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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?
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@sthakral, treatments can be harsh. Did your dad's doctors talk to your family about palliative care? Palliative can focuses on comfort and symptom management. Let me know if you want more information if you haven't heard of palliative care.
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1 ReactionThat’s wonderful news kjrita! I always like to hear about survivors! Which mutation did you have? ATM, KRAS12D?
Thank you, Rita Ann. It’s good to know there are other paths to long term survival besides the simplistic plan offered to me.
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2 ReactionsHello @steffi2 , I am sorry to hear about your pancreas cancer diagnosis. I am a five + year survivor that worked with Dr Truty at Mayo, Rochester. His plan for me included Folfirinox, and then Gemcitabine/Abraxane, which was followed by radiation and then, surgery. I had a pancreatectomy on 10/23/18. I am cancer free and am fully recovered. I now wear a OmniPod 5 insulin pump and Dexcom G6 CGM. They communicate with each other and it helps me avoid blood sugar lows. You could check out my blog which is more for emotional support for those walking through a cancer diagnosis to healing: RitaAnn.org/blog Peace to you, Rita Ann
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7 ReactionsThanks, Colleen. Borderline resectable. FOLFIRONOX. CT 2-3 months. Whipple if tumor lifts away from blood vessels.
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1 Reaction@steffi2, I add my welcome. What have you learned about your treatment plan? Any update?
Got it. Thank you. I'll reply to your private note shortly.
Welcome, @suelan55. Here are couple of discussions that might be relevant for you:
- Switching to chemoradiation (Xeloda + radiation): What to expect?
https://connect.mayoclinic.org/discussion/questions-about-chemo-radiation/
- Whipple procedure: What is the recovery like?
https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/
Or maybe you have some tips to offer in this discussion:
- Anyone have light headedness from chemo (folfirinox)? https://connect.mayoclinic.org/discussion/light-headed-from-chemo/
Warren,
I sent you a private message related to the inquiry on Berberine. Please check your connect.mayoclinic account in-box and let me know about the proposal by private message.
Steven
Hello Warren,
Thanks for details on your case, questions and the publication on the Berberine study for addressing chemo resistance. The graphics and dot plots in Figure 3 of the flow Cytometry data showing cell cycle arrest in S and G2/M phases and the dot plots showing inducement of apoptosis is some of the same technique did in the research lab using a very sophisticated Flow Cytometry instrument to generate that type of data.
After Whipple, it was unbeknownst to me that metastatic disease was detected in a post-surgical CT done 7 days after. All that was communicated to me in 2012 was no intestinal blockage. The tumor board met and based on their awareness, decided on palliative care only with Gemzar. Abraxane was not yet FDA approved until 2013. My liver did not make the enzyme necessary to metabolize Gemzar so it was ineffective right from the first cycle.
When the first treatment CT scan was done showing significant growth of many tumors in the liver, Inagain advocated for Folfirinox as I did before chemo was ever started but my willingness to do it was apparently not communicated to the tumor board. As soon as the CT results were available the very morning I was about to receive another chemo cycle, Folfirinox was administered and continued for 24 months every 15th with no issues to cause a pause, break or change in treatment.
I happen to know Daniel Von Hoff MD who was the pioneering oncologist that conducted the clinical trials on Gemzar , Gemzar plus Abraxane vs Gemzar and then Gemzar/Abraxance vs. Folfirinox. I will phone him today and ask if he has knowledge of studies using Berberine to enhance Gemzar. I will also be seeing him in early August at a meeting.
Of note is the paper on Berberine is a more recent one published in 2022. It was encouraging that the study used organoids of human cells. Although no results from an in-vivo study on humans, this is as close as it gets in pre-clinical studies after animal models for safety before a phase 1 trial. The question is if a group upas proposed or conducting a phase 1 trial? I’ll do a search on clinicaltrials.gov.
If there is no clinical trail for Berberine, did you have Next Generation Sequencing of a tumor done for molecular profiling? If yes and no mutations or actionable biomarkers were detected, there is a category of clinical trials using small molecule drugs that target the cell energy and respiration cycles or drugs that blocks the cell signaling pathway causing apoptosis and cell death. #PanCan.org can do a search for clinical trials of this nature by calling 877.272.6226, M- F, 7:00am-5:00pm PT.
As for incorporating Berberine into treatment, the first person to consult about taking a supplement with chemotherapy is the hematology/oncology pharmacist. If you are at a comprehensive cancer center for treatment, the infusion clinic likely has a satellite pharmacy staffed with hem/onc pharmacists. If you were not introduced to this important care team member, ask the IV infusion nurse to make the introduction or be on the lookout for a person with a white lab coat delivering the IV infusion bags with the chemo to your cubicle. The next person to discuss assuming there is no interactions with all the medications you may be on is your oncologist. And then for the oncologist and hem/onc pharmacist to consult.
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