Gallbladder Cancer - 2015

So sorry to hear of your loss. You are very right about trying to keep this forum going. There is so little information out there regarding GB cancer and I found the posts here to be so helpful when my mum was hit with this news just over a year ago. The other issue I found is that the statistics around this illness are old and very bleak indeed.

Fast forward 3 scans and 12 rounds of chemo later and mum is so far doing really well with no visible sign of the disease. We have a scan coming up in February which everyone is getting nervous about but she is bucking the statistics at the moment and has no signs of reoccurance. Oncologists initially said 1-2 years but recently they have been very quiet on this and are positive about mum's chances of having more time.

Hopefully February will bring good news and we can then rest for another 6 months. I am always keeping my eyes open for new testing/trials as mum (quite understandably) doesn't want to really know about the illness or what options she has. I am realistic about this, she is very high risk for this showing up in the next few years and to be forewarned of the options is to be forearmed if it does happen.

All the best to you and your family. I am sure your mum would be proud that you are turning such a horrible experience into something positive by reaching out to others walking the same path.

A very short, but positive update on mum. We had her scan results this week (3rd scan in total since chemo was complete). No visible sign of cancer and bloodwork all normal

Oncologist has used the term 'free of cancer at the moment'. I know she has a long road ahead but we are celebrating this result, it is beyond anything we'd expected. Mum was told she probably had 12 months at most back in Jan 2014. Oncologist now thinks that the spread did not happen (or was not as bad) and that each clear scan she has increases the odds that it has been cleared due to the GB removal and chemo treatment.

It also means we still have the folfri 5FU treatment as a 2nd line should it come back again.

Hi Everyone

Greetings from India

Just like all on this forum I am also affected by this dreadful disease as my mother was diagnosed with metastatic GBC in sep 2012 . initially we were in denial and doubted the diagnosis as she was not having any trouble of any sort physically. It all started in May 2013 when she suffered from obstructive jaundice and lost hell lot of weight we then ran to the oncologist and it was confirmed that it has been caused by this disease only. We then submitted ourselves to the oncologist and followed whatever he adviced. Her ERCP and metal stenting was done in July 13 and soon she recovered from jaundice. Later in Oct we started off with First line of Chemo Gemcitabine+ Cisplatin ( 1st day then 7th day and 15 days gap after that). She underwend 6 cycles ( 12 seatings) over next 3 months. Results were beyond everyone's expectations as the oncologist had told me earlier that my mother had 3-4 months to live even after chemotherapy. The CT scan after chemo showed that the primary and metastatic lesion shrank as less as to 4cmx4cm from a massive 13cmx12cm and the best part was that she did not suffer from a single side effect whatsoever and had a good appetite and healthy and active routine. But as the fate must have it we again did a CT scan in Oct 14 to check the state and to our surprise the disease had bounced back and the lesion again increased up to their original size of 12x13 cm in 3 months. The symptoms started coming back as she lost weight again, the gastric problems and pain in stomach. We again resorted to the advice of the oncologist and opted for Second line of chemo ( Capcitabine( oral (2500 mg everyday ))+ Oxaliplatin( I V 1st day  and 7th day then a gap of 15 days) . We have undergone 4 seatings and the CT scan has again shown some good signs as the primary and metastatic lesions have again come down to 4cmx5cm but this time she suffered from Diarrhea as the side effect of the drugs which has further weakened her. She is still recovering from the same and preparing herself to undergo the next chemo cycle. She is a warrior at heart with no worries or regrets whatsoever which probably has helped her the most to fight the biggest battle of all ours life.

Now comes the part where I will request you people to provide your advice as the tumor has now come down to a level where probably it can be removed surgically but the oncologist has told us that the metastatic lesions can not be removed surgically hence the disease is inoperable. We are stuck

In a dead end where after 2 cycles I'll have no options left but to watch my mother suffer through the disease . I am also looking for any effective and proven Alternative treatments which I can opt for .

Will appreciate inputs from all

Thanks and regards..

lourdes726 said:

5 year update

Hi all,

I don't post here often, but I do come to this forum often to read updates and comments that are posted. I was diagnosed with gallbladder cancer 5 years ago at age 47 after a routine gallbladder surgery due to gallstones. I had a liver resection at UCLA and follow-up chemo and radiation as a precaution. I have had follow-up scans for 5 years. I had my 5 year scan on Monday and today was told my scan was normal. I wanted to offer some hope to those that are diagnosed with this cancer. When I was diagnosed I searched the internet daily for other survivors. I did meet a few women who offered me support and hope. However, it is very difficult to find people with this cancer or survivors. It is a lonely disease to have and not much is updated on the internet. I found that even the doctors didn't have much experience with this cancer. I feel very lucky to have survived this cancer and I hope that there is more research being done to help those with gallbladder cancer. 

Stay Strong!

