gallbladder cancer stage 4

Lily50 said:

Hope
Hi,

Sorry to read your post so late but I'm Lily and I am a 6 year survivor of Gallbladder Cancer Stage 4. The statistics are very outdated with regards to this disease. As a doctor yourself you know that having the best doctor in the field that has experience with this disease can really make a difference. You have resources available to you that many don't so find the right doctors to help your mom on this journey. What a great advocate your mom will have since you love her and are a doctor. What a great combination!
You can see other survivors on the thread Gallbladder Cancer - 2011.

My email address is LGregg6293@Aol.Com if you would prefer to talk that way. Just put ACS-CSN in the subject line so it doesn't end up in my spam folder.

Take Care
Lily

Grandma with Stage IV GBC
Dear all,
Hi, I am a 22 y-o grad student, and my dearest 77 y-o grandma was just diagnosed with Stage IV gallbladder cancer. After reading discussion boards, I am a lot more hopeful for my grandma. She is not ready to die and wants to live more healthy years. The cancer has spread to her liver (~4cm tumor), her bile duct and small intestine (~3cm), and she has multiple small ones on her peritoneum (omentum) which are producing ascites. We have been told she is inoperable (even if the chemo works wonderfully) because the fluid carries cancer cells and is all around her abdomen. She has already gotten 2 paracentesis procedures to drain out the fluid so she could feel less bloated and eat. The fluid will keep coming back, however, so long as she has the cancer. Her main symptom right now is the bloating, constipation, her inability to eat much, and some pain.She will be using Gemzar (without Cisplatin because of her age) for the 1st and 8th day, with a week off, so 21 days per cycle.
After reading all the discussion boards, I do not think we have a compassion doctor who is one to fight for his patients. I think he relies on the statistics and doesn't think my grandma will make it that far. After being asked, he said the medium life expectancy is 6 months w/o treatment, and 12-18 w/ treatment and said there is only a 20% change of the chemo working. He said he is aiming for a year for my grandma right now.
Right now, I am just praying the Gemzar works wonders because the doctor sounds like he is going to give up if it doesn't. Do you guys think she should be on Gemzar+Cisplatin for such an aggressive disease? I think the doctor should have at least tried that cocktail first.
I have been urging my parents to get 2nd and 3rd opinions from other institutions, and we are going to consult the Sloan-Kettering Center for Cancer Care in Manhattan and another one in NJ. I have told them that since GBC is so rare, it is imperative to get a specialists' opinion on this.
I would have never in a million years thought someone in my family would get cancer. I was so ignorant to think that cancer was something "other people" got. I have been hanging in there because my grandma has almost been like a mother to me, and I hope everyone else with this disease hangs in there! My email is dey208@lehigh.edu; please feel free to email me. I would love to hear other people experiences, especially with the elderly.
-Denise

puglover89 said:

Grandma with Stage IV GBC
Dear all,
Hi, I am a 22 y-o grad student, and my dearest 77 y-o grandma was just diagnosed with Stage IV gallbladder cancer. After reading discussion boards, I am a lot more hopeful for my grandma. She is not ready to die and wants to live more healthy years. The cancer has spread to her liver (~4cm tumor), her bile duct and small intestine (~3cm), and she has multiple small ones on her peritoneum (omentum) which are producing ascites. We have been told she is inoperable (even if the chemo works wonderfully) because the fluid carries cancer cells and is all around her abdomen. She has already gotten 2 paracentesis procedures to drain out the fluid so she could feel less bloated and eat. The fluid will keep coming back, however, so long as she has the cancer. Her main symptom right now is the bloating, constipation, her inability to eat much, and some pain.She will be using Gemzar (without Cisplatin because of her age) for the 1st and 8th day, with a week off, so 21 days per cycle.
After reading all the discussion boards, I do not think we have a compassion doctor who is one to fight for his patients. I think he relies on the statistics and doesn't think my grandma will make it that far. After being asked, he said the medium life expectancy is 6 months w/o treatment, and 12-18 w/ treatment and said there is only a 20% change of the chemo working. He said he is aiming for a year for my grandma right now.
Right now, I am just praying the Gemzar works wonders because the doctor sounds like he is going to give up if it doesn't. Do you guys think she should be on Gemzar+Cisplatin for such an aggressive disease? I think the doctor should have at least tried that cocktail first.
I have been urging my parents to get 2nd and 3rd opinions from other institutions, and we are going to consult the Sloan-Kettering Center for Cancer Care in Manhattan and another one in NJ. I have told them that since GBC is so rare, it is imperative to get a specialists' opinion on this.
I would have never in a million years thought someone in my family would get cancer. I was so ignorant to think that cancer was something "other people" got. I have been hanging in there because my grandma has almost been like a mother to me, and I hope everyone else with this disease hangs in there! My email is dey208@lehigh.edu; please feel free to email me. I would love to hear other people experiences, especially with the elderly.
-Denise

