a surgeon that would IF they could eliminate the spots on her peritoneum completely but he did not seem hopeful.

When you say your mom is on her 22nd treatment, is that her 22nd cycle of chemo? In the UK we are only offered 12 cycles of chemo (cisplatin and gemcitibine), this can be followed by another 12 of oxplatin + 5fu if mom does not respond to the first line. Mom started her chemo back in February so by the end of summer she will have completed her treatment and that is a scary thought for me, it's almost as if they will put her on the garbage dump after that. Trials here for GB cancer are few and far between, in fact there is not much of anything that we would be able to sign her up for specifically related to her condition (just a few phase 1 trails for advanced cancers).

I've got a good support circle within the family, my sister and partner are both there for me and I know between us we can support her through this. The hardest thing for me is that because this is a cancer that is rare, there does not seem to be much information out there and trying to find a surgeon/oncologist that is prepared to actively treat it is virtually impossible (in the UK at least). We've been to to cancer centers here one, The Christie is supposed to be one of the best in Europe, yet the oncologist could not offer anything more than what she is on.

Mom herself is doing well, she is very positive and is tolerating her chemo great, no major side effects, just a headache or two and a little bit sleepy sometimes. She also gets some constipation but we think that is related to the cocktail of anti sickness drugs that she takes. We are praying that her interim scan in 6 weeks shows progress so that they can continue on her current regimen.

Lovingmymom's picture
Lovingmymom
Posts: 46
Joined: Nov 2011

Mom did 6 rounds of gemcitibine and cisplatin, 15 rounds of gemcitibine alone and 1 round of gemcitibine and oxalyplatin.  (Individual treatments.  There are 6 treatments in a cycle so I guess we're at about 3.5 cycles). We also chose not to enroll in any trials, mostly because they were being held on the other side of the country and she was not keen on traveling. I will admit this truly is one of the RARE cancers and so little is being done in advanced research. We were fortunate that it was found very early.  From the initial gallbladder cancer diagnosis (6 years ago) to where she is now, she has beaten all of the statistics that we could find available on the internet.  The stats need to be updated because we have made wonderful friendships with people around the world (mostly on this site) who are overcoming the odds, everyday.  Tell her to keep fighting!!!!

They didn't offer my mom any kind of surgery/hipec stripping or anything like that, since she was advanced in age and also has some underlying blood clotthing issues.  I can say however, that even with the standard of care (gemcitibine and cisplatin and then just the gemcitibine) she has received 2.5 years of wonderful quality of life.  As a matter of fact, it didn't slow her down one bit.  

We are dealing with some more fatigue at this point, but that comes from the totality of these treatments.  

The only garbage cans in the world are reserved for the doctors that we have to fire every once in awhile.  Mom's main doctors (oncologists) have been very good, but I have fired a few along the way (oh well).  Keep being her advocate and her voice when she just can't process the info.  Chemo does crazy things to the brain and that's why they all need to have someone fighting for them.  Stay strong and kick butt when you need to.  Rely on family when you need a break. 

The chemo never got rid of mom's spots on her peritoneum but for almost 2 years, they never grew and remained stable.  That was the best news we could expect.  Also-you may have to learn to manage your expectations and remember to take the small victories for what they are.  

Keep me posted - remembering your mom in my prayers.

Be Well,

J-

 

 

Erinp
Posts: 4
Joined: Aug 2013

Hi There, 

 

Sorry to hear about your Mum. I know of your anguish. You can read above about my Dad's story.

 

Yes, get a second opinion. Even if it just another government funded doctor, don't sit back if you are unhappy. 

 

About 9 months after my Dad was diagnosed with "inoperabe, incurable" gall bladder cancer, he is likely to get surgery very soon with the goal to cure his cancer. So, do not give up hope.

 

While I know you think it is perhaps your Mum's physcial state that is influencing the doctors decisions, you must be logical and realise how unethical this would be. My dad is a very healthy 59 year old that has bounced back to fulltime work and life since his diagnosis and there is still reluctance to operate.

 

The question is now, "Why take a healthy [not totally, I guess] man and turn him into a vegetable for a year and perhaps kill him through surgery?"

