Need advice: Stage 2 pancreatic cancer

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-

Here is a YouTube video on how CA19-9 is used in measuring treatment effectiveness. It is part of the Pancanology series of videos made by long-term PDAC survivor David Dessert.

I had a ca19-9 blood test. It had gone up 700 in 6 weeks. They found a new nodule on my lungs. I had a PET SCan. Waiting for results. But they are not doing surgery now. They say chemo and radiation. My CT scan indicates shrinkage to pancreatic tumor. Surgeon says hard to measure. My tumor is .6 cm from 1.5 cm. I’m kinda of trying to evaluate all of this. I do not want radiation to abdominal area. Can anyone offer information?

Bede, did you get the results of the recent PET Scan? Would the suggest radiation be to the abdomen or for the nodule on the lung? What concerns you about radiation to the abdominal area?

I don’t have a definitive treatment plan. All treatment had been stopped until I have a lung biopsy (IR) on 9/16. I have a history of fungus in lungs, while on chemo. I had been on Cresemba for 3 years but stopped when pancreatic ca diagnosed. They put me back on yesterday until lung biopsy. I just don’t want to ruin other organs with radiation. But it sounds like that may be tx of choice, as we go forward.

Hi @pat3383057
I feel hopeful reading your reply. My mom just turned 79 and her MRI MCRP showed a mass on the tip of her pancreas. She had a minor stroke a month ago and last Sunday I took her to the ER due to fatigue and mild fever. I was worried she had another stroke but after 2 days of running many tests, they found a mass on her pancreas and the doctor thinks it's cancer. Since she has no symptoms and they found this mass by incident, I am hoping that if the biopsy confirms it's cancer, it's caught early enough for her to be eligible for the Whipple. I was concerned that her age will prevent her from having Whipple, but you had it when you are older than my mom.

Please keep us update with your recovery.

What should I do? I am about to see another GI doctor in Savannah Ga. Still worried about the cysts? Is there a doctor at Mayo Clinic(Jacksonville Fla.) that specializes on the pancreas

What do I do? Not an answer from GI doctor about to go to another one

Hello- I was diagnosed with stage 2b adenocarcinoma in the head of the pancreas in May 2019 at age 58. PET scan at that time showed no other tumors. I started FOLFIRINOX chemo the next month- and had 12 treatments. After a few weeks off, I had chemo-radiation in Jan 2020. After all of this my tumor had shrunk to less than half its original size. My Whipple was scheduled for March 13,2020 ( the day the world shut down!). I had to have portal vein reconstruction during the Whipple, my pylorus and duodenum were removed at that time also (I had a lot of scar tissue in that area from previous surgeries) , and was in the hospital for 8 days by myself due to COVID. During surgery The cancer also caused me to have insulin dependent DM. In conversations with my doctors I asked about adjuvant chemo- and I did 6 treatments of Gemzar and Xeloda starting in May 2020. At surgery my tumor was re-staged at 1 (at diagnosis was 2b-3 possibly resectable). With the approval of all my doctors, I have been taking very tiny micro doses of cannabis oil concentrate since I was diagnosed. This is high CBD/low THC concentrate that I get legally with my medical card. I truly believe this has helped shrink my tumor along with the chemo and radiation. MMJ also help with nausea and some aches and pain. I realize this may not be an option to a choice for everyone, but I did want to add this info.
I am now almost 4 years out from diagnosis and almost 3 years from Whipple. Yes-I am diabetic. Yes-I have to take Creon. Yes- I am very tired after a busy day. But…I am ALIVE! I get to spend time with my now three grandchildren and last year I raised money and walked in the PANCan Purple Stride Chicago walk to help raise money. It is wonderful to be able to feel that I can participate in somehow giving back to other patients and their families going through this life changing disease.💜 Keep fighting! There is always hope- I have met a 10 year thriver of Stage 4 Pan Can and she is happily taking chemo every 3-4 weeks to be able to spend time with her family. She is my inspiration! I am adding my post-Whipple surgery notes if you want to see the final results.

You are our inspiration!!! God bless you and your positive attitude. You are doing well because of that and the expertise of your doctors. It was very hopeful to hear that you met someone beating stage 4 pan cancer for 10 years. My cousin is doing chemo every 2 weeks and it is almost 2 years for her. She has grandchildren and they are her life. Thank you for posting this
Sincerely Susan