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.

Thank you for your reference. I have read a little about the use of broccoli sprouts for cancer but the information is limited. This is why I would like to know if anyone on the panel or their survivors know of anyone who has ever used these sprouts for treatment of their pancreatic cancer and if so what the effect was.
Thanks.

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@davod

Thank you for your reference. I have read a little about the use of broccoli sprouts for cancer but the information is limited. This is why I would like to know if anyone on the panel or their survivors know of anyone who has ever used these sprouts for treatment of their pancreatic cancer and if so what the effect was.
Thanks.

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davod,

Sorry, but I have no first hand knowledge.

I scanned quite a few document on-line, and saw little to indicate any real correlation or clear ability for broccoli sprouts to affect cancer treatment. If there had been, I can only speculate the scientific community would have synthesize the components by now.

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@davod

Thank you for your reference. I have read a little about the use of broccoli sprouts for cancer but the information is limited. This is why I would like to know if anyone on the panel or their survivors know of anyone who has ever used these sprouts for treatment of their pancreatic cancer and if so what the effect was.
Thanks.

Jump to this post

I also have no first-hand knowledge, but I was curious since I'd never heard anything about this. I poked around on the MSKCC link and spotted this under the "what else do I need to know" header:
"Talk to your healthcare provider if you have advanced pancreatic cancer. Using high-dose broccoli sprout supplements while on chemotherapy can increase nausea (feeling of throwing up) and vomiting (throwing up)."
I didn't see anything that suggested the substance should be used as a treatment. Is this something you're using currently or considering?

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@ncteacher

I also have no first-hand knowledge, but I was curious since I'd never heard anything about this. I poked around on the MSKCC link and spotted this under the "what else do I need to know" header:
"Talk to your healthcare provider if you have advanced pancreatic cancer. Using high-dose broccoli sprout supplements while on chemotherapy can increase nausea (feeling of throwing up) and vomiting (throwing up)."
I didn't see anything that suggested the substance should be used as a treatment. Is this something you're using currently or considering?

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Yep, good link, as are most at MSKCC...

That page had 4 mentions of pancreatic cancer:

1) "Talk to your healthcare provider if you have advanced pancreatic cancer. Using high-dose broccoli sprout supplements while on chemotherapy can increase nausea (feeling of throwing up) and vomiting (throwing up)."

2) "In patients with prior melanoma, a broccoli sprout extract was found to be well tolerated (15). A feasibility study involving advanced pancreatic cancer patients found some benefits with broccoli sprout supplementation but noted difficulty in capsule intake by some participants, and to be associated with increased digestive symptoms (19)."

3) is a word-for-word repeat of #2.

4) Is the link to reference (19) in #2:
Lozanovski VJ, Polychronidis G, Gross W, et al. Broccoli sprout supplementation in patients with advanced pancreatic cancer is difficult despite positive effects-results from the POUDER pilot study. Invest New Drugs. 2020 Jun;38(3):776-784
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7211206/

It's a long report, but a summary of its summary includes"

"Compared to those of the placebo group, the mean death rate was lower in the treatment group during the first 6 months after intake (day 30: 0%/18%, day 90: 0%/25%, and day 180: 25%/43%), and Kaplan-Meier analysis revealed a higher survival rate. There was a high drop-out rate (72% in the treatment group and 55% in the placebo group) after 1 year. We concluded from the Karnofsky index that the broccoli sprouts did not impact patient’s self-care and overall abilities severely. The intake of 15 capsules daily was difficult for some patients, and the broccoli sprouts sometimes increased digestive problems, nausea and emesis. We did not obtain statistically significant results (p = 0.291 for the endpoint at day 180), but the knowledge about the feasibility is the basis for the development of new sulforaphane drugs."

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@ncteacher

I also have no first-hand knowledge, but I was curious since I'd never heard anything about this. I poked around on the MSKCC link and spotted this under the "what else do I need to know" header:
"Talk to your healthcare provider if you have advanced pancreatic cancer. Using high-dose broccoli sprout supplements while on chemotherapy can increase nausea (feeling of throwing up) and vomiting (throwing up)."
I didn't see anything that suggested the substance should be used as a treatment. Is this something you're using currently or considering?

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I was diagnosed with stage 4 pancreatic cancer in November 2023. Since I am 78 and have several comorbidities the oncologists I have talked to say that the chemo/radiation treatments would probably kill me before the pancan would. I have been eating broccoli sprouts that I purchase at a local store twice a day for about 6 weeks now. I have no nausea or vomiting but am considering using the capsules which would be easier. Just wanted to know if anyone else had tried it. I will continue to report back if anything negative occurs or if the cancer stops progressing which is what I was hoping for. I know it's unlikely but it's better than just waiting to die.

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@patti303

Have you contacted pancan.org for options in your geographic area? I have found PanCan.org very helpful in providing information on oncologists, surgeons and clinics. University of Pennsylvania does PDAC research (for one), although I don't know how robust their Pancreatic Cancer department is for your situation. Pancan.org can provide quite a bit of information that may be of help.

