Husband had Whipple surgery and chemo: He's uncomfortable

@stageivsurvivor did you keep having which scan until NED was declared? What is best way to boost immune system? And today, will oncologists prescribe more than 12 Floforinox cycles or do they stop? Do you know if Flofori is as effective? I see people getting Folfori - not sure if that’s because of a shortage or the neuropathy factor of the oxiplatin, thoughts? And had your metastatic disease affected lymph nodes or had perineural invasion?

The number of rounds for Folfirinox being 12 is based on a committee of pancreatic oncologists through consensus that it was the maximum number of cycles the majority of patients could tolerate regarding side effects (nausea, vomiting, peripheral neuropathy, cold sensitivity) and achieve NED (No Evidence of Disease). That information comes from two of the pioneering oncologists that conducted clinical trials of Folfirinox.

The definition of NED is knocking down the disease so low that it can not be detected by conventional imaging by CT, MRI or PET. There can be micro-metastatic disease with is too small to be detected and is referred to as MRD (minimal residual disease). It can be micro lesions or circulating tumor cells. As long as one’s immune system remains robust, the MRD is held in check. If the immune system is challenged and weakens, disease progression results. Pancreatic cancer is noted for a high rate of disease progression after Whipple resection, even in some diagnosed with stage I disease.

I ended up having stage IV disease after my Whipple and did far beyond the 12 recommended cycles. I was keenly aware of MRD and was focused on completely eliminating it. Fortunately I tolerated a higher dose of Folfirinox (unmodified version used between 2011-2018). I achieved NED after 24 cycles of Folfirinox and at year 10 was informed I am considered cured of any metastatic disease. I just reached 11 years post Whipple.

I’m sorry that I don’t know the answers to many of your questions. I also had an infection on my incision after leaving the hospital. They had to re-open a 2 inch section. It took five weeks to heal. We packed it with a special gauze that was treated with an iodine solution. That healed once I started eating more protein. We packed it once per day. I would reach out to your oncologist and inquire about the timeframe of chemotherapy Post Whipple. I disconnected from the pump yesterday and I feel like dirt today. I’ve never been this nauseous before in my life. I called the hospital to see if I can get some Zofran. Hopefully that will help - I don’t know. We have to be our own advocates. This is a hard road. I’m 57 and my dad went through this at 67. Unfortunately, he only lived one year after the Whipple. Even though I know, there are a lot of people that care about me and what’s going on, when we’re going through it, we are alone. No one else can feel this pain physically or mentally. We have to control what we can control. Stay strong.

Hi @stephenkogler is the chemo after the Whipple full strength (pre-surgery) concentrations? After Whipple I got an infection (thought to be from ERCP stent replacements) and my surgical incision has not healed yet; therefore, no post surgery chemo. Is there a window when Chemo must be administered to be effective post surgery? I have same lymph node count as positive as you; bile duct cancer and cancer on head of pancreas so I had Whipple on 3/14/23. Eight Floforinox sessions of chemotherapy before surgery too.

It was eight weeks. Week one was in the hospital. Week two was at home and I felt the hospital released me a day or two early. As you can imagine, the week at home was hard, but the next week was harder because of my withdrawal symptoms from the narcotics. My experience was that Tylenol and Advil and combination work better than OXY. It took me about two weeks before I could walk an hour a day and even now I can only do 20 minutes on some days. It’s a process. I was able to hit a few golf balls last week but was fatigued quite quickly.

I too am curious as to what determines the number of rounds needed. My husband had Whipple surgery for Stage 1B with clear lymph nodes before starting Chemo. He is scheduled for 12 rounds of Folfirinox and will be having #6 next week. Each one is awful. Not sure why so many rounds are needed. My heart breaks for him at each treatment. Wishing everyone better outcomes🙏

I have also found the oncology nurses to be angels. They see us in our pain moments more, it seems, than the doctors do.
How soon were you able to begin chemo after your whipple?

I feel your husband’s pain. I’ve been treated at Johns Hopkins Hospital in Baltimore, Maryland. Diagnosed with pancreatic cancer in October 2022. The recommendation was for eight rounds a Folfirinox. When in fact, they did nine prior to the Whipple surgery and then they would continue the Folfirinox for four sessions. After surgery. I had the Whipple on April 24 and the cancer is stage two because 2 of the 14 lymph nodes were cancerous. I just had my 10th chemo yesterday and I’m sorry to say that it was the absolute hardest of all. The Irinotecan just about killed me. And that was even with two shots of Atropeen at the infusion center. Each of our journeys is so different. We have to be our own advocate, so even though our doctors are busy, we should be asking them for help when needed and I found it. It might take 48 hours to get an answer but most doctors I have found a JHH I’ve been quite empathetic extremely helpful. Good luck. We are all in this together, including those of you that are our wonderful caregivers at home.

Thanks for the follow up. My assumption was as you suggest, the number of chemo treatments is based on results of the scans and how the chemo is affecting the size and vascular entanglement with the tumor. My CT-Angiogram of two weeks ago showed a 3.1 cm diameter mass at the head of the pancreas (adenocarcinoma) and some limited involvement with the SMV (superior mesenteric vein). My second round of chemo is next week, so I'm about 6 weeks behind you. Sounds like we are in relatively good shape compared to many who find themselves with an unanticipated pancreatic cancer curve ball late in life. Also like you, I was diagnosed and initially treated at the Mayo Clinic in Rochester. This old guy (74) returned home to Alaska last week for the chemo to follow this summer, but I'll return to Rochester for radiation therapy if needed, and the Whipple procedure as well. May you (we) fare well in the months ahead. As for the Mayo Clinic.... I've run out of superlatives to describe the quality of care, teamwork and professionalism by everyone I encountered there.

I believe the results from the CT and PET scans every 2 months dictate the therapy that is needed as well as the surgeon who will be doing the Whipple surgery.