Anyone diagnosed with Gallbladder cancer?

My mother is 80 years old and was diagnosed with gallbladder cancer over 2 years ago (July 2020). The cancer was discovered following an autopsy on her gallbladder, which was removed due to severe pain. There were no other symptoms like jaundice present at the time. She was told that the cancer was caught relatively early, but, upon further imaging and blood tests, it was discovered that the cancer had spread to several lymph nodes and parts of the liver.
My mom went through another round of surgery to remove part of her liver, which had shown cancer-like lesions. Biopsy results on the removed liver tissue revealed NO sign of cancer! Since then, she has gone through several rounds of chemotherapy and radiation. Specifically, her chemotherapy regimen was as follows:
- Gemcitabine and cisplatin
- Gemcitabine + cisplatin + durvalumab (Topaz study)
- Oxaliplatin + 5-FU
Her body has had various reactions to the therapies above. After nearly six months of therapy with the Topaz study meds, her cancer was still growing, as evidenced by cancer antigen (CA 19-9) blood test and liver MRI. The lesions in the liver have not been positively identified as cancer (too small to biopsy). However, their mere existence, coupled with increase in CA 19-9 numbers have convinced her oncologist team that they are likely cancer. Hence the chemo regimen...
Fast forward to just over a week ago, her oncologist determined that the cisplatin + gems + immune regimen has taken its course, and, in order to further force the cancer to "stability" or "remission", it is best to move to the oxygen + 5FU regimen. After one session of this new cocktail, it became very clear that my mom's body was not responding well to this treatment. She lost her appetite, was extremely weak, was not able to sleep well at night, and lost ~6 lbs in close to a week. My mom currently weighs 52 kilos (~115 lbs), so the weight loss is significant.
I have provided this background to see if anyone has had a similar experience and what (if any) other therapies they may have tried that has worked for them.

My mother is 80 years old and was diagnosed with gallbladder cancer over 2 years ago (July 2020). The cancer was discovered following an autopsy on her gallbladder, which was removed due to severe pain. There were no other symptoms like jaundice present at the time. She was told that the cancer was caught relatively early, but, upon further imaging and blood tests, it was discovered that the cancer had spread to several lymph nodes and parts of the liver.
My mom went through another round of surgery to remove part of her liver, which had shown cancer-like lesions. Biopsy results on the removed liver tissue revealed NO sign of cancer! Since then, she has gone through several rounds of chemotherapy and radiation. Specifically, her chemotherapy regimen was as follows:
- Gemcitabine and cisplatin
- Gemcitabine + cisplatin + durvalumab (Topaz study)
- Oxaliplatin + 5-FU
Her body has had various reactions to the therapies above. After nearly six months of therapy with the Topaz study meds, her cancer was still growing, as evidenced by cancer antigen (CA 19-9) blood test and liver MRI. The lesions in the liver have not been positively identified as cancer (too small to biopsy). However, their mere existence, coupled with increase in CA 19-9 numbers have convinced her oncologist team that they are likely cancer. Hence the chemo regimen...
Fast forward to just over a week ago, her oncologist determined that the cisplatin + gems + immune regimen has taken its course, and, in order to further force the cancer to "stability" or "remission", it is best to move to the oxygen + 5FU regimen. After one session of this new cocktail, it became very clear that my mom's body was not responding well to this treatment. She lost her appetite, was extremely weak, was not able to sleep well at night, and lost ~6 lbs in close to a week. My mom currently weighs 52 kilos (~115 lbs), so the weight loss is significant.
I have provided this background to see if anyone has had a similar experience and what (if any) other therapies they may have tried that has worked for them.

My mother is 80 years old and was diagnosed with gallbladder cancer over 2 years ago (July 2020). The cancer was discovered following an autopsy on her gallbladder, which was removed due to severe pain. There were no other symptoms like jaundice present at the time. She was told that the cancer was caught relatively early, but, upon further imaging and blood tests, it was discovered that the cancer had spread to several lymph nodes and parts of the liver.
My mom went through another round of surgery to remove part of her liver, which had shown cancer-like lesions. Biopsy results on the removed liver tissue revealed NO sign of cancer! Since then, she has gone through several rounds of chemotherapy and radiation. Specifically, her chemotherapy regimen was as follows:
- Gemcitabine and cisplatin
- Gemcitabine + cisplatin + durvalumab (Topaz study)
- Oxaliplatin + 5-FU
Her body has had various reactions to the therapies above. After nearly six months of therapy with the Topaz study meds, her cancer was still growing, as evidenced by cancer antigen (CA 19-9) blood test and liver MRI. The lesions in the liver have not been positively identified as cancer (too small to biopsy). However, their mere existence, coupled with increase in CA 19-9 numbers have convinced her oncologist team that they are likely cancer. Hence the chemo regimen...
Fast forward to just over a week ago, her oncologist determined that the cisplatin + gems + immune regimen has taken its course, and, in order to further force the cancer to "stability" or "remission", it is best to move to the oxygen + 5FU regimen. After one session of this new cocktail, it became very clear that my mom's body was not responding well to this treatment. She lost her appetite, was extremely weak, was not able to sleep well at night, and lost ~6 lbs in close to a week. My mom currently weighs 52 kilos (~115 lbs), so the weight loss is significant.
I have provided this background to see if anyone has had a similar experience and what (if any) other therapies they may have tried that has worked for them.