 

Gall bladder cancer is highly incurable and spreads so easily and I am sure this is their concern. But don't lose hope, my Dad has no cancer evident, so that could happen to you!

 

Erin 

Rich24uk
Posts: 6
Joined: Feb 2014

We had an interim CT scan yesterday to see if the chemo treatment was working to date and have been shocked by the results. No sign of cancerous growths anywhere in the body and the spots that had been identified in the peritoneum did no show up! The oncologist has said that these may have been inflammation from mum's original condition (perforated GB) and not cancer as was suspected (although she definitely did have a cancerous GB which was removed at the time of the operation). He also said that it may be that the chemo has worked so effectively that it has eliminated everything that was visible although my understanding of this particular treatment is that the cancer is not usually sensitive enough to be completely removed.

In any case, it's the best possible outcome that we could have hoped for, mum will continue with another 3 months of chemo which she is tolerating very well and if that scan comes back clear, then we can have a break with follow up scans as required.

The oncologist has maintained that surgery is not an option because the spread (if it did spread) would have gone to the peritoneum which would affect too many organs anyway. My mum is also not keen on any surgery (she has been through so much with the complications that happened during the original gallstones illness).

I quizzed him on future treatments also (all the while I was getting angry looks from mum and her partner, but they don't understand that I need to know every scenario so that I can plan and be prepared for what may yet happen). He says the next line would be folfri for up to 6 months, and then after that possibly some other 3rd line treatment at the discretion of the senior oncologist. So I am happier now that we may have a road map to keep mum going for long enough to enjoy seeing her grandchildren grow up :)

Mum was originally told that she would probably not see out a year with this disease based on the statistics from various trials, and without tempting fate this prognosis has now dramatically changed and we are hopeful that we will have her for a good few years yet, perhaps long enough for some other cancer research breakthrough. Never give up hope, and take everying that the onc tells you with a pinch of salt!

Lovingmymom's picture
Lovingmymom
Posts: 46
Joined: Nov 2011

Rich,

That truly is the best news you could have gotten!!  "No evidence of disese", "Stable tumors" or "Not Progressing" are the best words you can hear with this particular cancer. You're right, don't ever give up hope!!!  My mom has enjoyed years more than the initial prognosis would give her and her quality of life is excellent.  My mom enjoys her grandchildren, holidays and all the warm weather.  She doesn't accomplish as much as she would like to in any given day (long term effects of chemo) but she is LIVING, and we are grateful.  

Ask your questions, learn all you can and God Bless you all!

Be well,

Jessica

Rich24uk
Posts: 6
Joined: Feb 2014

Mum had her second CT scan last week and the results were in yesterday. No sign of any cancer :D We are gathering the family on Saturday to celebrate. Mum has successfully completed her chemo treatment and is getting stronger day by day. We are taking her to the Highlands in Scotland in September as treat. Goodness knows she deserves it having been do brave in dealing with this.

She will have another scan in 3 months but until then we are on cloud 9!

shreyoni's picture
shreyoni
Posts: 2
Joined: Jul 2014

my father has been diagnosed with GB cancer stage 4 in june2014. the cancer has spread to both the lobes of liver and surgery is not possible. he has been prescribed 6cycles of chemo -cisplatin & gemcitabine. he has already undergone 1 cycle and is about to start the next cycle. bt his blood reports are not permitting it..his liver function test is going worse day by day which if does not better, he wont be able to take chemo..doc says that cisplatin is becoming too much on him.perhaps have to change it.. he doesnt have a good apetite and is mentally very very low..he is getting really weak. really tough seeing him like this.

Recently I have learned about psorinum therapy. but not sure if it can help.

any help any information from anyone is welcome..it would really help. 

regards

Fighting for hubby
Posts: 3
Joined: Nov 2013

I wrote on the 2014 section seeking advice and help for my husband who was diganosed in November 2013 with GB cancer with mets all over his liver. Unfortunately he died on the 26th June, none of his chemo treatments helpt, de tumors just kept growing.

I am happy however to read of so many of you doing good, I wish all of you goodluck and strenght to continue to fight this monster, 

Good luck. 

