Mom moved to palliative care

Posted by amy @asugent, Jan 1 10:52am

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?

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amy,

I am sorry anyone is going through this. I note my sister's story in another thread.

So, apparently, the degradation can be gradual. My sister lived alone, and even after determination of inoperability at Mayo, returned home to restart chemo – weaker and weaker, then reaction to second restart cycle, then falling, unable to walk, then hospital, then care facility … comfortable, but now waiting for next step in what seems to be decline. If she recovers sufficiently, she may try and buy more time with chemo. She could decide to forego further chemo, or the oncologist could refuse based on her condition. She has significant ascites, as well. If she continues to decline, she would need hospice care. We don't really know.

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Hello, I’m so sorry you are going through this. As you know, my Mom also had ovarian mets and then had palliative cytoreductive/debulking surgery to remove them recently. First off, I want to say that palliative care doesn’t mean everything is ending- all that it means is that the treatments going to be given now are non-curative, meaning they are provided for prolonging life and reducing symptoms. There are pancreatic cancer patients out there that have been on palliative care for numerous years living good lives! In fact, my mom’s surgeon told us before her surgery that this would be a palliative surgery, meaning non-curative. We were totally fine with that because it greatly reduced her symptom burden and removed the mets. As of her scan a few weeks ago, she is doing overall well and returning to her normal life, thank God, but there is a little cancer still left in her, which explains the notion of “palliative” v. “curative.” In the meantime, we are keeping a close watch on her to remove any new growths and also waiting for a clinical trial to open up that potentially could be very effective treatment for her. Just because they are using the word “palliative” now, doesn’t mean the end at all. Please do not equate the two as the same. Normally, once the cancer comes back in a different part of the body, any treatment is considered palliative because the cancer cannot be cured anymore- but it can be contained for a long time potentially.

I would suggest the following: 1) Do a full genomic and fusion panel to identify any gene mutations or fusions that can be acted upon through new medicines; 2) Find a different surgeon that is open to doing a cytoreductive/HIPEC/debulking surgery to remove the ovarian mets and the peritoneum/omentum (my Mom’s cancer also had spread to her peritoneum, and they removed the omentum during the same surgery for the ovarian mets). The reason why the surgeon is probably saying no in your case is because the cancer is on a non-peritoneal organ (ovaries). According to textbook practice, this disqualifies a pancreatic cancer patient from that type of surgery. However, there are surgeons out there that are willing to think of the box and try different things. The only thing to watch out for is if your Mom only has one kidney and has other health issues or is of old age, the surgeons may shy away from the surgery because the surgery will be pretty intense and recovery time will be a few months overall. You have to remind the surgeon that your pancreatic cancer is not the regular aggressive type, as it re-appeared three years later, which is a long time. As a result, doing the surgery could potentially do a lot to keep the cancer at bay for some time. Get second, third, fourth surgical opinions if necessary. Emphasize the three year NED time you had; 3) Try different chemo regimes that are not the regular types (it could be that her tumors respond well to a different regime); 4) Look for clinical trials, especially those that target the tumor’s specific genetic mutations. Clinical trials can take time to join, as there is a lot of paperwork involved and testing etc., so please begin research on this right away. All in all, please do not lose hope. Palliative care is not a bad thing at all and can potentially keep the cancer at bay for a long time. Do not give up hope! Please let me know if there is anything I can do to help- I can help research trials, suggest hospitals etc.

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@asingh90

Hello, I’m so sorry you are going through this. As you know, my Mom also had ovarian mets and then had palliative cytoreductive/debulking surgery to remove them recently. First off, I want to say that palliative care doesn’t mean everything is ending- all that it means is that the treatments going to be given now are non-curative, meaning they are provided for prolonging life and reducing symptoms. There are pancreatic cancer patients out there that have been on palliative care for numerous years living good lives! In fact, my mom’s surgeon told us before her surgery that this would be a palliative surgery, meaning non-curative. We were totally fine with that because it greatly reduced her symptom burden and removed the mets. As of her scan a few weeks ago, she is doing overall well and returning to her normal life, thank God, but there is a little cancer still left in her, which explains the notion of “palliative” v. “curative.” In the meantime, we are keeping a close watch on her to remove any new growths and also waiting for a clinical trial to open up that potentially could be very effective treatment for her. Just because they are using the word “palliative” now, doesn’t mean the end at all. Please do not equate the two as the same. Normally, once the cancer comes back in a different part of the body, any treatment is considered palliative because the cancer cannot be cured anymore- but it can be contained for a long time potentially.