My mother is 80 years old and was diagnosed with gallbladder cancer over 2 years ago (July 2020). The cancer was discovered following an autopsy on her gallbladder, which was removed due to severe pain. There were no other symptoms like jaundice present at the time. She was told that the cancer was caught relatively early, but, upon further imaging and blood tests, it was discovered that the cancer had spread to several lymph nodes and parts of the liver.
My mom went through another round of surgery to remove part of her liver, which had shown cancer-like lesions. Biopsy results on the removed liver tissue revealed NO sign of cancer! Since then, she has gone through several rounds of chemotherapy and radiation. Specifically, her chemotherapy regimen was as follows:
- Gemcitabine and cisplatin
- Gemcitabine + cisplatin + durvalumab (Topaz study)
- Oxaliplatin + 5-FU
Her body has had various reactions to the therapies above. After nearly six months of therapy with the Topaz study meds, her cancer was still growing, as evidenced by cancer antigen (CA 19-9) blood test and liver MRI. The lesions in the liver have not been positively identified as cancer (too small to biopsy). However, their mere existence, coupled with increase in CA 19-9 numbers have convinced her oncologist team that they are likely cancer. Hence the chemo regimen...
Fast forward to just over a week ago, her oncologist determined that the cisplatin + gems + immune regimen has taken its course, and, in order to further force the cancer to "stability" or "remission", it is best to move to the oxygen + 5FU regimen. After one session of this new cocktail, it became very clear that my mom's body was not responding well to this treatment. She lost her appetite, was extremely weak, was not able to sleep well at night, and lost ~6 lbs in close to a week. My mom currently weighs 52 kilos (~115 lbs), so the weight loss is significant.
I have provided this background to see if anyone has had a similar experience and what (if any) other therapies they may have tried that has worked for them.

Question any information using CA 19-9 to determine reoccurrence before tumor is large enough to be identified by CT scan.
With pancreatic cancer if their was elevated CA 19-9 prior to surgery then around 60% of the time an increasing CA 19-9 trend was identified before the tumor could be detected with CT scan.
History:
Gallbladder cancer found when it was removed 1.6 cm.
PET scan 20 days later showed tumor in liver section IVb.
Liver resection segment 4B, tumor 3.5 cm, margins clear.
Followed with 26 external beam radiation and 5FU chemo.
CA 19-9 continues to show downward trend and is approaching normal levels.
5 months after liver resection CT scan could not detect any tumor.
Current plan is to test CA 19-9 every 40 days and CT scan every 6 months. Frequency to be increased if CA 19-9 test establishes an increasing trend

@alie, welcome to Mayo Clinic Connect, an online community of patients and family caregivers, like you. I noticed that you prefaced one of your posts with "to the clinicians." If you would like to seek a second opinion with Mayo experts, you can submit a request for an appointment here: http://mayocl.in/1mtmR63

But back to getting you connected with others like you. You'll notice that I moved your posts to this existing discussion:
- Anyone diagnosed with Gallbladder cancer? https://connect.mayoclinic.org/discussion/gallbladder-cancer/

I did this so you can connect with members like @pgf @dougmcd @waflanders and @digibson.

Alie, I'm really sorry to hear that the latest treatment is not working for your mom. Have they stopped treatment? Are her side effects subsiding and her appetite returning?

What were her CA19-9 numbers?

@waflanders, typically CA 19-9 is not used alone. Further investigation with imaging studies, like CT scans are needed to confirm the diagnosis or recurrence.

From American Cancer Society https://www.cancer.org/cancer/gallbladder-cancer/detection-diagnosis-staging/diagnosis.html
"People with gallbladder cancer may have high blood levels of the markers called CEA and CA 19-9. Usually the blood levels of these markers are high only when the cancer is in an advanced stage. These markers are not specific for gallbladder cancer – that is, other cancers or even some other health conditions also can make them go up.
These tests can sometimes be useful after a person is diagnosed with gallbladder cancer. If the levels of these markers are found to be high, they can be followed over time to help tell how well treatment is working."

Monitoring CA 19-9 is a less invasive test and can be the proverbial canary in the coal mine. How are you feeling about the current follow-up plan?