I cannot answer your question about other therapies but I am interested in the answer. Like your mom it was discovered that my wife had cancer in her gallbladder after removing because of gall stones. We were sent to a specialist to have a portion of her liver and other lymph nodes around the gallbladder removed. We were hesitant to move forward and CT scans were “unremarkable” so nothing was found. We are still being pressured to move forward with surgery or doing chemotherapy but are leaning toward doing nothing except monitoring (which has not been proposed as an option).
Hi @formayor, first and foremost, I wish you and your wife and family a quick and complete resolution to whatever the issue turns out to be. Yes, we have found CTs to be inconclusive as well. We have found liver MRIs to be more useful in terms of identifying "lesions" that may be in the liver, their size and prominence, and potentially whether they are cancerous or not. Based on my understanding, they can only be determined for cancer if they are large enough to be needle biopsied.
I have initiated the process to have a liver specialist see my mom, per @colleenyoung's advice above (thank you, @colleenyoung!). I will post any findings to this string and hope you find it useful for your wife. In the meanwhile, please let me know if you have further questions about our journey so far, just to compare notes.
This is good to hear. My wife had her gallbladder removed because of stones and they found the cancer. CT scans show nothing else so we are leaning towards not doing anything else.
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.
I cannot answer your question about other therapies but I am interested in the answer. Like your mom it was discovered that my wife had cancer in her gallbladder after removing because of gall stones. We were sent to a specialist to have a portion of her liver and other lymph nodes around the gallbladder removed. We were hesitant to move forward and CT scans were “unremarkable” so nothing was found. We are still being pressured to move forward with surgery or doing chemotherapy but are leaning toward doing nothing except monitoring (which has not been proposed as an option).
Hi @colleenyoung, thank you for following up. My mom has what appears to be an acute infection at the moment. Initial tests point to a possible bile duct blockage coming from the liver. The reason is unknown at the moment. Blood numbers are also confirming potential liver issues. She is really weak right now and we cannot proceed with her chemotherapy regimen until the infection is treated and source of blockage identified and addressed. Her care team thinks a potential cause is cholangitis.
I think what would be beneficial at this point is for us to set up a consultation session with a liver specialist at the Mayo Clinic so that we can have a more accurate picture of what is going on in her liver and potential therapies that we are not thinking about at the moment. In addition, I would like to have a separate discussion with a specialist on the benefits of proton therapy to treat liver lesions. Can you please help me identify a liver specialist and also a radiation oncologist who can provide an unbiased opinion on the benefits of proton therapy relative to SBRT?
Thank you again @colleenyoung and sorry for my long message...
I'm sorry to hear about the infection and possible bile duct blockage. You can request a consult with a liver specialist at Mayo Clinic, by submitting a request online here: http://mayocl.in/1mtmR63
The appointment coordinator will find out more about your mom's medical status and needs and match you with the specialist and team best for her.
Hi @colleenyoung, thank you for following up. My mom has what appears to be an acute infection at the moment. Initial tests point to a possible bile duct blockage coming from the liver. The reason is unknown at the moment. Blood numbers are also confirming potential liver issues. She is really weak right now and we cannot proceed with her chemotherapy regimen until the infection is treated and source of blockage identified and addressed. Her care team thinks a potential cause is cholangitis.
I think what would be beneficial at this point is for us to set up a consultation session with a liver specialist at the Mayo Clinic so that we can have a more accurate picture of what is going on in her liver and potential therapies that we are not thinking about at the moment. In addition, I would like to have a separate discussion with a specialist on the benefits of proton therapy to treat liver lesions. Can you please help me identify a liver specialist and also a radiation oncologist who can provide an unbiased opinion on the benefits of proton therapy relative to SBRT?
Thank you again @colleenyoung and sorry for my long message...
@colleenyoung, we are planning a meeting with my mom's oncologist on Monday, Sept. 12 to discuss stopping the treatment. The severe side effects have taken a significant toll on my mom's psyche, and she is not willing to go through them again (who can blame her?). The effects are subsiding and she is starting to get her appetite back, albeit very slowly. Thank you for the link for appointments. I will schedule one soon...
@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?
