Pancreatic Cancer Group: Introduce yourself and connect with others

Whichever chemo regimen he gets, plan on being flexible with your plans. Reactions to chemo are all over the map; some people keep working. For others it's much more debilitating. Be prepared for a marathon then if it's less taxing you'll be relieved. Good luck and God bless.

This sounds like a perfect approach. Thank you.

My husband was diagnosed with Ampulary cancer and had tge Whipple procedure at the end of March. He also has cirrhosis so his chemo is delayed. I would like to be in touch with other caregivers dealing with this vicious disease.

My name is John. My dearest of 37 years received a diagnosis of Pancreatic adenocarcinoma. It was determined that there is a heterogeneously hypoechoic 35 x 32 x 32 mm mass in the body and tail of the pancreas. After confirmation and biopsy it was confirmed. This was found during a routine scan where they "saw something" that needed further investigation. PETCT found no other cancer in her body. The follow was recommended and started, 12 rounds of chemo. This is to be followed by surgery to remove the tumor, tail and spleen. I have been reading that 12 rounds of Oxaliplatin and 5FU may not be required...our Oncologist is persistent that 12 is the standard course. After 4 rounds my concern is that my wife will withdraw from treatment. It is working...her pain is gone, she no longer takes any pain meds. Also, the CA 19-9 is 80 (after 3 rounds of Oxaliplatin and 5FU) down from 2291. My question remains...is 6 rounds sufficient for Oxaliplatin, and continued 5FU? If you know of any studies for research on this subject please share that with me. Thank you.

Where is she receiving treatment? The "gold standard" might be 12 but every patient is different. My wife was told 12 treatments then surgery but scans showed that the tumor became resectable after 9 so she had surgery after 9. You need a dr./team that is totally up to date and don't just go by-the-book.
Oxalyplaten is a very rough treatment with lifetime maximum dosing and the side effects are cumulative and long lasting so keep after her team and don't let them cookie cutter the treatment. Good luck.

She is being seen at Oncology / Hematology Fredericksburg VA. The Surgical team is lead by a Dr that has been doing these procedures for 20 years, he has taught as well. The Oncologist did order a CT early based on her pain being completely gone, thinking the tumor has reduced and no longer large enough to press on the plexus. Also influencing the scan being ordered now is the marker number dropping so fast. Initial finding found the tumor did not invade any veins or arteries. My hope is for the surgical determination to prevail at 5 or 6 rounds of chemo. My wife is a small woman and she is loosing so much weight and quickly. She no longer can tolerate Kate Farms meal replacement drinks or much of any food at all. As I stated my biggest concern is she simply gives up and refuses any further treatment. She has another round (5th) next Monday. Then the CT the following week. Based upon the rate / speed in the reduction of CA 19-9 seeing it near the single digits is possible. Thank you for your interest and time to comment.

every patient is different. I never was told about the 12 session gold standard. My platelets starting giving issues after 4 chemo sessions and even with skipping a week did not recover well. Now my CA19-9 was 330 at beginning of treatment. But after a CT, they decided to move on to the Whipple surgery. I really wish I had the surgery first and then chemo but I know the tumor did reduce in size...it was still larger than CT revealed just before surgery. All went well. I had a spinal block and pushed myself to walk ASAP. I got to eat ice for the first 24 hrs and then Jello by the second day...just a little. It all helped my mental status and supported my drive to heal. I went home after 5 days instead of 8. Still had a lot to regain, but for me so much better to do at home. Work as a part of your team and make good choices forward...ASK questions.

Thank you and you are correct!🙏

Has anyone heard of or tried Enterade? The chemo drink?

Coming from a background in cancer, immunology and cancer stem cell research, a ten year survivor of stage IV pancreatic cancer and serving as a mentor to many pancreatic cancer patients, I’ve been asked a number of times why 12 cycles is the “magic” number.

As a researcher, I expected there was either an animal or human study done. After an extensive search, I asked three of the most experienced oncologists that played a role in the Folfirinox being FDA approved or the clinical studies showing superiority over other treatments. The three oncologists with the most experience with Folfirinox are William Isacoff (now retired from UCLA), Daniel VonHoff (retired from Honor Health in Phoenix) and Thierry Conroy in Nancy, France who is still an active clinician. No one could give me a clear answer and it seemed to be based on an “average” patient being able to handle that much without significant peripheral neuropathy and provide therapeutic value in treating systemic disease.

As a researcher with an understanding of cancer biology and the concepts of NED and MRD, my goal was in surviving the disease first. With stage IV disease and the desire to survive-buying extra time was not an option. It was do or die so I did. And not only did I do 12 cycles of the original formulation that is 20% higher than today’s (m)Folfirinox, I did 24 cycles over a two year period interspersed with 5-FU+Leucovorin as resting cycles. It was done in groups of six. Oncologists like to have their patients try to make it to eight cycles as it is felt more benefit is gained if that point can be reached. For patients having a hard time dealing with standard treatment, there is a method known as metronomic dosing. It has been around for more than 20 years and Dr. William Isacoff is a proponent. It can be hard to find oncologists who use the technique but they are around. With metronomic dosing, small amounts of the chemo are used but given more frequently. While still toxic to malignant cells, the effects on healthy cells are minimized. Here are some links with more detail of the technique-

Metronomic Dosing

LetsWinPC.org ran a feature story about metronomic dosing a few years ago and a search will provide the link. The National Library of Medicine at the NIH is the source of two studies on the technique. Because I am posting for the first time, the site will not permit me to provide the links.

Chemo can be grueling but I was determined to have some good come out of a bad situation. I had to toughen myself emotionally, mentally and physically to get through it. I refused to let the cancer define me and I went about my daily life as normal as possible.

I had an excellent response to the treatment and during that time I was genetically tested leading to uncovering a mutation that was driving my cancer. After completing the “gold standard” chemo, I entered the clinical trial. Years later members of my care team shared something they dared not say when I was under treatment nor did I ask or want to know-how long did they expect me to survive at the point I started chemo. I was told not more than one year. Ten years later I give some of the credit to sticking it out on Folfirinox to reduce the tumor burden and then using the clinical trial drug as long-term maintenance therapy that I have been taking for the last 7 years and 8 months. I have been N.E.D. since April 2016.