Pancreatic Cancer Group: Introduce yourself and connect with others

My husband has been diagnosed w/ pancreatic cancer in the last couple of weeks and is going through staging now, and is getting a port installed for the anticipated chemo. It's weird to have plans for the summer not knowing if we'll be able to proceed, but he does not want to tell anyone about it. That may change after this staging is finished and he proceeds to whatever is next. We're in our mid-70s. Just taking things one day at a time. A bit tiring, though, dancing around the gorilla in the middle of our lives. 😳
I have already learned a lot from reading these posts and offer my thanks to those who share their experience so generously. 💕

We are in a similar situation but my husband has had the Whipple procedure and is recovering. What surprised me most is the exhaustion he suffers daily. Are you satisfied with the’care team’ you have?

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.

Remarkable and so happy for you. Thanks for providing so much detail. Was your original cancer contained to the pancreas or was there any spread at that time?

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.

This is wonderful and so glad for you. did you experience issues with platelets and/or Neutrophils? Do you think the metronomic dosing helps with these issues. I had no major side effects except the cell counts. 5FU gave me no issues either. Thanks for your comments.

When I was on standard Folfirinox from 2012-2014, I only required one administration of Neulasta to raise my WBC count. The 14 day Administration cycle of FFX was never impacted. My platelet counts fluctuated but never low enough to postpone chemo.

Normal rapidly dividing cells although affected by chemo are not impacted to the same degree as malignant cells. My reducing dosage and administering more frequently, the healthy rapidly dividing cell tropes are more robust while the malignant rapidly dividing cells are still sensitive to the toxicity of the drug.

It is interesting that using an antibiotic is more like the metronomic approach.You don’t get blasted with a massive bolus of an antibiotic. They use the Mean Inhibitory Concentration approach where you get a concentration of the minimum amount plus a little extra to be on the safe side to be bacterialcidal against the bacterial strain and at certain time points over the course of 1-2 weeks. Metronomic dosing is similar in this respect-enough of a concentration to kill malignant cells with less impact on healthy cells and easier on the patient.

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.

My wife is also small and lost weight rapidly after surgery. She couldn't tolerate any of the recommended protein drinks because the folfirinox had altered her sense of taste and smell and just putting those products near her made her sick. We just discovered a product called Enterade which is designed to heal the digestive system and hopefully allow better absorption and nutrition. I'd suggest getting your wife on this quickly to see if you can avert further weight loss. My wife has been in treatment, chemo and surgery for 3 years and her digestive system has started to respond to the Enterade now in the 3rd week taking it 2x per day. You want her weight up before the surgery. Good luck.

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