He starts chemo: Now what do I expect?

Folfirinox is the current “gold standard” in first-line treatment for pancreatic cancer. The pump that is taken home does a slow infusion of 5-Fluorouricil (5-FU) over 46 hours. The first chemo agent administered after pre-meds is Oxaliplatin (brand name Eloxatin). Besides it’s own cytotoxic effects to malignant cells, it acts as a sensitizer and enhances the killing effects of Irinotecan and the 5-FU.

The side effects of Oxaliplatin are cumulative and continue to become more intense for a few months after chemo is completed. I advocated to do more than 12 cycles because I was being treated for metastatic disease and minimal residual disease is a significant concern should one achieve the goal of “No Evidence of Disease” (NED). Permanent peripheral nerve damage would have occurred taking 24 cycles if administered continuously. Even at 12 continuous cycles, neuropathy can be permanent or last a considerable amount of time. In 2012 when I began treatment, my oncologist took permanent neuropathy into consideration because of doing more aggressive chemo as a curative goal.I would get six cycles of Folfirinox over 3 months every 15th day when a new cycle began and then it was alternated with six cycles of 5-FU/Leucovorin to allow my body to recover- especially the peripheral nerves. Although I experienced neuropathy, it was not permanent although the feet took many years to fully resolve.

Since my treatment that ended in 2014 having been very successful, a technique called “cold therapy” was first used by patients with colon cancer as oxaliplatin is also used in that setting. By using chilled gel-lined gloves and booties for hands and feet worn 5-10 minutes before infusion of oxaliplatin, it constricts the capillaries and prevents concentrated drug to reach peripheral nerves of the hands/fingers, feet and toes, thus preventing damage. Holding ice chips in the mouth serves the same purpose and prevents cold sensitivity when eating cold food and drinking chilled beverages.

In my role as a patient research advocate I attend many pancreatic cancer meetings in person and via teleconference. I have a lot of contact with leading pancreatic cancer oncologists and their N.P.’s. They are becoming receptive to the benefits of cold therapy and how it provides for a better patient experience, improves quality of life and helps patients at least tolerate the standard of care 12 cycles. The anecdotal observations on its effectiveness led to a phase II trial that was very successful. A phase III trial with a very large cohort is currently in progress. Major high-volume pancreatic cancer centers have recognized the benefits of cold therapy such as MSKCC and Medical College of Wisconsin/Froedert Hospital.

Below are a number of links describing the purpose of the technique and how it is administered. It is best started at the initial treatment cycle before any neuropathic damage to nerves occurs. I wish it was available to me 11 years ago. I would have done it in a heartbeat. Neuropathy was no fun when I experienced it.

NEUROPATHY PREVENTION WHEN TAKING FOLFIRINOX/ICING

LetsWinPC.org feature story on cold therapy
https://letswinpc.org/disease-management/ice-prevent-neuropathy/
https://www.uspharmacist.com/article/ice-chips-prevent-hyperalgesia-with-oxaliplatin
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/
https://learn.colontown.org/topic/managing-neuropathy-and-cold-sensitivity/
https://ascopubs.org/doi/abs/10.1200/JCO.2020.38.15_suppl.e16140
https://paltown.org/icing/
https://letswinpc.org/research/more-research-needed-for-neuropathy/
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-q-and-a-cold-cap-therapy-can-reduce-hair-loss-caused-by-chemotherapy/

My husband is starting chemo on Tuesday and I am wondering about the peripheral neuropathy. What exactly is peripheral neuropathy? The oncologist mentioned it could be pins and needles in the hands and/or feet. But is it anything else? She had indicated that for people who had spinal issues it could be affecting a patient's back. And I was just wondering in what way? Is it nerve pain? I'm so anxious about this next step and how it will affect him. I know everyone is different. I have some questions to go in with on Tuesday thanks to this forum - I'm particularly interested in the icing. I was also wondering if anyone finds regular compression socks helpful for the treatment since it's such a lengthy time in the infusion chair?
Thank you in advance for any help.

I'm a poor candidate to reply about icing, as my first oncologist strongly advised against icing. So I'll leave it to others to talk about that. I didn't try it.

Peripheral neuropathy is pain, tingling, numbness and weakness in distant body structures, such as fingers and toes. I've had 8 chemo rounds since late April (that includes a 6-week layoff due to a gallbladder attack and surgery--long story). My neuropathy has been cumulative, worse with each cycle, but all in all not bad. I may not be typical, so please don't take that as applying to every patient. My neuropathy is worst for a few days after chemo and then dissipates, so far at least. It hits in my throat, tongue and fingers; I haven't had any in my toes or feet. It's cold sensitive but isn't present all the time. For example, right now while I'm typing, I'm fine--I don't feel any tingling. If I go into the fridge to get something, the neuropathy will spark because of the cold. I use potholders to retrieve things from the fridge and freezer, and I avoid cold drinks for several days, although I've discovered I can drink cold Diet Coke from the fridge. (What is up with that??) During the 6-week layoff, it almost completely resolved.

Re compression socks, personally I would be unable to bear those. I had to wear them after my hospitalization in fall 2020, and I can't stand how tight they are. Your husband should be able to get up and walk during the infusion; you just unplug the IV machine and wheel it along with you. Moving around would help minimize swelling. Also, in my clinic, the infusion chairs are recliners, so patients can elevate their feet, which would help as well.

Think of "peripheral neuropathy" as neuropathy at your outer periphery -- the farthest places from your heart (fingertips and toes) where blood flow sort of reaches a dead and and has to change directions. In particular, the term you're most interested in is "CIPN" (Chemotherapy-Induced Peripheral Neuropathy), which may vary from patient to patient and drug to drug. In my case, Folfirinox before Whipple surgery and Gemzar + Abraxane + Cisplatin after surgery have been about the same, but it was the Oxaliplatin (ingredient of Folfirinox) that gave me the hypersensitivy to cold.

I've found the worst part of my compression socks at chemo is simply putting them on. But once they're on, I can still walk my dance partner (the chemo pump pole) to the bathroom and back without too much trouble.

Since I also use a rather bulky pair of ice/compression boots over them, the socks insulate my feet a little bit from the direct cold of the boots. I try to get as much time out of the ice boots as I can before a bathroom trip, because I can't walk down the hall in them. They're too bulky to be worth putting on a second time, and have usually warmed up by then anyway. I just slide my compression-socked feet back into a pair of loafers for any more trips down the hall.

Regarding the study about icing and compression I linked to earlier, that study cited this one https://pubmed.ncbi.nlm.nih.gov/27620884/ about compression. In particular, their compression gloves were nothing special: They simply had the patient wear two surgical gloves (each one size too small) stacked on top of each other.