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 gamaryanne @gamaryanne

@jolo24 What mutation(s) does this targeted therapy go after?
Is this a clinical trial?

Hoping there is something else out there besides the Rev Med drugs.

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@gamaryanne , Another player targeting KRAS is Elicio Therapeutics.

They have some trials going on for their ELI-xxxx series of drugs:
https://clinicaltrials.gov/search?term=Elicio%20

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Hello! and than you for asking!
So far so good, These past months my CT scans have come back uneventful, as well as negative Signatera blood biopsies. I have my next round of CT scans and blood biopsy next week.
I pray and hope that all continues to be normal. In the meantime, I focus on staying active, eating healthy, doing volunteer work at my local hospital, and living with gratitude. I do continue to check daily on this Mayo Pancreatic Cancer group to help with my input and experiences wherever I can help.

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Profile picture for carfbuch @carfbuch

Hello Everyone, I was diagnosed with a 3 cm Mucinous Cyst on the head of my pancreas, and advised by Dr. to get a Whipple procedure as the cyst has a high probability of turning cancerous. Two questions I have as I consider the Whipple procedure, Is an Open Whipple or a Laparoscopic Whipple better? What are some of the most common permanent conditions after Whipple? Thank you for your feedback!

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What ever happened to you?

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Profile picture for gamaryanne @gamaryanne

@jolo24
Was the targeted therapy after a mutation?
Can you share which ones?

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@gamaryanne
The mutated gene is the BRAF. (BRAF V600E). My wife has a rare form of pancreatic cancer, aligned mostly with Colon cancer.
She has the "Acinar." Most have the "Aden." She does not have the BRACA gene.
The "Targeted Therapy" is NOT a clinical trial and she has never been given radiation treatment for her cancer. Just Chemo in the beginning, which did nothing for her.
Thus, they placed her into the targeted treatment to attack her tumors.
These treatments are found under the NCCN guidelines for viable treatments.
Hope that answers your question.

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@jolo24
Was the targeted therapy after a mutation?
Can you share which ones?

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Profile picture for jolo24 (Joe) @jolo24

@ 56pan,
The targeted therapy treatment is Tafinlar (dabrafenib) & Mekinist (trametinib) maker Novartis, I believe. It is in pills form taken at home. Not radiation. Watch the dosage as the original dosage placed my wife in the hospital.

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@jolo24 What mutation(s) does this targeted therapy go after?
Is this a clinical trial?

Hoping there is something else out there besides the Rev Med drugs.

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Profile picture for jolo24 (Joe) @jolo24

@ 56pan,
The targeted therapy treatment is Tafinlar (dabrafenib) & Mekinist (trametinib) maker Novartis, I believe. It is in pills form taken at home. Not radiation. Watch the dosage as the original dosage placed my wife in the hospital.

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Understood. Thanks for your time.

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Profile picture for 56pan @56pan

Sir, could you elaborate some on the "targeted therapy"? Is this SBRT, a radiation treatment?

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@ 56pan,
The targeted therapy treatment is Tafinlar (dabrafenib) & Mekinist (trametinib) maker Novartis, I believe. It is in pills form taken at home. Not radiation. Watch the dosage as the original dosage placed my wife in the hospital.

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Sir, could you elaborate some on the "targeted therapy"? Is this SBRT, a radiation treatment?

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Hello everyone! I am a caregiver for my wife who was diagnosed with Acinar Cell Carcinoma (ACC) BRAF V600E mutated gene in December 2021. She has been though hell the past four years. Many rounds of Chemo as well as surgery to remove three quarters of her pancreas and several lymph nodes. The chemo after the surgery was unsuccessful and ultimately untolerable. Sick all the time and loss of appetite, which caused her severe weight loss. After going through several Oncologists, we finally got her approved for "Targeted Therapy" which reduced the tumors and took the cancer away completely last year. The initial high dosage did put her in the hospital with a severe urinary tract infection, but once the dosage was reduced, it worked wonderfully. Unfortunately, the cancer returned this year after being removed from all medication last year with scans coming back clear. Now after weeks of fighting the insurance company to re-approve the "Targeted Therapy", today finally approved so we are hopeful we can get control of the cancer once again. My advice to those being diagnosed, don't give up. There are new treatments coming every day. I thank God for the days we have and we live day by day with this terrible disease. God Bless you all! My thoughts are with everyone dealing with the pain and uncertainty and those caring for their loved ones.

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