Gallbladder Cancer
...is a nasty cancer because there isn't much known about it. My surgeon and oncologist also didn't have much hope but because I am/was in good health and am generally a strong positive person, they decided to try everything. I was diagnosed in Oct 2009 and had surgery to remove the gallbladder, its tumour, and part of the liver. I still have cancerous nodules on my liver (only one) and the peritoneum (possibly 6). I was on cisplatin + gemcitibine and had very few side effects but it didn't do much for the tumours. I then had 14 treatments of a much nastier chemo called folfirinox (oxaliplatin + irenotecan + 5FU pump) which did tend to reduce the size of the tumours but I came off it 4 months ago as I ended up in the hospital with a perforated bowel. Sometimes I think quality of life (i.e. off chemo) is more important than quantity. But I would certainly get a 2nd opinion from S-K and MD Anderson (in Texas). They have likely had more gallbladder cancer patients than anyone. I live in Canada where it is even less well known. I would urge your grandmother not to give up. Keep us posted. Oh, I am going to be 69 in a week.
Cheryl

westie66 said:

Sarah's Mom
Hi Sarah: Yes, gemcitibine and cisplatin is the standard treatment but I fear has to be given in powerful portions to do anything at all. Without surgery, well...My oncologist scoured the medical literature and the treatment he put me on is one used for colon cancer and pancreatic cancer. It is called "folfirinox" (which is oxaliplatin + irenotecan + 5FU pump)and this did work to shrink the tumours but it is a nasty combination. Another treatment is called Folfox (oxaliplatin + 5FU) and another is folfiri (irenotecan + 5FU). The oxaliplatin and irenotecan are not well tolerated by many people but your mom is young and hopefully strong. I was on reduced amounts of oxaliplatin. Have her oncologist check out these combinations. I wish her well. There are other people on this discussion board who are still here!
Cheryl

Grandma with Stage IV GBC
Cheryl,
Thank you so much for your response! I wasn't sure if anyone was still following this discussion board.
It seems your initial condition was very similar to my grandma's right now, except that my grandma also has a tumor on what seems to be her lymph nodes. Did you have ascites? How did you tolerate the surgery and how long did it take to recover? My grandmother is 77, so it seems she will not be able to handle a surgery, but I'm still looking into it. The oncologist seemed to rule out surgery because of the ascites.
I'm so scared the Gemzar won't work, and I don't think she could tolerate those other cocktails you mentioned. She's in good health otherwise, but she's not young anymore, you know?
Denise

westie66 said:

Gallbladder Cancer
Hi Denise: No, I have never had ascites with the peritoneum cancer and don't appear to have any affected lymph nodes. The surgery I had in April 2010 to remove the gallbladder, its tumour, and part of my liver was done laparoscopically which is a fairly easy surgery generally but shouldn't be done if gallbladder cancer is known - in my case they didn't know for sure. I was released from hospital the same day but ended up back in emergency the next morning with a broken blood vessel and they had to open me up with a big incision to clear that out. At that time the surgeon observed the nodules on the peritoneum and removed one for pathology and it was malignant (still gallbladder cancer though even though the growths are on the peritoneum; ditto the liver). I didn't have much pain at all but was in ICU for 10 days. I couldn't start chemo until the incision healed and that took 4 months. The major problem with the open type of surgery is that the incision runs up and down over the abdomen and that's where there are a lot of muscles. I ended up with an incisional hernia which was fixed during my two surgeries in May this year. I was up and around within days of the surgery and driving my car within 6 weeks.

