@tpl

@bede joined the Pancreatic Cancer group just days before you. I have moved your posts to this existing discussion:
- Need advice: Stage 2 pancreatic cancer https://connect.mayoclinic.org/discussion/need-advice-2/

I did this so you can get the knowledge shared in previous posts and connect more easily with other pancreatic cancer patients and caregivers like @drewgrebe @susan2018 @marvinjsturing @lml @kjrita @allis9560 @dakotarunner @pat3383057

@stageivsurvivor, did you see the great follow-up questions @tpl asked of you in this post https://connect.mayoclinic.org/comment/730417/
Your experiences are so helpful.

@tpl, you might find info you're looking for in this discussion:
- CA 19-9 and pancreatic cancer: What do the numbers mean? https://connect.mayoclinic.org/discussion/ca-19-9/

@bede, I see your surgery is coming up. You might appreciate this related discussion:
- Whipple procedure: What is the recovery like? https://connect.mayoclinic.org/discussion/pancreatic-cancer-whipple-procedure/

Bede, Do you have any questions of the group as you prepare for surgery in a few days?

TPL: I had Whipple surgery less than 3 days after being diagnosed and started chemo 8 weeks after surgery. They wanted to do the Whipple on a Saturday morning and at my request was held off until Monday morning. After the first six cycles of Folfirinox, the CT scan showed 54% shrinkage of all six tumors in the liver. As a result of that observation, I was again asked about the family history of cancer. Basically all the females on the maternal side of the extended family has or died from breast cancer. I mentioned that the first cousin of my Mother (her Mother and my Grandmother were sisters) and her two daughters were tested for BRCA mutations and found to be BRCA2. My Mother and Grandmotherwere not tested because of the test not in existence when they were diagnosed. But looking at the family tree, My Grandmother and her sister had the gene too. I was tested by liquid biopsy and found to have BRCA2 that was driving my cancer.

My Whipple was done at Weill Cornell Medical Center/NY Presbyterian by Hepatobiliary Chief of Surgery Daniel Cherqui and assisted by Dr. Michael Kluger. Cherqui is back in Paris, France and Kluger is now at the Pancreas Center of Columbia Presbyterian Medical Center in NYC. Both have extensive experience in Whipples, Transplantation and Vascular surgery. Cherqui had done over 1500 when he did my surgery. Chemotherapy was overseen by the Director of Solid Tumor Oncology Manish Shah. It was the original formulation of Folfirinox which is 20% more concentration than (m)Folfirinox but both have the same efficacy.

My CA19-9 all through my treatment ranged between 5 to 7 U/mL. PACC tumors do not secrete CA19-9 so it can not be used to monitor effectiveness of chemo in my case. All tumor measurements were done using CT scans compared to the baseline scan and current to prior scan. Comparison of size using scans is the most accurate method to assess efficacy of treatment.

The clinical trial was targeted therapy using the PARP-1 inhibitor drug Rubraca (Rucaparib). It targets the BRCA1, BRCA2, PALB2 mutations and is now used targeting the ATM mutation. One needs one of the above mutations for using a PARP inhibitor but they are now starting to look at other mutations to see if combined with other Chem drugs it will have an effect. I was the first pancreatic cancer patient in the world to receive Rucaparib as it was known then in 2014. It took 18 months of oral dosing to have a complete response and then be declared N.E.D. In 2018 it received FDA approval for treating ovarian cancer and took the name Rubraca for marketing it. The oncologist who was the Principal Investigator is Susan Domchek, MD. She is the director of the Basser Center for BRCA at PennMedicine Abramson Cancer Center. She is a breast cancer specialist and too long a story on why I am her only pancreacancer patient but it has to do with she creating that initial trial. She was treating breast cancer patients with Olaparib and her husband is a pancreatic cancer researcher. The two off them had a discussion and came up with the idea to see if PARP would be effective against the same gene mutation found in ovarian and breast cancer if tried against pancreatic cancer. The trials involving BRCA, PALB2, ATM and treated with PARP are now headed by Dr. Kim Reiss-Binder at PennMedicine whose specialty is pancreatic cancer.

All through the standard of care chemo and for the 18 months of the clinical trial and one year post trial, CT scans were done every 3 months. At five years from diagnosis the frequency went to 3X/yr. During year 6 I was concerned about the toxicity of IV contrast dye of the kidneys so I got a CT of the chest without contrast and the abdomen and pelvis was by MRI without/with contrast using Gadolinium. At year eight, I was told the scan could go to yearly but I requested every 6 months so as to detect disease earlier and not run the risk of having a scan, disease surface right after the scan and going nearly a year undetected. At year 10, the CT w/o contrast was eliminated due to increasing risk of developing a secondary cancer in the lungs due to radiation exposure. Although a CT is much better for surveillance of the lungs, the radiologist was in agreement to do it by MRI and Medicare agreed to pay even though it is not standard protocol. Eliminating exposure to radiation was the justification and Medicare agreed with my oncologist. I never had a PETscan and there was never justification in needing one. As part of the clinical trial started in 2014, a side study was measuring ctDNA. It is an extremely sensitive technique for early detection of reoccurrence.

This YouTube video is a presentation of my case and information on targeted treatment with PARP inhibitors-