Pancreatic Cancer Group: Introduce yourself and connect with others

Welcome to the Pancreatic Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with pancreatic cancer or caring for someone with pancreatic cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Pull up a chair. Let's start with introductions.

When were you diagnosed with pancreatic cancer? What treatments have you had? How are you doing?

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

When I was first diagnosed I was given morphine for pain. It worked, but it is slow acting and that meant a lot of ups and downs, including at night. My insurance got some reason didn’t cover an oxycodone product so my palliative care team member put me on a low dose fentanyl patch. That was extremely effective and when the time came, I had no trouble getting off by taking one step with even litter dose.

I would ask your PCP or Mayo team for help with pain management. Don’t suffer in silence! And good luck!

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I’ve been diagnosed on Aug 18- through My Chart and have a liver biopsy scheduled for Friday. Called Mayo and they will take me as soon as my results are in. In the meantime, I am having so much pain at night and trouble eating. And high anxiety. Any help is appreciated.

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Just diagnosed by MYChart on Thursday, Aug. 18. Had a brief discussion with PA who ordered the scan and have a liver biopsy scheduled for Friday Aug. 26. I feel my clinic, Park Nicollet has left me flying in the wind. I have questions and no answers. I was a previous patient for knee arthritis at Mayo so I called them. They want the biopsy results as soon a I get them and will slot me in for an exam. I’m exhausted as the pain wakes me up at night. Tylenol mostly helps. Think the pain is related to what I eat and right now nothing is appealing. I need some guidance.

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Profile picture for Debbie @iinvesnu

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

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Hi Debbie, you were asking about enterade? My understanding is that enterade helps alleviate gastrointestinal side effects like diarrhea. Has it helped you?

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Profile picture for Debbie @iinvesnu

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

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@iinvesnu We started using Enterade for my wife after discovering it ourselves. She's been taking it 2x per day for 3 weeks so far. It seems to be helping. Won't know for sure until she gets weighed. We weren't expecting overnight results because her system has been destroyed by 3 years of chemo and bile dumping.

She doesn't like either of the flavors but finds the orange a little easier to take.

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Profile picture for beachdog @beachdog

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.

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We have placed an order for these. I will update on how well she does and if she can drink them. Thank you.

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Profile picture for jqleck @jqleck

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.

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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.

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Profile picture for stageivsurvivor @stageivsurvivor

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.

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Thank you. Taking this to my oncology team. Brenda

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Profile picture for bb21 @bb21

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.

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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.

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Profile picture for stageivsurvivor @stageivsurvivor

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.

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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.

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