Pancreatic cancer stage 4: Mom moved to palliative care

Posted by amy @asugent, Jan 1, 2023

For those following my story… my mom’s surgeon said no to removing Mets from ovary and bladder. Because my mom only has one kidney and due to cancer in the peritoneal area, she’s not a candidate. We’re in shock and I have panic attacks just thinking about what’s to come. Chemo didn’t work to shrink the tumor and I think they’re going to try radiation next. I know palliative care isn’t hospice, but what can we expect? My mom lives alone, but has a great support system where she is. I’ve offered to live together and she’s thinking about it. The thought of losing my mom is unbearable, but maybe now that the fight is over there will be some measure of peace. Anyone have info on what to expect from palliative care?

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

I will be going to Memorial Sloan Kettering Cancer Center to see an oncologist who does a lot of work with pancreatic cancer and BRCA. I hope he will be able to bring me up to the "cutting edge" of treatment for BRCA driven pancreatic cancers. I will report on the advice I get. I was unable to tolerate irenotecan so I am getting Folfox. I told my local oncologist that I wanted to stick to a platinum containing regimen since this seems to be particularly beneficial for BRCA.

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@colleenyoung

Welcome, @cmerritt1351. It sounds like you're facing some difficult health challenges. Can you tell me a bit more about what is going on? Have you or a loved one been diagnosed with pancreatic cancer?

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Like, @asugent , my mother is in her own home, but her 24/7 help, her cousin, is soon leaving and we're at a loss to find other options.

I had a long post but I will make a new thread.

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@cmerritt1351

Like, @asugent , my mother is in her own home, but her 24/7 help, her cousin, is soon leaving and we're at a loss to find other options.

I had a long post but I will make a new thread.

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Keeping you in thoughts and prayers

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Plot twist! My mom just got back from her oncology appointment. Her oncologist was OUTRAGED that the peritoneal surgeon told her she was not eligible for surgery because there was "most likely cancer in the peritoneal we cannot see on a CT scan." That surgeon was young and arrogant and started my mom on palliative care. However, her radiologist sang a different tune. He thought he could get this with 5 weeks/each day of radiation to the affected area and "buy her more time." We were happy about that. Then today the oncologist said she should NOT be on palliative care because "we are not there yet." He thinks between more rounds of chemo plus radiation and perhaps some "clean up" surgery, they can give her a handful of years. He also mentioned that in five years he thought immunotherapy could turn this cancer on its head! (Again, just his thoughts on the matter). So, the oncologist wants my mom to see a different surgeon and actually apologized for my mom having gone through what she did. Again, we realize the odds now that this has come back. But we're also remaining cautiously optimistic that she can get a handful of years, if not more. Again, we know things can always take a turn for the worse. We're no strangers to the roller coaster.

Wow, what a whirlwind of emotions. One day they have my mom for dead and the next they give her hope! My head is spinning, and I am not sure I know what to believe anymore with one doctor saying one thing, and 2 other docs saying something completely different. But I will choose hope. I am sure there will be more updates to come, but I wanted to share some positive news for all those who may need it today. Love to all....

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@asugent

Plot twist! My mom just got back from her oncology appointment. Her oncologist was OUTRAGED that the peritoneal surgeon told her she was not eligible for surgery because there was "most likely cancer in the peritoneal we cannot see on a CT scan." That surgeon was young and arrogant and started my mom on palliative care. However, her radiologist sang a different tune. He thought he could get this with 5 weeks/each day of radiation to the affected area and "buy her more time." We were happy about that. Then today the oncologist said she should NOT be on palliative care because "we are not there yet." He thinks between more rounds of chemo plus radiation and perhaps some "clean up" surgery, they can give her a handful of years. He also mentioned that in five years he thought immunotherapy could turn this cancer on its head! (Again, just his thoughts on the matter). So, the oncologist wants my mom to see a different surgeon and actually apologized for my mom having gone through what she did. Again, we realize the odds now that this has come back. But we're also remaining cautiously optimistic that she can get a handful of years, if not more. Again, we know things can always take a turn for the worse. We're no strangers to the roller coaster.

Wow, what a whirlwind of emotions. One day they have my mom for dead and the next they give her hope! My head is spinning, and I am not sure I know what to believe anymore with one doctor saying one thing, and 2 other docs saying something completely different. But I will choose hope. I am sure there will be more updates to come, but I wanted to share some positive news for all those who may need it today. Love to all....

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Have you heard of HIPEC? It’s a chemo wash throughout the abdominal cavity. My sister went through that as her pancreatic cancer spread to the peritoneal. Perhaps you can ask your doctor …

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@huilim

Have you heard of HIPEC? It’s a chemo wash throughout the abdominal cavity. My sister went through that as her pancreatic cancer spread to the peritoneal. Perhaps you can ask your doctor …

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Yes, and my mom did ask her oncologist about it. Not sure where that landed. I think everything is on the table at the moment. I've heard promising things about HIPEC.

How is your sister now?

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My mom is 85 with stage 4 pancreatic cancer . Inoperable due to location of mass and her age. Doctor suggested radiation . Mass got a little smaller . Has not spread . She has a stent in her duct . When asked about any alternatives was told no clinical trials at her age , chemo would be too rough and just palliative care. In excellent health except for this diagnosis which was found by accident . Is tired and treating pain with meds . Anyone else at this age with pancreatic cancer? Treatment or just letting it take its course??? Feel helpless .

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@proparalegal

My mom is 85 with stage 4 pancreatic cancer . Inoperable due to location of mass and her age. Doctor suggested radiation . Mass got a little smaller . Has not spread . She has a stent in her duct . When asked about any alternatives was told no clinical trials at her age , chemo would be too rough and just palliative care. In excellent health except for this diagnosis which was found by accident . Is tired and treating pain with meds . Anyone else at this age with pancreatic cancer? Treatment or just letting it take its course??? Feel helpless .

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Welcome @proparalegal. This is hard news to receive and comprehend. I moved your message about your mom having stage 4 inoperable cancer to this existing discussion:
- Pancreatic cancer stage 4: Mom moved to palliative care https://connect.mayoclinic.org/discussion/mom-moved-to-palliative-care/

I did this so you can read previous helpful posts and connect easily with fellow members like @asugent @mayoconnectuser1 @asingh90 @gardenlady1116 and more.

Sometimes as the caregiver and children, we want to do "everything" possible. As others will share, chemotherapy is tough. My dad stopped chemo because it was not the quality of life he wanted for his final months. Does your mom wish to do chemotherapy? Have you talked with a social worker on the palliative care team?

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She does not want chemo . I know she is looking to my sister and myself to make decisions for her care . I see her declining . I’m just nit sure what to expect . The doctors make it all too clinical .

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@proparalegal

She does not want chemo . I know she is looking to my sister and myself to make decisions for her care . I see her declining . I’m just nit sure what to expect . The doctors make it all too clinical .

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You and your sister know your mom the best and she seems to be asking for you to advocate for her. She probably finds it difficult to deal with the doctors directly, especially if she perceives that they are suggesting care.

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