I just had a CT scan and it shows no new growths, hardly any change in the peritoneum nodules, but the tumour on the liver has grown a bit. But this is since 2009 so my cancer appears to be slow growing.

The Gemzar has worked on a lot of people, just not on me as the gallbladder tumour was removed before I started on it. Everyone reacts to chemo in different ways. People much much younger than me have reacted badly while people much older than me (I'm 68 - turning 69 on Sunday) have done very well. I guess it will depend on how aggressive her cancer is. I have never had any pain from it.

Keep me posted. You might want to talk to Lily50 on this discussion board.

Cheryl

Gall Bladder Cancer First Post
My Aunt was diagnosed with stage 4 gallbladder cancer Thursday. And like everyone else I have read about the doctors gave us little hope. They are giving her 6 months to 1 year to live and say she is not going to get any better. It has spread to her stomach lining. Has anyone had this diagnosis and gotten better. It is early, she is 59, and wants to fight. We need as much information as we can get before meeting with the oncologist next week. Thanks.
Billie

westie66 said:

Stomach Lining
Hi Billie: Do you think they mean the peritoneum rather than stomach lining? My gallbladder cancer spread to the peritoneum which is the "big bag" that holds all your gastro-intestinal goodies inside. My gallbladder, its tumour, and part of the liver were removed in April 2010. Did they do any surgery on her? I was given 2-3 months in April 2010 and so there is always hope. Are they doing any chemo on her? If not, why not? The typical chemo regime for gallbladder cancer is gemcitibine + cisplatin but didn't work on me. I did something called folfirinox (oxaliplatin + irenotecan + 5FU pump) - you might ask about that. It seemed to work on me as the nodules on the peritoneum have not increased in size or number. Keep us posted please. I am sending you both good vibes!
Cheryl

Stomach Lining
Cheryl,

Sounds like you are doing well. I really don't know if it is the peritoneum, she was just diagnosed Thursday. They went in by laparoscopy. They did not remove the gall bladder. The surgeon did a biopsy while he had her open and said he could not remove it because it was stage 4 and it had already spread into her intestine. My sister was there and she said he said it had spread to the stomach lining. We were looking for some hope and I found this site and and it looked hopeful. More hopeful than the doctors sounded. She said she wanted to fight and I was just hoping for some info to ask the oncologist. Thank you for the response and the good vibes. We will definitely keep you posted.

Thanks so much, Billie

bevs niece said:

Stomach Lining
Cheryl,

Sounds like you are doing well. I really don't know if it is the peritoneum, she was just diagnosed Thursday. They went in by laparoscopy. They did not remove the gall bladder. The surgeon did a biopsy while he had her open and said he could not remove it because it was stage 4 and it had already spread into her intestine. My sister was there and she said he said it had spread to the stomach lining. We were looking for some hope and I found this site and and it looked hopeful. More hopeful than the doctors sounded. She said she wanted to fight and I was just hoping for some info to ask the oncologist. Thank you for the response and the good vibes. We will definitely keep you posted.

Thanks so much, Billie

Stomach Lining
Well, I did get a little more information. It is in the peritoneum. All around it though. She now has a partial blockage in her small bowel. She has not had a bowel movement for about 2 weeks. She has been unable to eat. They inserted an NG tube to provide some relief and that helped. She had her first chemo treatment today, they started with Gemzar. They are going to do it once a week. The surgeon said she is too comprmised to remove the blockage at this time. That would mean not getting started on the chemo for 6 to 8 weeks from now. Now I guess we just wait to see if the chemo does anything. The oncologist says the Cisplatin is too much to start with for now, he will possibly add it later, if she tolerates the Gemzar okay. Does that sound right.. We can only trust the doctors now and keep posting on this website for any info that anyone has to offer.

Thanks,

Billie