I would suggest the following: 1) Do a full genomic and fusion panel to identify any gene mutations or fusions that can be acted upon through new medicines; 2) Find a different surgeon that is open to doing a cytoreductive/HIPEC/debulking surgery to remove the ovarian mets and the peritoneum/omentum (my Mom’s cancer also had spread to her peritoneum, and they removed the omentum during the same surgery for the ovarian mets). The reason why the surgeon is probably saying no in your case is because the cancer is on a non-peritoneal organ (ovaries). According to textbook practice, this disqualifies a pancreatic cancer patient from that type of surgery. However, there are surgeons out there that are willing to think of the box and try different things. The only thing to watch out for is if your Mom only has one kidney and has other health issues or is of old age, the surgeons may shy away from the surgery because the surgery will be pretty intense and recovery time will be a few months overall. You have to remind the surgeon that your pancreatic cancer is not the regular aggressive type, as it re-appeared three years later, which is a long time. As a result, doing the surgery could potentially do a lot to keep the cancer at bay for some time. Get second, third, fourth surgical opinions if necessary. Emphasize the three year NED time you had; 3) Try different chemo regimes that are not the regular types (it could be that her tumors respond well to a different regime); 4) Look for clinical trials, especially those that target the tumor’s specific genetic mutations. Clinical trials can take time to join, as there is a lot of paperwork involved and testing etc., so please begin research on this right away. All in all, please do not lose hope. Palliative care is not a bad thing at all and can potentially keep the cancer at bay for a long time. Do not give up hope! Please let me know if there is anything I can do to help- I can help research trials, suggest hospitals etc.

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Thank you so much for your thoughtful response. It helped a lot. Yes, I was thinking the end was near. I have been beside myself with anticipatory grief, just waiting for the shoe to drop. My mom did have gene sequencing done and has no mutations. Apparently, the one drug that can help her (irinotecan) is the one drug she cannot have (she has something called Gilbert's Syndrome which cannot break down the irinotecan -she almost died of toxicity the first time around). She has been on Gemzar and something else (the name is escaping me) with no results in shrinking the tumor, but it hasn't grown or spread either. The surgeon was pretty blase and basically said that there are cancer cells in my mom that we can't see from a PET or CT. How does she know? Experience, I guess. I don't know why they won't remove the mets to the ovary, but I do understand not wanting to do the bladder resection based on the extensiveness of the surgery, given that they cannot guarantee this would give her a cure, and her only having one kidney. I think they might try radiation next, and I am really hoping they have success with this. My mom's attitude has been stellar. She said she's at peace with whatever happens. I, however, am a mess. I can't eat, work is really hard and so is sleep. I wake up in total panic over losing my mom. I hope someday I can find the peace my mom has. In the meantime, I will take the info you have shared to her and hopefully this will motivate her to get a second opinion. Again, thank you so much for reaching out. I was feeling pretty desperate, and your response did help me greatly.

REPLY
@mayoconnectuser1

amy,

I am sorry anyone is going through this. I note my sister's story in another thread.

So, apparently, the degradation can be gradual. My sister lived alone, and even after determination of inoperability at Mayo, returned home to restart chemo – weaker and weaker, then reaction to second restart cycle, then falling, unable to walk, then hospital, then care facility … comfortable, but now waiting for next step in what seems to be decline. If she recovers sufficiently, she may try and buy more time with chemo. She could decide to forego further chemo, or the oncologist could refuse based on her condition. She has significant ascites, as well. If she continues to decline, she would need hospice care. We don't really know.

Jump to this post

I am sorry you are going through this too. It's just the worst and I hate that any of us are on this site having to talk about such awful and scary things. Your sister sounds like a true warrior, fighting until the end! I hope she finds peace soon and is out of pain. I hope the same for your and your family as well.