Lourdes

Hi Lourdes,

i agree reed with what you say about this being a lonely disease.  I too am 47 and diagnosed after gallbladder removal due to stones. Although my CT scan was clear with no overt tumors or enlarged lymph nodes the extended cholesystectomy resulted in finding some ( most likely) microscopic cancer in my liver and one lymph node( which was still soft and no spread to the node just next to it).  Now undergoing 3 months of chemo with cisplatin and gemcitabibne to be followed by Xeloda plus 6 weeks of radiation and another 3 months of chemo.  Because I'm younger and healthy my doctors say they are treating me aggressively.

so glad to hear you are 5 years clear!!!  I will pray for you if that's okay.  Please keep us posted on your progress.

Colleen

Cllnmoore said:

4 years out

jean-

 

congratulations to you! Thank you for your post.  Yours along with Lourdes' posts give hope to those of us just beginning this journey!  

 

God bless.

 

Colleen

Mum had her 3 monthly scan a few weeks back. We got the results this Tuesday, and everything was clear again! She has now been cancer free for a year. 

Oncologist has now recommended another scan in 7 months after Christmas so we can forget about this horrible episode for the rest of 2015. Never give up hope, there are people surviving beyond the grim statistics for this disease.

My mom has gall bladder cancer. 6 months ago she was clear and advised to get chemo as a preventative measure. After 6 months of Chemo we are told it spread to the lymph nodes! How is this possible?! Do you think the chemo doctor didn't use the right meds? 

I just don't know what to do. Have you ever heard of radio surgery? 

vic_prash said:

My mother diagnosed with Metastatic GBC in Sep 2012

Hi Everyone

 

Greetings from India

 

Just like all on this forum I am also affected by this dreadful disease as my mother was diagnosed with metastatic GBC in sep 2012 . initially we were in denial and doubted the diagnosis as she was not having any trouble of any sort physically. It all started in May 2013 when she suffered from obstructive jaundice and lost hell lot of weight we then ran to the oncologist and it was confirmed that it has been caused by this disease only. We then submitted ourselves to the oncologist and followed whatever he adviced. Her ERCP and metal stenting was done in July 13 and soon she recovered from jaundice. Later in Oct we started off with First line of Chemo Gemcitabine+ Cisplatin ( 1st day then 7th day and 15 days gap after that). She underwend 6 cycles ( 12 seatings) over next 3 months. Results were beyond everyone's expectations as the oncologist had told me earlier that my mother had 3-4 months to live even after chemotherapy. The CT scan after chemo showed that the primary and metastatic lesion shrank as less as to 4cmx4cm from a massive 13cmx12cm and the best part was that she did not suffer from a single side effect whatsoever and had a good appetite and healthy and active routine. But as the fate must have it we again did a CT scan in Oct 14 to check the state and to our surprise the disease had bounced back and the lesion again increased up to their original size of 12x13 cm in 3 months. The symptoms started coming back as she lost weight again, the gastric problems and pain in stomach. We again resorted to the advice of the oncologist and opted for Second line of chemo ( Capcitabine( oral (2500 mg everyday ))+ Oxaliplatin( I V 1st day  and 7th day then a gap of 15 days) . We have undergone 4 seatings and the CT scan has again shown some good signs as the primary and metastatic lesions have again come down to 4cmx5cm but this time she suffered from Diarrhea as the side effect of the drugs which has further weakened her. She is still recovering from the same and preparing herself to undergo the next chemo cycle. She is a warrior at heart with no worries or regrets whatsoever which probably has helped her the most to fight the biggest battle of all ours life.

 

Now comes the part where I will request you people to provide your advice as the tumor has now come down to a level where probably it can be removed surgically but the oncologist has told us that the metastatic lesions can not be removed surgically hence the disease is inoperable. We are stuck

 

In a dead end where after 2 cycles I'll have no options left but to watch my mother suffer through the disease . I am also looking for any effective and proven Alternative treatments which I can opt for .

 

Will appreciate inputs from all

 

Thanks and regards..

Hi, Vic-Prash.  I am wondering if you received any further information on surgery.  My closest friend was diagnosed 12/14 with Stage IV GBC in the liver and peritoneum.  Through chemo, genetic testing (seeking HER2 amplification, which she did have!), and radioembolization, she has no sign of distant metastasis, NED in liver, normal liver function tests and a marker of 34, down from 760.  We are seeking surgery and I'm hoping for some guidance on finding experienced surgeons (we are in NC so east coast is best) as well as any information on peritoneum stripping and HIPEC surgery. 

Appreciate help from anyone else there and all the best to everyone struggling with this disease. 

Kristin

Ja59 said:

Immunotherapy

Dear All,

I was diagnosed with stage 4 in December 2012. I only had gallbladder removed. Refused liver resection and chemotherapy. Spent 3 months in China having Immunotherapy, called ACTL. http://www.asiancancer.com/technology-equipment/2619.html

in 3 months all liver metastasis disappeared. I work full time for 15 months now. Strongly recommend this treatment, as it is easy to tolerate and it has no side effects.Gives god quality of life.

Cheers Tatiana

Tatiana, you have mentioned this procedure is done in the US for GBC but I've been unable to find it.  Can you point me in the right direciton?