Pancreatic Cancer Group: Introduce yourself and connect with others

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.

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.

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.

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?

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. 💕

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.

Of course you are scared. I had my stage four diagnosis in March and I am also scared. But by getting a second opinion and researching clinical trials and reading as much as possible I have made it my job to understand and beat this cancer I have a much better attitude now. You have to be involved in your own health plan.