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Gallbladder Cancer Adenocarcinoma Stage 4

Lin2Kimi
Posts: 4
Joined: Mar 2010

I am 56 years old white female. This is my first post. I was recently diagnosed with Stage 4 Gall Bladder cancer: Poorly Differentiated Adenocarcinoma, Favor Adenocarcinoma of the Pancreaticobiliary Primary Site of Orgin. My husband and I are still in shock and trying to process it. We went to Stanford Hospital in Palo Alto, CA to one of the best surgeons who is very aggressive surgically with Cancer. They told me my gall bladder cancer had spread to other lymph nodes, liver, upper gastrointestinal track and was inoperable. I started an aggressive Chemotherapy last week of Gemcitabine and Cysplatin injections. I have been told I have 10 months at best. It is all so hard to comprehend. My husband and therapy dog never leave my side. They are managing the pain with drugs but my fear is that my family and friends will see me suffer.

Unfortunately, so far I have read that chemotherapy has not been found to work very well
against gallbladder cancer. Newer drugs are being developed that work in different ways from standard chemotherapy drugs. These drugs target specific parts of cancer cells or their surrounding environments. One target of several newer drugs is tumor blood vessels. Gallbladder tumors need new blood vessels to grow beyond a certain size. The drug
sorafenib (Nexavar), which is already used for some liver cancers, works in part by hindering new blood vessel growth (angiogenesis). It is now being studied for use against gallbladder cancer. Bevacizumab (Avastin), another drug that targets blood vessel growth, is also being studied against gallbladder cancer. Has anyone tried these new drugs and how effective are they? Are there any trials?

I found this quote that may bring some of you some peace as it has for me: “When you have come to the edge Of all light that you know And are about to drop off into the darkness Of the unknown, Faith is knowing One of two things will happen: There will be something solid to stand on or You will be taught to fly”

May God Bless us all...

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

Hello,

I am a survivor of Stage 4 Gallbladder Cancer. I was diagnosed in 2005 and here it is 2010. I completed my treatment plan in 2007. I too was on Gemzar and Cysplatin (very aggressive and highly toxic). I had a liver surgeon at UCLA do my surgery after 11 months of chemotherpy in Nevada and then additional chemotherpy for 3 months. Sometimes the doctors will give you the worst case sceanario (I too was given a short time frame) and they were wrong! Have Faith and Hope it will carry you thru. Make sure you get second opinions and don't take no for an answer. The answer no becomes not yet. This is a very tough disease with alot of unknowns.

Have you checked out the posts under Gallbladder Cancer Stage4? They are currently alot of people that are experiencing the same thing that you are. There are two of us (survivors) that post on that board.

We will try and help you as much as we can.
Take Care
Lily

Lin2Kimi
Posts: 4
Joined: Mar 2010

Lily,

I have thoroughly checked out the posts of gallbladder cancer, thank you. I too had a very stressful job working at Cisco Systems, Inc the last 14 years. I also experienced chest pains and abdominal pain prior to my diagnosis. I was very active physically, and otherwise in perfect health. Your story is an inspiration to me and my husband and I would like to stay in touch with you. Who was your surgeon at UCLA and who is your oncologist? just curious. I went to a renown surgeon 'Dr Visser' at Stanford who would not operate. It sounds like I have a long regime of chemo just as you did with the hope of shrinking the tumors and then possible surgery. I like my oncologist so far but I was wondering if you had ever thought having a chemo test to see which forms of chemo are most affective on this type of cancer. It would involve me having another biopsy. If the gem and cys worked for you maybe that is the correct course of treatment, however statistics claim that chemo is not proven affective for gallbadder cancer which is of great concern to us. With all that being said, I guess my mind is going a million miles an hour and my husband and I both feel a sense of helplessness yet our faith and spiritualism remains strong.

Thank you for your reply. It has brought me a sense of comfort knowing I am not alone. This is a horrible cancer and certainly deserves more attention. Bless you - Kimi

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

Hi Kimi,

I was glad to see that you posted on the other board, there are many people who are going thru the same thing that you and your husband are. It is nice not to feel so isolated. I wish that this board existed when I was first diagnosed as it would have given me additional support.

I do believe that stress is a contributing factor to this disease. Your symptoms and treatment plan sound very close to what I experienced.

My surgeon at UCLA was:

Howard Reber
PFleger Liver Institute
The Dumont - UCLA Transplant Center
200 UCLA Medical Plaza Suite 214
Los Angles, Ca 90095-7302
310-794-7788
The procedure that I had done was a radical cholecystectomy with excision of extrahepatic biliary duct and radical hepatoduodenal node dissection.
I was told that he pioneered this procedure and was the best.

My oncologist is:
Russell P Gollard
Cancer & Blood Specialist of Nevada
58 N Pecos Road
Henderson, Nevada 89074
702-822-2000 (Green Valley Location)
He was a graduate of UCLA and has many contacts there.

