Gallbladder Cancer - 2013 (Any Stage)

LucyDoodle said:

An update on my husband

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 

 

 

 

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

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 said:

birder guy

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!!!!

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

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

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 said:

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

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

LucyDoodle said:

An update on my husband

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 

 

 

 

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

preethiafc said:

gallbladder fossa with a necrotic center

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

 

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

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