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@asugent

Thank you so much for your thoughtful response. It helped a lot. Yes, I was thinking the end was near. I have been beside myself with anticipatory grief, just waiting for the shoe to drop. My mom did have gene sequencing done and has no mutations. Apparently, the one drug that can help her (irinotecan) is the one drug she cannot have (she has something called Gilbert's Syndrome which cannot break down the irinotecan -she almost died of toxicity the first time around). She has been on Gemzar and something else (the name is escaping me) with no results in shrinking the tumor, but it hasn't grown or spread either. The surgeon was pretty blase and basically said that there are cancer cells in my mom that we can't see from a PET or CT. How does she know? Experience, I guess. I don't know why they won't remove the mets to the ovary, but I do understand not wanting to do the bladder resection based on the extensiveness of the surgery, given that they cannot guarantee this would give her a cure, and her only having one kidney. I think they might try radiation next, and I am really hoping they have success with this. My mom's attitude has been stellar. She said she's at peace with whatever happens. I, however, am a mess. I can't eat, work is really hard and so is sleep. I wake up in total panic over losing my mom. I hope someday I can find the peace my mom has. In the meantime, I will take the info you have shared to her and hopefully this will motivate her to get a second opinion. Again, thank you so much for reaching out. I was feeling pretty desperate, and your response did help me greatly.

Jump to this post

Keeping you and your Mom in my prayers. I am a Mom and have BRCA. My daughter has it also. She has come from the South Pacific to help me. I am grateful. The first round of chemo with Folfirinox sent me to the hospital. I am now just getting 5-FU and oxyplatinum. I don't feel optimistic about the future, but I am grateful that my daughter is here with me. I know she is distressed, these cancers could be in her future and she has two young children. The spiritual uplift that her presence is bringing to me is keeping me going.

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@asugent

Thank you so much for your thoughtful response. It helped a lot. Yes, I was thinking the end was near. I have been beside myself with anticipatory grief, just waiting for the shoe to drop. My mom did have gene sequencing done and has no mutations. Apparently, the one drug that can help her (irinotecan) is the one drug she cannot have (she has something called Gilbert's Syndrome which cannot break down the irinotecan -she almost died of toxicity the first time around). She has been on Gemzar and something else (the name is escaping me) with no results in shrinking the tumor, but it hasn't grown or spread either. The surgeon was pretty blase and basically said that there are cancer cells in my mom that we can't see from a PET or CT. How does she know? Experience, I guess. I don't know why they won't remove the mets to the ovary, but I do understand not wanting to do the bladder resection based on the extensiveness of the surgery, given that they cannot guarantee this would give her a cure, and her only having one kidney. I think they might try radiation next, and I am really hoping they have success with this. My mom's attitude has been stellar. She said she's at peace with whatever happens. I, however, am a mess. I can't eat, work is really hard and so is sleep. I wake up in total panic over losing my mom. I hope someday I can find the peace my mom has. In the meantime, I will take the info you have shared to her and hopefully this will motivate her to get a second opinion. Again, thank you so much for reaching out. I was feeling pretty desperate, and your response did help me greatly.

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Thank you for sharing your situation.
I relate to your perspective, waking in a panic, fear and struggling to deal with everyday life.

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@cmerritt1351

Thank you for sharing your situation.
I relate to your perspective, waking in a panic, fear and struggling to deal with everyday life.

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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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@gardenlady1116

Keeping you and your Mom in my prayers. I am a Mom and have BRCA. My daughter has it also. She has come from the South Pacific to help me. I am grateful. The first round of chemo with Folfirinox sent me to the hospital. I am now just getting 5-FU and oxyplatinum. I don't feel optimistic about the future, but I am grateful that my daughter is here with me. I know she is distressed, these cancers could be in her future and she has two young children. The spiritual uplift that her presence is bringing to me is keeping me going.

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Hello, while I am not a doctor, I think BRCA has precision medicines that can target the tumor pretty well. You mentioned that you are on Folfirinox. Did you talk to you doctors about any targeted therapies to target your BRCA mutation instead of the standard chemo? There is a medicine called Olaparib that has shown some success with pancreatic cancer driven by the BRCA mutation I believe.

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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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