Husband had Whipple surgery and chemo: He's uncomfortable

Did oncologist say why? How many Folfirinox cycles have you had? 12 is listed as max for toxicity? And there is a worldwide shortage of platinum so the oxyplatin is short or not available.

So you believe Gemzar was ineffective due to the gene mutation you have?
I have KRAS G12d.
Fulfurinox worked very well for me. Now I am being encouraged to “try” Gemzar but I would much prefer doing what I know worked.

I have frequent CT, MRI scans and ctDNA blood surveillance has been done since I entered the trial in October 2014. I have MRI done for abdomen and a low dose CT for lungs every 6 months. Any evidence of liver tumors is long gone.

For boosting immune system, exercise of walking/bike riding. My N.P. recommended a multivitamin and an additional 50mg Zinc.

Doing more than 12 cycles of Folfirinox is not easy. If someone is below age 70 and of robust physical condition and has been tolerating Folfirinox very well with minimal side effects, oncologists may suggest going beyond 12 cycles. I advocated for aggressive treatment with my oncologist before treatment ever started. The tumor board decided on palliative care with Gemzar. I was never told just how serious my situation was and why the Tumor Board decided on Gemzar. At the three month mark when it became evident Gemzar did not do anything, I looked my oncologist in the eyes and again pointed out my commitment to doing Folfirinox with as much as and as long as my body could tolerate it. I got no resistance to my request. Because it was assumed I would be going well beyond 12 cycles, my oncologist wanted to lessen the chance of developing peripheral neuropathy. This is why he did the dosing starting with six cycles of Folfirinox followed by six cycles of just 5-FU/Leucovorin as resting cycles. Despite only getting 5-FU, I continued to have significant shrinkage which surprised him. I never did Folfiri. I had such a good response on 5-FU alone, that I likely would have had equal or better with Folfiri but at increased side effects to tolerate. I have the BRCA2 mutation and it is known to respond well to oxaliplatin so that is why I ended up getting 24 cycles with it.

Many people are concerned with quality of life and why the oxaliplatin is stopped. My attitude was…you don’t have to worry about quality of life when you are dead from pancreatic cancer. It doesn’t matter . My focus was on surviving and figured if I ended up with permanent peripheral neuropathy, it would be my “new normal” I would adapt and deal with it. I’m a lot more productive being alive than dead. Every day working in a hospital I saw patients that endured horrific accidents yet were thriving and making the best of their “new normal”. They were my inspiration. I realized I didn’t have it so bad. I learned to practice gratitude and had no problems finding something to be grateful for every day which helped me deal with the adversity. I have always been optimistic since early childhood.

I did not have perinural invasion but did have 11/22 lymph nodes positive, and cellular morphology was poorly differentiated and high grade as well as portal vein invasion. The largest tumor that developed in the liver out of six sizable ones was 4.2x3.8cm and on the Hepatobiliary tree which made it inoperable and too risky to use any ablative techniques.

In summary, self advocacy is very important. I learned as much as I could to understand what I was dealing with. I concerned myself with what I could control. What I couldn’t control was the responsibility of my oncologist to deal with. I never sat in the examine room with that “deer-in-the-headlights look. I always engaged and wanted to make it clear I was going to be an active participant in the team effort.

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.

So you believe Gemzar was ineffective due to the gene mutation you have?
I have KRAS G12d.
Fulfurinox worked very well for me. Now I am being encouraged to “try” Gemzar but I would much prefer doing what I know worked.

I have frequent CT, MRI scans and ctDNA blood surveillance has been done since I entered the trial in October 2014. I have MRI done for abdomen and a low dose CT for lungs every 6 months. Any evidence of liver tumors is long gone.

For boosting immune system, exercise of walking/bike riding. My N.P. recommended a multivitamin and an additional 50mg Zinc.

Doing more than 12 cycles of Folfirinox is not easy. If someone is below age 70 and of robust physical condition and has been tolerating Folfirinox very well with minimal side effects, oncologists may suggest going beyond 12 cycles. I advocated for aggressive treatment with my oncologist before treatment ever started. The tumor board decided on palliative care with Gemzar. I was never told just how serious my situation was and why the Tumor Board decided on Gemzar. At the three month mark when it became evident Gemzar did not do anything, I looked my oncologist in the eyes and again pointed out my commitment to doing Folfirinox with as much as and as long as my body could tolerate it. I got no resistance to my request. Because it was assumed I would be going well beyond 12 cycles, my oncologist wanted to lessen the chance of developing peripheral neuropathy. This is why he did the dosing starting with six cycles of Folfirinox followed by six cycles of just 5-FU/Leucovorin as resting cycles. Despite only getting 5-FU, I continued to have significant shrinkage which surprised him. I never did Folfiri. I had such a good response on 5-FU alone, that I likely would have had equal or better with Folfiri but at increased side effects to tolerate. I have the BRCA2 mutation and it is known to respond well to oxaliplatin so that is why I ended up getting 24 cycles with it.

Many people are concerned with quality of life and why the oxaliplatin is stopped. My attitude was…you don’t have to worry about quality of life when you are dead from pancreatic cancer. It doesn’t matter . My focus was on surviving and figured if I ended up with permanent peripheral neuropathy, it would be my “new normal” I would adapt and deal with it. I’m a lot more productive being alive than dead. Every day working in a hospital I saw patients that endured horrific accidents yet were thriving and making the best of their “new normal”. They were my inspiration. I realized I didn’t have it so bad. I learned to practice gratitude and had no problems finding something to be grateful for every day which helped me deal with the adversity. I have always been optimistic since early childhood.

I did not have perinural invasion but did have 11/22 lymph nodes positive, and cellular morphology was poorly differentiated and high grade as well as portal vein invasion. The largest tumor that developed in the liver out of six sizable ones was 4.2x3.8cm and on the Hepatobiliary tree which made it inoperable and too risky to use any ablative techniques.

In summary, self advocacy is very important. I learned as much as I could to understand what I was dealing with. I concerned myself with what I could control. What I couldn’t control was the responsibility of my oncologist to deal with. I never sat in the examine room with that “deer-in-the-headlights look. I always engaged and wanted to make it clear I was going to be an active participant in the team effort.

@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?

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.

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 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🙏