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.

@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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@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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@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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@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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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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@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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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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@cealia56

@199 Thank you for reaching out the info is very helpful. LOL😂 As nurses we know each other so well. In 3 weeks I have a 3 subject notebook set up. Someone said this journey is like having a job again. Appts, Phone calls, going to meetings you know you're going to feel worse coming out of the meeting.
I am VERY grateful for accidentally finding this now and I will do my part.
What are they doing for you as stage 4? Prayers always. If you need to talk to someone outside your circle message me.
I have a good ear.

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Some meetings I go to I feel better & some confused. Stage 4 inoperable really shocked me since I had been praised for early detection and told I was probably a stage one. My husband & I found out on a "zoom" meeting with the oncologist that I was stage 4 when I asked about my prognosis! We were speechless! Fortunately, my PCP locally had suggested I see an oncologist locally weeks before & that appointment was in 2 days. My local oncologist was very positive and frank in what was going to happen. Within 3 weeks I had my port and started chemo! My CA 19-9 was around 450 then & slowly it came down over the next months. My CT scans showed some improvement & after 44 treatments with gemcitabine & Abraxane, I am now taking a "break". I will find out how that is going after the 25th/28th when my CT, labs & oncology appointment occur. This is now a stressful time. Scary to be without chemo, but my body was telling me I had to take a break.
When my local oncologist told me in the first visit that I would be in "palliative" care, I was really down since I saw "palliative" care in the light of hospice and not as ongoing cancer care. After searching that definition, I was much relieved.
Sometimes you need to fight with providers or teach them about things you discover. I had such edema from being on pregabalin that I finally took myself off of it! Breasts still have edema, but my feet & legs are 100% better! I won my fight with the VA over acupuncture but the VA made me give up my Tai Chi, so now I get 1 tx every 3 weeks. Since it has been helping I will pay for tx too!
Prayers to you, also. If you need to talk, message me also 🙂

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@davod

Has anyone on this panel ever used broccoli sprouts to help stop the spread of cancer? I have read at the N.I.H. and Johns Hopkins websites that using broccoli sprouts that has a concentration of a substance called sulforaphane can help stop the progression of various cancers.

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Has anyone on this panel ever used broccoli sprouts to help stop the spread of cancer? I have read at the N.I.H. and Johns Hopkins websites that using broccoli sprouts that has a concentration of a substance called sulforaphane can help stop the progression of various cancers.

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@ncteacher

Hello! Welcome to the Mayo board. I also have stage 4 inoperable pancreatic adenocarcinoma. I was diagnosed in late March 2023 and staged 4/6/23. I can certainly understand all of your concerns. This disease is challenging, and fighting it is a real slog, day by day. It is difficult to keep spirits up. I'm glad your MD is in touch with the Johns Hopkins folks; that should help you get the appropriate treatment. But of course, you are always free to seek a second or third opinion elsewhere. Why did your wife change oncologists? I changed early in my treatment because my first oncologist, um, lacked bedside manner, let's say. (He was sharp and dismissive.) I also hope that you have some community support in your area and resources such as grocery delivery to help you manage everything. Please feel free to browse the board and research topics and post questions. I have found the people here to be so friendly and forthcoming, and I'm sure you will too.

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Hi. Thanks. Yes my wife is the same as you. Stage & type of pancreatic cancer. Apparently they have a hard time keeping oncologists at our clinic. Been through 4 only because they are temporary and move on to other cities. She is on talfinar and mekinist pill treatment just started. Hoping it keeps her level as we pray for a future cure. Thanks for the reply. Great site to locate others going through the same things

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