@johnny2053, I'm tagging @waflanders to make sure they saw your question. I believe @alie@edie78t@lovingwifeterry also had treatment with gemcitabine and cisplatin plus durvalumab and may be able to share their experiences.
Johnny, did you decide to go ahead with treatment? How are you doing?
@johnny2053, I'm tagging @waflanders to make sure they saw your question. I believe @alie@edie78t@lovingwifeterry also had treatment with gemcitabine and cisplatin plus durvalumab and may be able to share their experiences.
Johnny, did you decide to go ahead with treatment? How are you doing?
I have been on this regimen since June 29, 2023. I am on a 3-week cycle, chemo on the first day of the first 2 weeks and off the 3rd week. I only get the Imfinzi once on that cycle. I had a scan after 4 cycles and the size of the tumor was "relatively unchanged". However, the good news is that I have been able to manage the side effects well which includes (for me), nausea feeling, fatigue, loss of appetite and constipation.
You can manage the side effects by reading up and by trial and error to see what works and what does not. If your tumor is growing, you should not wait! Hope this helps.
My oncologist wants me to start on gem/cis/durvalumab because 2 of my lymph nodes are getting bigger.How long were you on the gem/cis and did it work?I am reluctant to do the treatment , do you think it s worth it.Any reply will be appreciated
@johnny2053, I'm tagging @waflanders to make sure they saw your question. I believe @alie@edie78t@lovingwifeterry also had treatment with gemcitabine and cisplatin plus durvalumab and may be able to share their experiences.
Johnny, did you decide to go ahead with treatment? How are you doing?
@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.
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.
My oncologist wants me to start on gem/cis/durvalumab because 2 of my lymph nodes are getting bigger.How long were you on the gem/cis and did it work?I am reluctant to do the treatment , do you think it s worth it.Any reply will be appreciated
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
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.
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.
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...
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Can someone comment if they had inflammation of spleen when diagnosed?
Not yet my cancer is very slow going and my oncologist said to wait , We also send my cancer and blood for molecular screening
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2 ReactionsI have been on this regimen since June 29, 2023. I am on a 3-week cycle, chemo on the first day of the first 2 weeks and off the 3rd week. I only get the Imfinzi once on that cycle. I had a scan after 4 cycles and the size of the tumor was "relatively unchanged". However, the good news is that I have been able to manage the side effects well which includes (for me), nausea feeling, fatigue, loss of appetite and constipation.
You can manage the side effects by reading up and by trial and error to see what works and what does not. If your tumor is growing, you should not wait! Hope this helps.
-
Like -
Helpful -
Hug
2 Reactions@johnny2053, I'm tagging @waflanders to make sure they saw your question. I believe @alie @edie78t @lovingwifeterry also had treatment with gemcitabine and cisplatin plus durvalumab and may be able to share their experiences.
Johnny, did you decide to go ahead with treatment? How are you doing?
No changes to my wife. We have not returned for any more CT scans. All is good for my wife.
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1 ReactionMy oncologist wants me to start on gem/cis/durvalumab because 2 of my lymph nodes are getting bigger.How long were you on the gem/cis and did it work?I am reluctant to do the treatment , do you think it s worth it.Any reply will be appreciated
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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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?
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.
-
Like -
Helpful -
Hug
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
4 Reactions