What chemo did you have with stage 4 pancreatic cancer?

Posted by rtw007 @rtw007, May 19, 2021

Those of you with stage 4 pancreatic cancer, which chemo regimen have you taken? How bad are the side effects? Are you sick until the next round of chemo? How much time is the chemo expected to give you?

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Hi @rtw007, I can see you have questions about starting chemo for stage 4 pancreatic cancer. Let me bring in fellow members like @marvinjsturing @nogginquest @ginpene05 @beachgirl23 @pamelaanne @julie2018 @sadiegrace @wrolsen @dotmoto @bm69 and @cjgamble to share their experiences with chemo.

Rtw007, when do you start chemo and what regimen? What treatments have you had?

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I started with 5-FU in late Nov./20 every two weeks. I had some nausea at first, but was prescribed some pills to help with it. Now, when I am three or four days past chemo infusion days I'm feeling great – wouldn't know there is a problem! Good luck to you. Stay positive and keep your friends and family in the loop. They can be the best medicine ever.

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Sloan kettering gave my wife gemcitabine; it didn't work;she died.

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@italice

Sloan kettering gave my wife gemcitabine; it didn't work;she died.

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Hello @italice and welcome to Mayo Clinic Connect. I am so sorry to hear of your wife's passing. Losing a loved one is excruciating. When did your wife lose her battle with cancer?

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@rtw007 my wife was diagnosed at stage 3 in 2019 and immediately started folfirinox (including 5fu and oxalyplaten).9 rounds every other week before radiation and surgery. 1 year post surgery she became stage 4 with a tumor on the ovary leading to more surgery and now more chemo. She is now on GAC gemcitibine, abraxane and cisplaten. Prescribed 6 x 21 day cycles, 2 weeks on, 1 week off. The side effects have been brutal. Plummeting white count necessitated treatment with nulasta. Nausea treated with Ativan, compazine and zofran. Non-stop diarrhea treated with questron, Imodium and lomatil. Tincture opium has been added to combat the diarrhea as the others have no benefit. Fatigue is brutal. She's bedridden for 4 days after day 1 treatment of cycle and 7 days in bed after the day 8 treatment. If her numbers and scans are good after cycle 3, they're going to eliminate the cisplaten to try to lighten the side effects. Hopefully you weather the treatment far better than my poor wife. Good luck.

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@beachdog

@rtw007 my wife was diagnosed at stage 3 in 2019 and immediately started folfirinox (including 5fu and oxalyplaten).9 rounds every other week before radiation and surgery. 1 year post surgery she became stage 4 with a tumor on the ovary leading to more surgery and now more chemo. She is now on GAC gemcitibine, abraxane and cisplaten. Prescribed 6 x 21 day cycles, 2 weeks on, 1 week off. The side effects have been brutal. Plummeting white count necessitated treatment with nulasta. Nausea treated with Ativan, compazine and zofran. Non-stop diarrhea treated with questron, Imodium and lomatil. Tincture opium has been added to combat the diarrhea as the others have no benefit. Fatigue is brutal. She's bedridden for 4 days after day 1 treatment of cycle and 7 days in bed after the day 8 treatment. If her numbers and scans are good after cycle 3, they're going to eliminate the cisplaten to try to lighten the side effects. Hopefully you weather the treatment far better than my poor wife. Good luck.

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Hi good luck to you and your wife. I have just started Gemcitibine and abraxane only and reading about her struggles is worrying me because I'm supposed to go to Hawaii with my son and daughter and grandchildren in July. I have stage 4 after 3 years NED with surgery, 6 months chemo. Cancer is in lungs as well now. My after chemo symptoms are extremely sleepy and tired, weak feeling but no diarrhea yet. I sure can't imagine how much you both have gone through. I had forfirinox before I think with 5FU and oxalyplaten. I got very ill with bronchitis, pneumonia, diarrhea but luckily my daughter is a physician at UCLA (internal medicine and geriatric ) medicine so I didn't have to go to hospital. I will speak to my doctor if I get more sick. Do you know it effects are cumulative? Thanks and Good Luck leigh

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@leighs2011

Hi good luck to you and your wife. I have just started Gemcitibine and abraxane only and reading about her struggles is worrying me because I'm supposed to go to Hawaii with my son and daughter and grandchildren in July. I have stage 4 after 3 years NED with surgery, 6 months chemo. Cancer is in lungs as well now. My after chemo symptoms are extremely sleepy and tired, weak feeling but no diarrhea yet. I sure can't imagine how much you both have gone through. I had forfirinox before I think with 5FU and oxalyplaten. I got very ill with bronchitis, pneumonia, diarrhea but luckily my daughter is a physician at UCLA (internal medicine and geriatric ) medicine so I didn't have to go to hospital. I will speak to my doctor if I get more sick. Do you know it effects are cumulative? Thanks and Good Luck leigh

