Pancreatic Cancer Group: Introduce yourself and connect with others

@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.

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

@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.

Understood. Thanks for your time.

@ 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.

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

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.

@12cows6025, how is chemo going? How are you doing?

I too was diagnosed with cholangiocarcinoma on July 1 2022, and had a robotic whipple surgery. The surgeon removed my gallbladder. I wonder why your surgeon didn’t remove your gallbladder. I developed other issues because he built a bile duct out of other tissue and it started to close, so l had to have biliary tubes inserted to keep the duct open. I had to have the procedure every 2 weeks to replace the smaller tubes with bigger tubes. This took 6.5 months. I am doing okay, but I have started to feel some discomfort in my abdomen since last week. I go for a mri next week.

Welcome, @12cows6025. I hope that chemo treatment with fluorouracil (5FU) is going okay.

You may wish to join @mnewland99 and others in this discussion:
- Treatment for metastasis to the lungs?
https://connect.mayoclinic.org/discussion/treatment-for-metastasis-to-the-lungs/