Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

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

Profile picture for markymarkfl @markymarkfl

Folfirinox is generally considered a harder chemo treatment to tolerate than Gemcitabine + Abraxane (GA). I started GA + Cisplatin 2 years ago after my post-Whipple recurrence with metastasis, and am doing well on it -- better than I did pre-Whipple on Folfirinox. It depends a lot on the patient (individual responses vary widely). Wish I had done the GAC before Whipple.

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Were you able to maintain weight on the GA?

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Profile picture for tsale @tsale

I do have questions for the oncologist , I know insurance would not approve the chemo regimen his oncologist at UCI recommend so now he is on just Abraxane twice a month for 6 months

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Abraxane (nab-Paclitaxel) is not typically used as monotherapy. For metastatic cancer, it is used in combination with Gemzar (Gemcitabine) as this combination through clinical trials and studies has shown to improve overall survival, progression-free survival and response rates. The IMPACT clinical trial is the one showing this data. If someone no longer was responding to Folfirinox or had DYPD and UTP1A1 deficincies involved with metabolizing 5-FU and irinotecan respectively, or lacks the specific enzyme to metabolize Gemcitabine or otherwise does not tolerate it well, then the choices are going to a second-line duel drug therapy or trying Abraxane alone. There is limited evidence in supporting its efficacy as a monotherapy and the reason why it is not done as common practice.

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Profile picture for stageivsurvivor @stageivsurvivor

The combination Gemzar/Abraxane is much more effective as a combination. I was given just Gemzar alone initially in 2012 after my Whipple surgery as Abraxane was not yet FDA approved and that’s when the trouble started.

Having one positive lymph node positive indicates metastatic cells broke off from the primary tumor. That increases the chance there could have been undetected circulating tumor cells that are micrometastatic and undetected due to the limitation of the sensitivity of imaging systems. The combination Gemzar/Abraxane is added insurance to eliminate and undetected minimal residual disease which is implicated in recurrence in up to 80% of patients within two years post Whipple and adjuvant chemotherapy.

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I do have questions for the oncologist , I know insurance would not approve the chemo regimen his oncologist at UCI recommend so now he is on just Abraxane twice a month for 6 months

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Profile picture for tsale @tsale

Can you tell me how you are doing on Abraxane my brother Frankie just started chemo last week it is twice a month for six months , he had the Whipple surgery August 16, 2024 and all the tumor was removed from the head of the pancreas he had one lymph node positive out of 27 And no spread of the disease I was just very surprised that he was having Abraxane for treatment since I read it is a very strong chemo And for advanced or metastasized pancreatic cancer.

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The combination Gemzar/Abraxane is much more effective as a combination. I was given just Gemzar alone initially in 2012 after my Whipple surgery as Abraxane was not yet FDA approved and that’s when the trouble started.

Having one positive lymph node positive indicates metastatic cells broke off from the primary tumor. That increases the chance there could have been undetected circulating tumor cells that are micrometastatic and undetected due to the limitation of the sensitivity of imaging systems. The combination Gemzar/Abraxane is added insurance to eliminate and undetected minimal residual disease which is implicated in recurrence in up to 80% of patients within two years post Whipple and adjuvant chemotherapy.

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Profile picture for tsale @tsale

Can you tell me how you are doing on Abraxane my brother Frankie just started chemo last week it is twice a month for six months , he had the Whipple surgery August 16, 2024 and all the tumor was removed from the head of the pancreas he had one lymph node positive out of 27 And no spread of the disease I was just very surprised that he was having Abraxane for treatment since I read it is a very strong chemo And for advanced or metastasized pancreatic cancer.

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My husband is on Gem-Abraxane; has been for almost a year - 3-week intervals between sessions now but initially once a week for 3 weeks a month and then once a fortnight before oncologist spaced it out to once every 3 weeks. He did not respond well to Folfirinox. Like many people have said on this forum, it depends on the individual. Gem-Abraxane works for my husband. I am told that the reason the oncologist is doing this long-term is because pancreatic cancer is aggressive and oncologist does not know if there are cancer cells still in the body after surgery to remove the tumour.

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Hello! I am doing fine on the Abraxane/Gemcitabene, during the Abraxane infusion I keep my gloved fingers in ice and my feet (in socks) wrapped in ice, to curtail the neuropathy. I have neuropathy due to the oxaliplatin portion of the Folfirinox that I had received, so the ice is to prevent the neuropathy from getting worse. The Gem/Abrax I would say is much easier than the Folfirinox. A bit of diarrhea, a bit of tiredness, that's all. I did have one episode of fever and a spike in my ALT liver enzyme, but my surgeon thought that could have been due to reflux into my bike duct causing an infection, rather than a reaction to the chemo. I would ask why your brother is receiving it, and whether he is also receiving Abraxane as the two usually go together. Best of luck!

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Profile picture for tsale @tsale

Can you tell me how you are doing on Abraxane my brother Frankie just started chemo last week it is twice a month for six months , he had the Whipple surgery August 16, 2024 and all the tumor was removed from the head of the pancreas he had one lymph node positive out of 27 And no spread of the disease I was just very surprised that he was having Abraxane for treatment since I read it is a very strong chemo And for advanced or metastasized pancreatic cancer.

Jump to this post

Folfirinox is generally considered a harder chemo treatment to tolerate than Gemcitabine + Abraxane (GA). I started GA + Cisplatin 2 years ago after my post-Whipple recurrence with metastasis, and am doing well on it -- better than I did pre-Whipple on Folfirinox. It depends a lot on the patient (individual responses vary widely). Wish I had done the GAC before Whipple.

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Can you tell me how you are doing on Abraxane my brother Frankie just started chemo last week it is twice a month for six months , he had the Whipple surgery August 16, 2024 and all the tumor was removed from the head of the pancreas he had one lymph node positive out of 27 And no spread of the disease I was just very surprised that he was having Abraxane for treatment since I read it is a very strong chemo And for advanced or metastasized pancreatic cancer.

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My pathology also showed spread to 3 of 26 lymph nodes and nerve involvement after my Whipple, although margins were clear. But CT scan 2 weeks after 12th round of Folfirinox showed metastases to liver and soft subcutaneous tissue in my belly, and my CA19-9 rose to 322. Even though my CA 19-9 remained below 11 all during my treatment, Oncologist says this means the Folfirinox did not work. I am now on Gemcitabene/Abraxane and my CA 19-9 is coming down again, here's hoping it can get the beast under control.

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Briefly, I have been through the following:
- Jul. 23, failed Whipples operation
- Aug. 2023 – Jan. 2024, 13 treatments with Folfirinox (100%)
- Feb. 2024, successful Whipples operation
- Mar. – Jun. 2024, 6 treatments with Folfirinox (75%)
- nov. 2024 latest CT scan, no visible metastases, and CA-19 remains within the normal range

Unfortunately, the pathology report after the 2nd Whipples operation showed that there was a lymph metastasis and spread along nerve pathways.

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