1. < Pancreatic Cancer

Mom not responding to chemo

Posted by amy @asugent, Dec 10, 2022

my mom just got her latest scans back and no change in tumor size. background story: my mom was dx with pc 3 years ago. she had folfirnox which almost killed her as she cannot tolerate irinotican. they put her on gemcidabine/abraxine and there was no change to size of tumor, but they operated anyway. her CA 19-9 went up and down for 3 years. in september, a tumor on her left ovary invading the bladder was found to be pc. they put her back on gemzar/abraxine but it's not making a bit of difference. she's had four rounds. i'm devastated and hope this isn't the end of the line for my mom. we see her oncologist on tuesday. has anyone else had a similar situation? can anyone share a positive story? i sure could use some hope. thanks in advance.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

realitytest | @realitytest | Dec 11, 2022

Know nothing about it, but saying a prayer for you and your mom.
Sounds like a terrible experience.

REPLY
asingh90 | @asingh90 | Dec 11, 2022

Hello, my mom had the whipple in July 2020. She was cancer free until December 2021 due to a recurrence in the peritoneum. She had a small procedure to remove the peritoneal nodule. She then had spread to both of her ovaries two months ago in Oct of this year. She was very symptomatic. Our doctors recommended debulking surgery and they were very easily able to remove the ovarian spread. The tumors were huge, but easy to remove once she was in the operating room. It has been two months since then and she is feeling great. She just had her scan, so we’ll see what the internal situation is like when we get the results on Monday, but she is at least feeling back to normal, thankfully. I’d highly suggest you ask your doctors to surgically remove the ovarian tumor. Articles online about Mets to the ovaries also say surgery is very helpful. I can recommend you our surgeon if you like. Good luck!

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 11, 2022

@asugent, be sure to discuss options of palliative care when you meet with your mom's cancer team on Tuesday. Are palliative specialists already part of her care team?

REPLY
1 reply
amy | @asugent | Dec 12, 2022
In reply to @asingh90 "Hello, my mom had the whipple in July 2020. She was cancer free until December 2021..." + (show)
@asingh90

Hello, my mom had the whipple in July 2020. She was cancer free until December 2021 due to a recurrence in the peritoneum. She had a small procedure to remove the peritoneal nodule. She then had spread to both of her ovaries two months ago in Oct of this year. She was very symptomatic. Our doctors recommended debulking surgery and they were very easily able to remove the ovarian spread. The tumors were huge, but easy to remove once she was in the operating room. It has been two months since then and she is feeling great. She just had her scan, so we’ll see what the internal situation is like when we get the results on Monday, but she is at least feeling back to normal, thankfully. I’d highly suggest you ask your doctors to surgically remove the ovarian tumor. Articles online about Mets to the ovaries also say surgery is very helpful. I can recommend you our surgeon if you like. Good luck!

Jump to this post

Thank you for your response. My mom's tumor is invading the bladder so I think the hope is to shrink it, but with the current chemo, it's not doing that. Good news is it hasn't spread further or gotten bigger as far as we can see. I wish they'd go in and remove it, but I think the plan is to do chemo and radiation upfront to try and shrink the tumor away from the bladder.

I have heard it's very rare for pc to show up in this area. So, thank you for your story. I hope you get good news on Monday. Keep me posted!

REPLY
amy | @asugent | Dec 12, 2022
In reply to @colleenyoung "@asugent, be sure to discuss options of palliative care when you meet with your mom's cancer..." + (show)
@colleenyoung

@asugent, be sure to discuss options of palliative care when you meet with your mom's cancer team on Tuesday. Are palliative specialists already part of her care team?

Jump to this post

No palliative care yet. I don't think her oncologist is ready to give up on getting her back to NED once we deal with this current tumor. Hearing that the current chemo regimen isn't working was a huge blow. I'm hoping they change it up, move on to radiation and get this thing out of her! The good news is, she feels fine. No symptoms aside from spotty hematuria.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 12, 2022
In reply to @asugent "No palliative care yet. I don't think her oncologist is ready to give up on getting..." + (show)
@asugent

No palliative care yet. I don't think her oncologist is ready to give up on getting her back to NED once we deal with this current tumor. Hearing that the current chemo regimen isn't working was a huge blow. I'm hoping they change it up, move on to radiation and get this thing out of her! The good news is, she feels fine. No symptoms aside from spotty hematuria.

Jump to this post

@asugent, that is fantastic that her oncologist still has options to achieve no evidence of disease (NED).
I still recommend looking into palliative care. Unlike hospice, palliative care is not end-of-life care, nor does it mean giving up or end of treatment options. Experts in palliative care are fantastic at symptom management and caring for the whole family. You say she has no symptoms, so maybe it isn't right for your mom at this time. But to learn more, you might be interested in this related discussion:

- Palliative Care: What is it? How do I get it? https://connect.mayoclinic.org/discussion/palliative-care-1/

I can imagine hearing that the chemo wasn't working was a blow and you were seeking comfort, not suggestions. I get that now. I join you in focusing on the good news of no pain or other symptoms and that there are options. When do you meet with the team to discuss what next?

REPLY
cathyras | @cathyras | Dec 12, 2022
In reply to @asugent "No palliative care yet. I don't think her oncologist is ready to give up on getting..." + (show)
@asugent

No palliative care yet. I don't think her oncologist is ready to give up on getting her back to NED once we deal with this current tumor. Hearing that the current chemo regimen isn't working was a huge blow. I'm hoping they change it up, move on to radiation and get this thing out of her! The good news is, she feels fine. No symptoms aside from spotty hematuria.

Jump to this post

Palliative care is NOT giving up. You should discuss it with the oncologist.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 12, 2022
In reply to @asugent "No palliative care yet. I don't think her oncologist is ready to give up on getting..." + (show)
@asugent

No palliative care yet. I don't think her oncologist is ready to give up on getting her back to NED once we deal with this current tumor. Hearing that the current chemo regimen isn't working was a huge blow. I'm hoping they change it up, move on to radiation and get this thing out of her! The good news is, she feels fine. No symptoms aside from spotty hematuria.

Jump to this post

@asugent, I'm not sure if you saw this related discussion:
- Chemo not working. What to do next??? Please help!!! https://connect.mayoclinic.org/discussion/what-to-do-next-please-help/

REPLY
Please sign in or register to post a reply.