Abdominal pain with Folfirinox

Some people do experience significant abdominal pain for a few days after FOLFIRINOX, especially while the 5-FU pump is running or shortly after it is disconnected.

There can be several causes, including intestinal cramping, constipation, diarrhea, gas, or irritation from the chemotherapy itself. In some cases, medications given with treatment—such as steroids or anti-nausea drugs—can also contribute.

It’s important to let his oncology team know, especially if the pain is severe. They may want to check for constipation, pancreatitis, ulcers, or other causes, and they may be able to adjust his medications or prescribe something to help with cramping.

He definitely isn’t the only one to experience this, and there are often ways to make treatment more tolerable.

Thanks so much for this info & support! I will definitely follow up with the oncology team.

Have you connected with PanCAN? They provide a wealth of educational information, including tips pre-and post surgery. It’s a wonderful resource for info, and has a free “know your tumor” program: hospital obtains sample of your biopsy to be sent to Texas for biomarkers, which is very helpful (many docs don’t even consider the importance) to determine course of treatment:(

Targeted chemo is WAY behind where it should have been by now, like 3 decades behind, and there are various reasons why the populace has been kept in the dark. Chemo will “soon” (NOT soon enough) be replaced by better options currently in trials, that are actually rational. FDA is a joke.

On PanCAN, there are survivors (like here) who help others find solutions, share their stories, and the org deals strictly with pancreatic cancer. If you call PanCAN, you can be assigned “a case manager” at no cost. These people are dedicated, informed, and VERY helpful, but do not give medical advice as they are not medical professionals. They are; however, “in the know” which counts equally imo regarding various ways to speed up healing, provide local resources per zip code, ways to achieve eating goals etc. The case workers will email you lists of trials (same day you call) and send a list top facilities in your area to contact if needed.

There is also a wealth of dietary info provided by FoodRevolution.org. They have an annual free summit each April; I stumbled upon it by accident. Various medical docs who know full well about the dietary connection to illnesses, the “informed docs” as I’ve learned, regarding best diets for diabetes, cancer and various diseases, and how our bodies can function optimally. The cancer episode was an eye-opener. This org is still allowing free access for 2 of their 8 nights of topics if interested. I found it to be incredibly helpful in gaining knowledge about post-op
food choices, and pre-op choices. A wealth of knowledge gained regarding the importance of microbiology of our gut. Incredible info proving it’s better to have a wide variety of vegetables to create a most diverse microbiome. The “powerhouse” being the gut.

Everyone who’s had a Whipple benefits from having a knowledgeable dietitian as part of their aftercare. I’ve also found that researching over the Internet for legitimate sources is extremely beneficial for best outcomes.

The chances of becoming diabetic post-op and/or relying on digestive enzyme
supplements with every meal
are known, but DEFINITELY not a given with proper food choices that don’t over-challenge a partial pancreas. It takes persistence and not giving in to say, a 16 ounce steak each week.

Yes. It’s an individual choice regarding continuing to eat animal fat (RDA 20% daily diet with no mention of beneficial plant fats), selecting veggies that are equal in nutritional value and for needed fat and protein intake.

Sadly, many uninformed docs tell their patients to eat whatever they want. Good grief. “Just take more Creon” they advise. Well, whatever works for each individual will be known quite quickly. I fully support each individual to make his or her own choice, assuming they’re an adult and they’ve taken the time to become educated about the disease.

Some, post-Whipple, decide to take extra Creon prior to eating steak in order to even begin to digest it. It’s their right to choose. I’m picturing, however, an angry pancreas to in that scenario, and planning to try to keep what remains of my pancreas “happy” i.e. functioning. Time will tell.

Post-Whipple with limited enzymes being part of the deal as both digestive and insulin produced by pancreas, learning from success stories shared by others is key.

I wish you the best possible outcome. If you have any questions about specific foods, if I can help, please ask or I will guide you to sources that are valid.

@chuff333
Thanks so very much for taking the time to share all this info! I will definitely check this all out! I have been a nurse for 42 years and love the knowledge of how the right nutrition makes the body work better in balance. I like to incorporate this knowledge into my personal life as well. My husband has been on board with preventive measures as his family has a lot of health problems and he has inherited a few. Thanks again for helping us!

@mcharlesfrancis gave me bad colitis.

In my case, I had intense stabbing pain, both abdominally and in my shoulder, during my course of Fulfirinox treatments. However, this was deemed by my oncologist as associated with the cancer interacting with nerves and not directly associated with the chemo.

@alanbeavfan
Thanks for sharing Alan. My husband's oncologist thinks it's the chemo irritation of stomach cells. We're trying extra IV hydration & steroids.

@alanbeavfan

Many people have reported increased pain associated with that overkill combo. So Sorry to hear it.

I can identify with your pain as I’m one week out from Whipple preformed at by high-volume surgeon (he does 2 a day many days, unbelievable really).

Hospital sent me home with ineffective pain management. Relatedly, the week I was there my post-op
pain was never managed. Their top concern is not risking patients becoming opioid addicts, even when patients are experiencing horrendous levels of pain, have never used an illicit drug in his or her life, and continued to relay an 8+ rating when asked about pain level. IV Advil, Toradol. Definitely didn’t cut it.It is like someone who’se had their arm cut off with a butter knife, and they say here you go. Here’s a Band-Aid. You should be fine now.

Please note that I’m not attempting to give you medical advice to tell you to get off of any chemo that your doctor has prescribed! I apologize for my negativity and grumpiness due to unmanaged pain, and blaming inept “specialists” for not helping manage it, even though I was basically begging surgeon’s assistant for it the in the hospital. After a couple of days, she finally decided to up Dilaudid from .25 (which for me was not even close to being adequate post-Whipple) to .5.

Become as informed AS POSSIBLE utilizing information put out by high PubMed studies and sources outside of the US.

There is absolute deception, occurring in even high-volume hospitals regarding giving patient correct information. There have been a few studies about this topic, but they need to have many more.

I’m mind-boggled so many “top experts” in chemo and Whipple surgeons, continue to follow outdated practices by 30 years regarding chemotherapy, particularly with respect to ADPC.

There are honest doctors in the mix, thankfully, who know the value of trials and state they are WAY more valuable to better outcomes compared to chemotherapy when it comes to pancreatic cancer. There aren’t enough trials and then there’s the problem not enough people enrolled in the trials.

Quite frankly, chemotherapy shouldn’t even be a thing in 2026. Sadly it is, and is continued to be pushed as “the best option” by chem docs and surgeons. That is not truthful.

Allowing poison to be administered via IV targets all cells, particularly fast dividing cells. Targeted therapy should’ve been released to the public 20 years ago, or more.

I’m emotionally negative currently due mostly to effective pain meds given by the hospital. I’ve had to double up myself after reading that it’s safe to do so.

I wish you the best and I hope to send a much more uplifting response. When I catch another post, you might make, this is just not the day for that I’m afraid. Take good care.

I had the same chemotherapy and same side effects that almost killed me. Did not help me with the cancer. Tell your oncologist to change the treatment

IMO, it’s deception to tell a person with pancreatic cancer, the “best treatment option is FOLFIRNOX” when that is certainly not the truth.

Consumer demand folks. As long as hospitals and clinics continue to get customers to go along with what they say is, “tried and true traditional
chemo”, studies will remain far and few between for successful targeting.

The medical system promoting FOLFIRINOX for ADPC not only fails patients (they are aware of the stats), yet verbally so many deny it.

Fortunately, effective treatments are on the horizon providing superior options/ better outcomes, due to consumer demand and a minority of ethical scientists and researchers working behind the scenes.