Ja59
Posts: 15
Joined: May 2013

It is 20 months since I was diagnosed with stage 4 GBC. I only had gallbladder removed. Refused liver resection, only byopcy, as this operation only helps to confirm the stage of the disease, but can spread cancer like wildfire. It is also very traumatic and has high death rate. I know, I am a surgeon myself. I had three months immunotherapy treatment in China, called ACTL. Also took propolis 8 Gr. a day for 2 months. Refused chemotherapy and morphine. For pain had acupuncture and massage- worked very well. My overall condition improved, but i noticed increasing symptoms of common bile blockage. Ultrasound looked like stone blockage, but surgeon was sure, that it was tumour growth And offered an operation. They can't think about anything, but cancer. Being a doctor myself, I did not believed him and performed liver cleansing, based on Apple juice. It worked, stone passed, though I had a terrible pain attack. I've got to the hospital and both ultrasound and CT scans showed nothing- no tumour, no metastasis. This was a year ago. I work full time now and exercise 5 days a week, I mean serious training- boxing, weights and yoga. I re-checked my hystology tests, the results were the same - cancer With liver metastasis. If doctors did not make a mistake, looks like ACTL is a cure.

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

Hi,

After having surgery in March, 2014, for removal of gallbladder, parts of my liver, and hysterectomy, tumors still remained in my liver. I've been back on chemo the past 4 months with my tumor markers going down, but scans showing tumor growth. My team is recommending a type of vascular radiation known as SIR-Spheres, which sends radiation directly to tumors in liver through an artery. It is considered far less invasive than surgery. I'm wondering if anyone else has had this procedure? I"m hoping for the best, but of course there are no promises as the doctors know of no one in my situation who has had it. It is more typically used for colon cancer.

Laurel

 

Ja59
Posts: 15
Joined: May 2013

Hi Laurel, 

I do not know about this treatment, sorry. Just wanted to ask, why did you have to wait that long for the removal of the gallbladder? I am a surgeon and do not believe in surgery for liver metastasis- it will make matter worse. My advice would be to have Crioablation, or freezing of the large metastasis. The procedure is done under ultrasound guide, so the tumour should be seen on the ultrasound scan. If there is one tumor, that is seen, there could be multiple, which you can't see and they will start growing when immune system is weakened. I suggest to have immunotherapy (CTL). It exists in the USA. I did it April 2012 in China. Did not even had any chemotherapy. Haven' been to the doctors for a year, so did not have any scans. But I feel good, so I guess everything is OK.

Diane_60
Posts: 2
Joined: Dec 2013

 

Hi Ja59,

I read your account of your treatment with optomism and I am so happy for you and glad you are still feeling good. Do you mind if I ask a few questions about your treatment? I was diagnosed with GBC in November 2013 while living in Florida, I did not want to know the stage or prognoses ( I know I am just a big coward!) but I found it easier to concentrate on feeling well than dwell on what I had. I came back to England and received gemcitabine and cisplatin which shrunk and stopped the tumour from growing .They refusedto take my gallbladder out and I beleive that the cancer has started to grow again, I have been researching Immunotherapy abroad before I see my consultant within a few days . I read your last blog that said it is available in the States, all I can find is it in India and China? I tried to look up the Hospital you said you had your treatment at but the web domain has expired.What made you chose this Hospital over all the others? was it recommended? What was the treatment and how long were you in China ( I only ask because I would be going on my own) I really want to make the right decision Smile would you still recommend this Hospital, if so do you have an email address where I can contact them? I am so sorry for all the questions but would love the outcome to be the same as yours.

Ja59
Posts: 15
Joined: May 2013

Hi Dianne,

I also did not find immunotherapy in the USA, but I know about its existence there, because it was invented there and celebrities get this treatment. i know only one hospital in Beijing, which does it http://www.puhuachina.com but I was in a military hospital. Immunotherapy is not part of conventional treatment in China and organised throug biomedical companies, which get contract with hospitals, depending on required treatment. That is why I was in hepatic hospital, but conditions of the ward, were not of our standards, though good. Not many nurses can speak English. This is another reference http://www.cancerbiomaster.com/index.php/news/80-treatment/87-ACTL

this is a direct contact to Stanley Niu niu.stanley@gmail.com he is a coordinator. My e- mail is stebakova.tatiana@gmail.com write to me! My treatment was 3 months.

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