Pancreatic Cancer Group: Introduce yourself and connect with others

@stageivsurvivor - What was your immediate, post Whipple chemo treatment 12 years ago? What was/is your monotherapy that followed?

Given your professional work history and as a current volunteer for patient advocacy, what are your thoughts on this 2022 journal article by Okuna, et. al., titled "Berberine Overcomes Gemcitabine-Associated Chemoresistance...." ? Any advice?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9611392/
I am a 75 year-old male diagnosed with Pancreatic Adenocarcinoma nearly 1 year ago with a 3.5 cm malignant tumor at the head of my pancreas. Pre-adjuvant treatment at the Mayo Clinic included Folfirinox (discontinued after 4 cycles due to allergic reaction to Oxaliplatin), switch to Gemcitabine/Abraxane for 2 months, followed by 3 weeks of radiation treatment with reduced dose Gemcitabine. Anticipated Whipple surgery in January of this year was postponed due to elevated CA19.9 levels, as well as in February for the same reason. Two months treatment with Folfiri followed in March and April, but CA19.9 levels continued to rise and several small lesions of less than 1cm appeared on the liver in late April imaging. Given liver mets and rising CA19.9 levels, Whipple surgery is no longer an option and prognosis is poor (life expectancy 4-6 months). (Note that tumor size per several CT scans and metabolic activity of tumor per several PET scans has been relatively constant during past 11 months.) I was half heartedly offered renewed treatment with Gemcitabine/Abraxane as the only chemo treatment, but it was ineffective in the past as CA19.9 levels rose while receiving a couple of cycles of it in September-October of last year. I am currently exploring alternative/integrative treatment options and my wife came across the article cited above, thus, my question above regarding the article and the possibility of renewing Gemcitabine chemo treatment with Berberine added.

Thanks in advance for any comments you may have.... and thanks also for your longstanding and ongoing engagement on Mayo Connect. Your informed commentary has been helpful and valued by me and others.

Of course, if anyone else cares to weigh in, please do so. Thank you all.

Warren in Alaska

I had a Whipple 12 years ago for a diagnosis of high grade, poorly differentiated pancreatic cancer with portal vein involvement. I wouldn’t say it was awful but it was challenging and got through it to where I feel as good as before onset of illness. It was a new experience and I found ways to successfully deal with the challenges.

I am retired from a 40+ year career in clinical cancer, immunology and stem cell research and began my career as a medical technologist. I am very active as a research patient advocate on the GI Cancers Committee of the Eastern Comprehensive Oncology Group (ECOG-ACRIN), American Society of Clinical Oncology (ASCO) and the Hematology/Oncology Pharmacy Association. I am also a 12 year survivor of stage IV metastatic to the liver that was imaged a week after the Whipple.

Back in 2012, the resolution of a CT was less than today. Being diagnosed and quickly having a Whipple, the metastatic disease was below the detection threshold of a CT at that time and how I ended up having the procedure as a stage IV patient. Aggressive chemo and the detection of a gene mutation from genetic testing led to targeted therapy for maintenance monotherapy.

in my case, genetic testing showed i was at elevated risk of pancreatic cancer because of an ATM gene mutation. i was advised to follow up regularly with a genetics GI specialist for a high risk protocol aimed at maximizing early detection

Hi
My 88 year old dad has been diagnosed with pancreatic cancer. He had jaundice and that’s what led to a series of tests that revealed the cancer. He’s been healthy and active all hi life but doctors recommendation now is to avoid any harsh treatment (because he’s too weak to take it) and just best manage his symptoms. He has extreme fatigue and needs assistance for everything and has swelling in his legs due to the jaundice. Any advice on symptom management techniques or drugs would be much appreciated

My name is Elisabeth. In 2021, i was incidentally diagnosed as having an ATM gene mutation that placed me at high risk of pancreatic, ovarian and breast cancer. Tbe genetics GI dr i initially saw thought i was at relatively low risk of pancreatic cancer (no family history). In Dec 2023, i had a baseline pancreatic abdominal MRI which showed pancreatic cysts. The pancreatic oncology surgeon i subsequently saw has identified my diagnosis as malignant neoplasms and is monitoring them w regular MRIs. i have just made an appt at Mayo because i want to see a top pancreatic specialist in a world class pancreatic clinic

Thanks,

@steffi2 Sorry to hear about your diagnosis, but welcome to our club. I hope/recommend they order germline and somatic DNA tests as well as CA19-9 for you before they start any treatment. The genetic results may take longer to get back than you can wait before beginning treatment, but the results can at least help understand if you're on an appropriate treatment plan or not (or what the next step might be).

The Whipple was not easy, but I wouldn't call it awful. Recovery from and recurrence after Whipple (including 1.5 years of extra chemo) were easier for me physically/medically than they were psychologically. I'm still a very healthy Stage-IV 61 year old working full time. (And disclaimer -- I have zero medical training.)

But even the "venerated" Whipple (assuming your tumor is in/near the head of the pancreas) might not be right for you. You might consider total pancreatectomy for reasons discussed in https://pubmed.ncbi.nlm.nih.gov/27215900/

You might also find that one of the "cancer vaccine" classes of treatment are appropriate, but that starting chemo first could disqualify you from relevant trials.

Everyone is different, but the "Standard of Care" treatments tend to produce "standard" results. If you have access to a pancreatic cancer center of excellence (e.g., Mayo, MD Anderson, Johns Hopkins, NY Langone) I would suggest you try to book an appointment there immediately.

Also, get all the imaging you can (PET, CT, MR) with pancreas-specific protocols at the best centers with the best equipment and best radiologists you can. You need a really good baseline to make the best treatment decisions.

Regarding surgery, there is a lot of debate about whether neoadjuvant chemo is appropriate/necessary (and if so, how much). Good discussions on each side from prominent doctors (Vandy and MDACC) here:

Regardless of any pre-surgical treatment you receive (even if "Total Neoadjuvant Therapy"), I would recommend supplementing that with adjuvant therapy and VERY frequent, detailed monitoring (more CA19-9 tests, ctDNA tests, imaging) as the PDAC beast has a very sneaky tendency to come back. The intra-operative and post-op pathology can miss malignant cells or simply not contain malignant cells despite them being elsewhere in your body. Early detection and treatment provides the best chance for a positive outcome.

I wish all the best for you, and hope you can share anything you learn or anything you need with us here.

Retired MD here. Hello to all you brave souls. My journey began 3 days ago when I went to the emergency room with pain, abdominal mass and jaundice. The surgeon was sure it was pancreatic adenocarcinoma the first time I saw her. Biopsy yesterday via endoscopy preliminary results showed malignancy. Waiting for treatment plan. Hoping I will be eligible for Whipple although I know it will be awful.

hey, can anyone tell me the difference betweenCa19 testing ca125 testing and cea?
Thanks.
Son in law 4 yrs post pancreatic cancer, bit ca 19 not very elevated thruout.

suelan,

Are you being treated at a pancan center of excellence?