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University of Pennsylvania/Abramson Cancer Center is a leading center for pancreatic cancer research. The Abramson Cancer Center is headed by Robert Vonderheide, MD-D.Phil who himself is a renowned pancreatic cancer researcher and heads his own research lab. Working for him are Carl June, MD who is a pioneer in CAR-T cell therapy and 2023 Nobel Prize Winner Drew Weissman MD, PhD for his development of mRNA being used for vaccines including a pancreatic cancer Vaccine.

Also at Penn is Pancreatic clinician-scientist Peter O’Dwyer MD who is co director of the Eastern Comprehensive Oncology Group (ECOG-ACRIN)-a non-profit cancer research organization that is a leader in planning, developing and conducting clinical trials. Serving on the ECOG GI Cancers Committee as co-chair is Kim Reiss-Binder, MD of Penn-an expert in treating BRCA and PALB2 gene mutation pancreatic cancers with PARP inhibitors and conducts clinical trials. Her colleagues at Penn-Geoffrey Beatty MD, PhD and Mark O’Hara MD specialize in immunotherapy treatment and clinical trials. Other pancreatic cancer oncologists are Dr. Argawa and Dr.Guggenheim.

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Impressive research there. Ive read you have a good scientific background, can you briefly explain the link between CAR-T cell therapy and Claudin 18.2? I have ATM related mutation (base substitute 40). Also, does the vaccine work if you are at stage 4, or is it just preventative if you’ve been cleared at say Stage 1 or 2? Thanks!

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Hi there, I´m a 66 yrs old man currently residing in Chile where I was diagnosed PANCAN back in July 2022. I had a 2.5 cm tumor in the head of my pancreas. It was determined that I was elegible for Whipple, and given the option to have neoadjuvant chemo, decided to go for the surgery right away (end of July 22). The surgeon that performed the operation is highly respected for the numerous successful Whipples he performs. The 7 hr procedure went well; the pathology report indicated that all 11 lymph node tested were negative and just the mesentheric artery showed positive (wrapped at 60 degrees). Began 12 cycles of Folferinox in Oct22; tolerated them relatively well, but had very low white and red cells count. Developed anemia and had to have a blood tranfussion; also had "FERINJECT" iron supplement. After the chemo I had 25 sessions of Radiation (5/week times 5 weeks). Had a tougher time tolerating these, went through them anyways. Completed Radio by the end of July23. Since I had regular checkups which included blood and CT. First one in Oct23, CT normal, CA19-9 down to 17. Next checkup in DEC23 showed the CA19-9 had risen to 37. The oncologist requested that I had another set of blood an CT before I saw him in Feb24; this time CA19-9 was 57, andthe CT showed a suspicious spot on my liver and an MRI was taken. The MRI confirmed that if was a 0.6 cm lesion, and recommended to "watch it closely". After discussing with the oncology team, we decided not to wait much longer and will begin a 12 cycle of Folferinox to begin in a week. When discussing survival time between having the chemo vs not, I got the standard answer: "4 months on the lower side (no chemo) and 12 on the higher" this is the same I was told when I began the first process.
Additionally my surgeon is recommending to remove the spot after the 4th cycle of chemo, ONLY IF a PET Scan an and MRI confirm that the lesion hasnt progressed in size nor into other organs; the go back to complete the remaining 8 cycles of chemo. The oncologist agreed, although he indicated to me that "there isnt enough data that supports that his woulD help. He said: "go ahead and do it if it gives you a piece of mind, it wont hurt"
I would like to hear from people in the group that has experienced or has knowledge of something like what I have described.
As a side note, my biggest issues are gastric, as I read happens to most of the people that have gone through Whipple. I take Creon with my meals, Additionally, I am celiac wch further complicates things.
Sorry for the long post, but I wanted to try to give as complete of a picture as I could. Thanks in advance for all of your support. Best CJM

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hi, wanted to indicate that the finding of the metastases on my liver implies that my cancer has advanced to stageIV. The oncology team indicates that all care from this point on are palliative. Understand what the term stands for, but not sure that the is any chance at all of a long survival time. Best regards

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@mordka

hi, wanted to indicate that the finding of the metastases on my liver implies that my cancer has advanced to stageIV. The oncology team indicates that all care from this point on are palliative. Understand what the term stands for, but not sure that the is any chance at all of a long survival time. Best regards

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Hello @mordka and welcome to the Pancreatic Cancer support group on Mayo Connect. I can understand that you would like to meet others who have had a similar experience. I would like to invite two members of Connect who have had successful treatments for advance pancreatic cancer. They are @stageivsurvivor and @markymarkfl. I think you will find their experiences to be very helpful to you.

In the U.S. palliative care is for people with serious illnesses. Here is a link to some information from Mayo Clinic's website about this type of care,
--Palliative Care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637

What are your most difficult symptoms now, @mordka?

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