My Onc said I have either GB or Bile Duct primary, but they aren’t sure. Bile duct was not able to be biopsied but GB Adenocarcinoma Stage 4 spread to Peri, LN, Stomach
Can you pls tell me symptoms and experience? Pray you are well
My Onc said I have either GB or Bile Duct primary, but they aren’t sure. Bile duct was not able to be biopsied but GB Adenocarcinoma Stage 4 spread to Peri, LN, Stomach
Can you pls tell me symptoms and experience? Pray you are well
I've had abdominal pain for years, but it wasn't until I had a violent attack, septicimia, a gallstone lodged in my bile duct, that my gallbladder was removed and they found adenocarcinoma stage T2b. I had a liver resection and my margins were clear, but I had 2 cancerous lymph nodes. So. I am on oral chemo and hoping for the best.
Do you have an oncologist yet?
This is a pretty scary 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.
Hello @viopp, hope you are feeling better. Unfortunately, my mom passed away in early March this year after a courageous battle with this cancer and related complications. From when she was first diagnosed to the time of her departure, it was close to 3 years. Clearly, there are many differences between bodies, circumstances around the disease, etc. I hope that your case is one in which you prevail and successfully force this cancer into remission…for good.
A couple of retrospectives I would like to share with you, which you may find beneficial:
- Maintain a healthy lifestyle of regular exercise, drinking lots of water, and getting good sleep.
- Chemo regimens are not permanent. They take their course and then they stop being effective. Make sure you have regular conversations with your oncologist about other regimens, in advance of the current one running its full course. If you are feeling strong, may suggest to get a small dose of the new regimen, when you are ready to start it, to ensure your body can tolerate it reasonably well. Remember, your body is very different at the conclusion of the current regimen than when you first started it.
- Please do not be shy about asking for MRI/CT/other imaging and diagnostics, in addition to CA 19-9, to get a better idea about the effectiveness of chemo. Ask your oncologist about concurrent immunotherapy, in case it is not brought up.
- You or someone in your care team (or at home) should keep a close eye on your blood numbers. Changes to white blood cells, billirubin, and white blood cell components may require some intervention, which, at times, may get prioritized over chemo. Also, take any level of fever extremely seriously! Ensure the physician team give you a clear reason for the fever and accompanying therapy for controlling it.
There is still quite a bit more, which I will send soon. In the meantime, please maintain high spirits (easier said than done), and pay frequent visits to your happy place (wherever that is, with whomever that is, whenever that is). I miss my mom tremendously, and I know she wants me to share what I know with others so they can live with this disease for as long and as painlessly as possible. All the best...
Has anyone been on gem/cis/durvalumab (Imfinzi) and when it stopped working gone to another chemo that worked and if so what was the new chemo treatment?
I was on gem/cis/durvalumab (Imfinzi) and stable, transitioned to durvalumab (Imfinzi) for maintenance. Tumor markers CEA and CA19-9 have been increasing dramatically. PET scan scheduled for August 18th. Expect it will show that the two small tumors are more active or if we have additional reoccurrence.
Trying to get ready for doctor meeting after PET scan.
Has anyone been on gem/cis/durvalumab (Imfinzi) and when it stopped working gone to another chemo that worked and if so what was the new chemo treatment?
I was on gem/cis/durvalumab (Imfinzi) and stable, transitioned to durvalumab (Imfinzi) for maintenance. Tumor markers CEA and CA19-9 have been increasing dramatically. PET scan scheduled for August 18th. Expect it will show that the two small tumors are more active or if we have additional reoccurrence.
Trying to get ready for doctor meeting after PET scan.
@waflanders, it is so hard to hear when a treatment regimen stops working. I'm tagging fellow gallbladder cancer members like @steve90154@pgf@formayor@alie@heartofgold57@viopp to rejoin the discussion and add their suggestions as you prepare for the upcoming PET scan and appointment to discussion next options.
Hi, I had my gallbladder out four and a half years ago. Unfortunately the surgeon was either too stupid or too greedy as he did a keyhole operation The cancer was stage 3 b and he only removed the one lymph node that was full of cancer. Luckily I had clear margins.The surgeon told me that because it had gone to the lymph node it was pointless to do a liver resection as well as more lymph node resection, but he would do a second operation if I wished.I took capecitabine for 6 months I had no side effects. after 18 months I had two lymph nodes starting to get bigger they were not accessible by surgery so I had stereo static radiation 5 high dosage treatments and they stated to shrink . after another 34 months I have now more lymph node getting enlarged and my blood markers are showing evidence of cancer. After a pet scan they only found evidence in 2 lymph nodes. They can't do anymore radiotherapy so my oncologist wants me to start chemo with cisplatin and gemcitabine plus durvalumab. I am hesitant because the statistics show only a difference in survival of a couple of months and I wonder if it is worth it. Has anybody in this group have had treatment with these drugs and how bad the side effects are? Any information will greatly appreciated . Thanks John
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Yes, I was diagnosed in March. It was quite a shock! It is a rare and aggressive cancer. It can be lonely, because there are so few of us.