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Sadly, the effects are cumulative. GA is supposed to be "well tolerated" compared to folfirinox/oxalyplaten. From my perspective, it's largely a matter of how debilitated you get at each step of treatment and how much you rebound before the next treatment. When I wrote the post above, my wife was early in the GAC/GA treatments. Ultimately she had 18 treatments (I don't use cycles because it underplays the amount of chemo and time). What we learned from that experience is push back hard on the oncologist if you're not getting good results on scans and the side effects don't seem worth the results. By my records, my wife should have changed treatment plans after 8 treatments; the next 10 brought no improvements in mets and the side effects brought her to the point of giving up. Good luck and hope you can make your planned travel.

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Have biomarker testing. This will decide which chemo or therapeutic treatments will work. It’s imperative to do that as soon as you find out.

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@cindysavant

Have biomarker testing. This will decide which chemo or therapeutic treatments will work. It’s imperative to do that as soon as you find out.

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My wife has had tumor and somatic testing since the start. She doesn't have any of the known mutations associated with pancan. The most recent test suggested that she might benefit from an immunotherapy currently in phase 1/2 for breast cancer and were waiting to see if they'll accept her in the trial.

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I did the original formulation of Folfirinox for metastatic disease to the liver beginning late 2012. After the first CT scan showed dramatic shrinkage, genetic testing was done. Precision medicine for pancreatic cancer was still relatively new then. A BRCA mutation was found that was sensitive to Oxaliplatin so it was confirmed I was being treated with the right drug for that mutation. I did 24 cycles and tolerated it very well. I did develop peripheral neuropathy in the finger tips and feet. Fingers resolved quickly. Feet took longer before I prevent was noted and it has nearly resolved after several years. As a 10 year survivor, Folfirinox made the difference.

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@beachdog

Sadly, the effects are cumulative. GA is supposed to be "well tolerated" compared to folfirinox/oxalyplaten. From my perspective, it's largely a matter of how debilitated you get at each step of treatment and how much you rebound before the next treatment. When I wrote the post above, my wife was early in the GAC/GA treatments. Ultimately she had 18 treatments (I don't use cycles because it underplays the amount of chemo and time). What we learned from that experience is push back hard on the oncologist if you're not getting good results on scans and the side effects don't seem worth the results. By my records, my wife should have changed treatment plans after 8 treatments; the next 10 brought no improvements in mets and the side effects brought her to the point of giving up. Good luck and hope you can make your planned travel.

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Hello Beachdog, thanks for all the information! I am at the end of the last treatment and hardly normal feeling but tomorrow I get a second dose. I think I just forgot how bad the folfirinox treatment was. Because people have said this is not as bad. I have heard that these treatment stop working as well with time. Your advise is good. I have already wondered if side effects are worth it but will have to see if it buys more time. My oncologist said if it stops helping we will switch. It just robs you of feeling like you can do much of anything. I had bad headaches raw mouth and lips, and just worse fatigue ever. Did your wife switch to another treatment after this chemo? thanks for your time in answering it helps me to know more about what other's have experienced. Thanks Sasha

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@leighs2011

Hello Beachdog, thanks for all the information! I am at the end of the last treatment and hardly normal feeling but tomorrow I get a second dose. I think I just forgot how bad the folfirinox treatment was. Because people have said this is not as bad. I have heard that these treatment stop working as well with time. Your advise is good. I have already wondered if side effects are worth it but will have to see if it buys more time. My oncologist said if it stops helping we will switch. It just robs you of feeling like you can do much of anything. I had bad headaches raw mouth and lips, and just worse fatigue ever. Did your wife switch to another treatment after this chemo? thanks for your time in answering it helps me to know more about what other's have experienced. Thanks Sasha

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My wife has been on onivyde/5fu since January. Every other week. First 6 treatments were getting excellent results, no new mets, no growth in suspect sites and huge drops in CA19-9 every treatment. But the side effects kept her bedridden from treatment to treatment and after the 6th treatment she took a 6 week break to recuperate. The CA19-9 shot up while she was out of treatment. She's had 4 treatments since resuming and the CA19-9 decreases haven't been substantial. She'll have another scan in 2 weeks to see if the after-break treatments are keeping the mets at bay despite the discouraging CA19-9 readings. Elsewhere I've written that the next possible plan might be for a clinical trial which is not specifically for pancan but addresses a mutation that her tumor expresses.

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