Follow up schedule looks good. Mayo of Phoenix looked over my records and concurred.
CA19-9 appears to be leveling off around 50 about 25% higher than we would like, also CEA was up slightly last time, will have to see what the new values are at the end of the month when we test again. Waiting can be so trying.
@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
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?
@colleenyoung, we are planning a meeting with my mom's oncologist on Monday, Sept. 12 to discuss stopping the treatment. The severe side effects have taken a significant toll on my mom's psyche, and she is not willing to go through them again (who can blame her?). The effects are subsiding and she is starting to get her appetite back, albeit very slowly. Thank you for the link for appointments. I will schedule one soon...
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
@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?
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Hi @formayor, first and foremost, I wish you and your wife and family a quick and complete resolution to whatever the issue turns out to be. Yes, we have found CTs to be inconclusive as well. We have found liver MRIs to be more useful in terms of identifying "lesions" that may be in the liver, their size and prominence, and potentially whether they are cancerous or not. Based on my understanding, they can only be determined for cancer if they are large enough to be needle biopsied.
I have initiated the process to have a liver specialist see my mom, per @colleenyoung's advice above (thank you, @colleenyoung!). I will post any findings to this string and hope you find it useful for your wife. In the meanwhile, please let me know if you have further questions about our journey so far, just to compare notes.
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3 ReactionsThis is good to hear. My wife had her gallbladder removed because of stones and they found the cancer. CT scans show nothing else so we are leaning towards not doing anything else.
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2 ReactionsHello Alie,
I cannot answer your question about other therapies but I am interested in the answer. Like your mom it was discovered that my wife had cancer in her gallbladder after removing because of gall stones. We were sent to a specialist to have a portion of her liver and other lymph nodes around the gallbladder removed. We were hesitant to move forward and CT scans were “unremarkable” so nothing was found. We are still being pressured to move forward with surgery or doing chemotherapy but are leaning toward doing nothing except monitoring (which has not been proposed as an option).
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Like -
Helpful -
Hug
1 ReactionI'm sorry to hear about the infection and possible bile duct blockage. You can request a consult with a liver specialist at Mayo Clinic, by submitting a request online here: http://mayocl.in/1mtmR63
The appointment coordinator will find out more about your mom's medical status and needs and match you with the specialist and team best for her.
-
Like -
Helpful -
Hug
2 ReactionsHi @colleenyoung, thank you for following up. My mom has what appears to be an acute infection at the moment. Initial tests point to a possible bile duct blockage coming from the liver. The reason is unknown at the moment. Blood numbers are also confirming potential liver issues. She is really weak right now and we cannot proceed with her chemotherapy regimen until the infection is treated and source of blockage identified and addressed. Her care team thinks a potential cause is cholangitis.
I think what would be beneficial at this point is for us to set up a consultation session with a liver specialist at the Mayo Clinic so that we can have a more accurate picture of what is going on in her liver and potential therapies that we are not thinking about at the moment. In addition, I would like to have a separate discussion with a specialist on the benefits of proton therapy to treat liver lesions. Can you please help me identify a liver specialist and also a radiation oncologist who can provide an unbiased opinion on the benefits of proton therapy relative to SBRT?
Thank you again @colleenyoung and sorry for my long message...
Alie, how are you and your mom doing? Next steps?
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2 ReactionsFollow up schedule looks good. Mayo of Phoenix looked over my records and concurred.
CA19-9 appears to be leveling off around 50 about 25% higher than we would like, also CEA was up slightly last time, will have to see what the new values are at the end of the month when we test again. Waiting can be so trying.
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1 Reaction@alie I was dX about 40 years ago, so the medicos took it out then. Fastest 2-3 ounces I ever lost permanently. oldkarl
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1 Reaction@colleenyoung, we are planning a meeting with my mom's oncologist on Monday, Sept. 12 to discuss stopping the treatment. The severe side effects have taken a significant toll on my mom's psyche, and she is not willing to go through them again (who can blame her?). The effects are subsiding and she is starting to get her appetite back, albeit very slowly. Thank you for the link for appointments. I will schedule one soon...
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Like -
Helpful -
Hug
2 Reactions@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?
-
Like -
Helpful -
Hug
2 Reactions