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.

@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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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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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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@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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@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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@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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@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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@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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@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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I would challenge the insurance decision it is widely known that Abraxane alone is not as effective. I’ve never heard of the two being denied !

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I'm surprised insurance would cover Abraxane but not Gemcitabine. Usually it's the other way around, as the Abraxane is a very expensive drug.

For my first year on GAC, I used the AbbVie patient financial assistance program to pay for the Abraxane. Insurance covered it for the second year, and just renewed their approval for another year.

@montyd , I've been very fortunate in the weight department. I had lost about 30 pounds before my original PDAC diagnosis, and gained it all back during 6 months of Folfirinox. I lost 15 pounds after my Whipple, and gained it all back within 4 months. After my recurrence, I maintained weight for the first 15 months of GAC and 4 months of a clinical trial. I then resumed GAC, but lost 20 pounds after my gastric outlet obstruction, then slowly regained 10 pounds on the 2000 calorie/day TPN regimen. After insertion of a stent, I was able to supplement my TPN with some oral food consumption, and the other 10 pounds came back in a flash (starting at Thanksgiving, which is also when I dropped the Cisplatin).

I attribute much of my weight gain to my wife being a really, really good cook!!! 🙂 Unfortunately though, I'm burning far fewer calories per day than I was before the obstruction, because the TPN and chronically low hemoglobin have turned me into a fatigue-ridden couch potato.

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My husband was on folfirinox first... every other week with pump for 6 months. Then reduced to a maintenance dose for a few months. But, CA19-9 started to go up, and new spots seen in the scans. Switched to G/A a few months ago... once/week for 3 weeks then one week off. Not as harsh for him as the folfirinox but still often could also be described like markymark as a fatigue ridden couch potato. He's at the end of his week off right now and has a little more energy.
He lost weight on folfirinox... those last few months of it were really rough on him. Regained the weight when on the maintenance dose. Now has put on more weight... I guess from me bugging him to eat, plus he's just not burning any calories when couch surfing.
Latest CA19-9 numbers down in the 300s which sounds high unless you compare them to the 39,000 + of 15 months ago. I'm hoping if numbers continue to come down, and scans look good that he can get to an every other week treatment schedule so he can regain something a little more similar to how he used to live. I don't think he will get back to backpacking and whitewater kayaking... but maybe some short skis or short hikes or kayaking on a lake would be nice. I'm dreaming at this point.... just hoping he can do something outdoors again at some point as it has been a frustrating journey for him. He walked the mile to get the mail with me today and that is something! He was a strong, healthy, very active 69 year old when this was diagnosed and I think that helped with the battles he's endured so far.

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