I never had the chemo test that you are referring to. No one told me that it was available. If it had been suggested to me to go that route I would have. Even though a biopsy isn't the most pleasant, I would have jumped at the chance to do it. I feel that the statistics are outdated and I feel that this cancer is becoming more and more prevelant. They really don't know how to effectively treat it at this point. There are a few success stories out there but not many.

Stay strong and keep your faith, it is what will keep you going.
Take Care, you are never alone.
Lily

alexinla
Posts: 2
Joined: Apr 2011

Hi Lily, my mother also has stage 4 GB Cancer.... a small world - her surgeon was Dr. Reber at UCLA - the best!

The short version of our story:
- Diagnosed Jan 2010
- Cholecystectomy Jan 2010
- Whipple May 2010 (after some more malignancy was discovered in the bile duct inside her pancreas)
- Recurrence to 1 lymph node last month March 2011

She starts Gemzar/Cisplatin next week. Her postsurgery pathology was great (clean margins, clean lymph nodes), so we were devastated when the recurrence happened.

Your story brought me a lot of joy - knowing you are a 5 year survivor! Thanks for sharing, we're now more confident than ever.

Alex

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

Hi again Alex!

I'm trying to play catch up on my postings.

I totally agree that Dr. Howard Reber is the best. In my heart if it wasn't for my great oncologist Dr. Russell Gollard (the science) and (the art) of the surgeons on Dr.Reber's team I wouldn't be here.

I'm glad that you found me and that it has given you hope in an otherwise difficult situation.

Let me know how it is going.
Take Care
Lily

sam3108
Posts: 2
Joined: Apr 2012

Hello Lily,

Congrats to you for being brave,showing faith in life and winning over the darkness.
My uncle(60yrs) is suffering from GB stage 4 cancer and it has been spread over liver,right lung and even on the root of a tooth(molars). he has been diagnosed for this just 20days ago. so if u could suggest me something or able to provide me the email id of ur doc then it will be of great help. i am living in India and here the doctors said that surgery is not possible and chemotherapy is the only option available. My uncle now started to give up after hearing this. so can u please provide him a ray of hope? I am eagerly waiting for ur reply.

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

Lily50 may be away but I think she gave that information in an email just above yours? Hate to see you wait.
Cheryl

sam3108
Posts: 2
Joined: Apr 2012

thnx Cheryl for ur reply.
but in above mails she doesn't mention the email-id of any doc. if u have one then please provide it to me.

sam

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

Hi: I'm from Canada and so can't help I'm afraid. It is rare in Canada for doctors to give email addresses - they'd be inundated. Sorry!
Cheryl

ravichandradurvasula's picture
ravichandradurvasula
Posts: 2
Joined: Aug 2013

hello lily.this is ravi iam a btech final year student from india.. recently my mother is attacked with a gallblader cancer..the local doctors said that the cancer stage has been crossed(metatsatic) and there is no more treatment we can do..they said that there are stones in the gallblader of my mother's so that the bile juice has been directly mixed into the blood so that all the remaining parts have been damaged..including lungs. she has now jaundie,and her stomach bulged, will you help me..i just want to know wether there is treatment or not..wether my mother can bear the treatment as she is so weak

preethiafc
Posts: 6
Joined: May 2013

Hi Ravi,

My mom was also in similar situation three months before. The doctors advised to place a metallic stent to relieve her jaundice and then we have started with the chemotherapy. Please dont' delay and look out for a good gastroentrologist and start the treatment asap.

 

Thanks

Pree

 

ravichandradurvasula's picture
ravichandradurvasula
Posts: 2
Joined: Aug 2013

thank you preethiafc,but im afrads to sayunfortunately my mother died 2days ago..as it was so avanced its not been possible to cure.

KellyG01
Posts: 1
Joined: Sep 2013

Hi there

 

I have been reading all the posts going back many years. Thank you for being so generous with your time and information.

My father has been battleling gallbladder cancer since March 2012 found during surgery for a gall stone. In July of this year it is recurrent incurable stage 4 in adominal wall and in surgical area wich was removal of gallblader and section of the liver and lymphnodes.They started a third or fourth round of chemo called FOLFOX administered through a port for 46 hours. His first does was on Tuesday last week and he is so weak at the moment he can barely walk to the bathroom. Throat is sore making it hard to swallow and eat. Breathlessness when standing, not eating. My mother is a reck worried about him not eating. They have been married 52 years. This is so hard to see. He is now 185 lbs and this round of chemo isn't going to help his weight.

They told him he will be on this chemo for the rest of his life. I just don't know how long he can live this way. Is there a possibility that chemo side effects will subside over the next couple of weeks. He is on a every other once a week schedule. I don't think he will continue if this is the way he will live.

They told him not to ear hot or cold food. only room temp. 

Thank you for your help.

Kelly

 

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