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1 ReactionVery few of us out there. Gallbladder cancer isn't as popular a topic as other cancers
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1 ReactionStill here. All is good with my wife. Just waiting for next check up
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2 ReactionsMy Onc said I have either GB or Bile Duct primary, but they aren’t sure. Bile duct was not able to be biopsied but GB Adenocarcinoma Stage 4 spread to Peri, LN, Stomach
Can you pls tell me symptoms and experience? Pray you are well
I've had abdominal pain for years, but it wasn't until I had a violent attack, septicimia, a gallstone lodged in my bile duct, that my gallbladder was removed and they found adenocarcinoma stage T2b. I had a liver resection and my margins were clear, but I had 2 cancerous lymph nodes. So. I am on oral chemo and hoping for the best.
Do you have an oncologist yet?
This is a pretty scary cancer!
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1 ReactionIf you're still on this forum, please update on your mom's progress. I am 78 and was diagnosed in March 2023. I'm now on chemo
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1 ReactionHello @viopp, hope you are feeling better. Unfortunately, my mom passed away in early March this year after a courageous battle with this cancer and related complications. From when she was first diagnosed to the time of her departure, it was close to 3 years. Clearly, there are many differences between bodies, circumstances around the disease, etc. I hope that your case is one in which you prevail and successfully force this cancer into remission…for good.
A couple of retrospectives I would like to share with you, which you may find beneficial:
- Maintain a healthy lifestyle of regular exercise, drinking lots of water, and getting good sleep.
- Chemo regimens are not permanent. They take their course and then they stop being effective. Make sure you have regular conversations with your oncologist about other regimens, in advance of the current one running its full course. If you are feeling strong, may suggest to get a small dose of the new regimen, when you are ready to start it, to ensure your body can tolerate it reasonably well. Remember, your body is very different at the conclusion of the current regimen than when you first started it.
- Please do not be shy about asking for MRI/CT/other imaging and diagnostics, in addition to CA 19-9, to get a better idea about the effectiveness of chemo. Ask your oncologist about concurrent immunotherapy, in case it is not brought up.
- You or someone in your care team (or at home) should keep a close eye on your blood numbers. Changes to white blood cells, billirubin, and white blood cell components may require some intervention, which, at times, may get prioritized over chemo. Also, take any level of fever extremely seriously! Ensure the physician team give you a clear reason for the fever and accompanying therapy for controlling it.
There is still quite a bit more, which I will send soon. In the meantime, please maintain high spirits (easier said than done), and pay frequent visits to your happy place (wherever that is, with whomever that is, whenever that is). I miss my mom tremendously, and I know she wants me to share what I know with others so they can live with this disease for as long and as painlessly as possible. All the best...
-
Like -
Helpful -
Hug
5 ReactionsHas anyone been on gem/cis/durvalumab (Imfinzi) and when it stopped working gone to another chemo that worked and if so what was the new chemo treatment?
I was on gem/cis/durvalumab (Imfinzi) and stable, transitioned to durvalumab (Imfinzi) for maintenance. Tumor markers CEA and CA19-9 have been increasing dramatically. PET scan scheduled for August 18th. Expect it will show that the two small tumors are more active or if we have additional reoccurrence.
Trying to get ready for doctor meeting after PET scan.
-
Like -
Helpful -
Hug
1 Reaction@waflanders, it is so hard to hear when a treatment regimen stops working. I'm tagging fellow gallbladder cancer members like @steve90154 @pgf @formayor @alie @heartofgold57 @viopp to rejoin the discussion and add their suggestions as you prepare for the upcoming PET scan and appointment to discussion next options.
How are you doing?
Hi, I had my gallbladder out four and a half years ago. Unfortunately the surgeon was either too stupid or too greedy as he did a keyhole operation The cancer was stage 3 b and he only removed the one lymph node that was full of cancer. Luckily I had clear margins.The surgeon told me that because it had gone to the lymph node it was pointless to do a liver resection as well as more lymph node resection, but he would do a second operation if I wished.I took capecitabine for 6 months I had no side effects. after 18 months I had two lymph nodes starting to get bigger they were not accessible by surgery so I had stereo static radiation 5 high dosage treatments and they stated to shrink . after another 34 months I have now more lymph node getting enlarged and my blood markers are showing evidence of cancer. After a pet scan they only found evidence in 2 lymph nodes. They can't do anymore radiotherapy so my oncologist wants me to start chemo with cisplatin and gemcitabine plus durvalumab. I am hesitant because the statistics show only a difference in survival of a couple of months and I wonder if it is worth it. Has anybody in this group have had treatment with these drugs and how bad the side effects are? Any information will greatly appreciated . Thanks John
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