He starts chemo: Now what do I expect?

Fwiw, chemo didn't exacerbate my anxiety or my mild to moderate depression. (It's circumstantial depression, and I don't take any Rx or OTC for it; I do occasionally take a low dose of an anti-anxiety drug, generic Ativan, at bedtime.)

This might not be relevant to your friend's circs; please consider asking the chemo nurses as well as your friend's oncologist.

Fwiw, I had almost no experience of metallic taste (just a ittle, on infusion day), and no problems with neuropathy. Keep in mind that everyone is different.

I had a lot of nausea, diarrhea, and gas. And, my tastebuds were altered -- I wanted bland foods (mashed potatoes, plain chicken, a carrots-peas-corn blend). My last chemo was on 8-2-23, and my taste buds are about 10% back to what they were before chemo.

Oh, and hair loss ... I've lost about 50% of my hair. It's a little noticeable at the front / on my crown, but not too bad.

Hi. I felt overwhelmed beforehand, too, so let me echo what others have said: Chemo is manageable. Not great, but definitely manageable. It's cumulative, so he will feel it more intensely, and the side effects can last longer, as chemo progresses (it was more intense for me after the 6th, 7th, and 8th infusions).

I got Folfirinox -- three drugs at the infusion center over 3.5-4 hours (oxaliplatin + leucovorin, which took 2 hours together, then irinotecan, which took 1.5 hours), then the pump (fluorouracil, also knows as 5FU) for 46 hours at home. The pump was *much* easier to deal with than I thought it would be. I was very worried about it, but it wasn't that bad.

I bookmarked this link (below) to the pump manufacturer, so I could watch the video again and remind myself what to do when the pump signaled "I'm done." My pump also sometimes signaled "I'll be done in two hours," but not every time. Also, write down the 800 number that's on the pump itself and the ID no. on the label of your pump; if the alarm goes off for any reason while he's asleep, you don't want to have to fumble to get the pump out of the pouch so you can get that info. I never had a problem with the pump, in 8 rounds of chemo. ................. https://infusystem.com/education-ipad

My pump tips:
.....1: I kept a small cardboard box, lined with a clean towel, in the bathroom so I could set the pump+bag in the box when I use the toilet or the sink -- easier for me than trying to keep the shoulder strap in place while my hands where otherwise occupied. If you do this, be sure to keep a few feet of clear tubing out of the pump's bag.
.....2: Don't bend down when wearing the pump; downward movement might make the needle shift a fraction of a millimeter and pinch a little. (This was seldom the case with me, but it did occur the 1st time I wore the pump.) I wouldn't say it hurt -- it just pinched a little for a moment.
.....3: I made a point of doing almost nothing physical when wearing the pump, but when I did a few small chores (ex.: washing the dishes), I tied the bag tightly around my waist.
.....4: When reading in bed or sleeping, I found it easier to keep the bag on the bed, to the left of my head (I sleep on the right side of the bed). Also, when my port was new, I didn't sleep on the side where my port is -- slept on my back or on my left side. (About four months after the port as inserted, I felt comfortable sleeping on my right side; others might have been comfortable sooner.)
.....5: I'm a little germ-conscious, so I handwashed the bag, with a gentle soap, before each new chemo cycle. Be sure to let it air-dry in a place with good circulation (I put it on a drying rack under the ceiling fan in my dining room).

The side effects probably won't be as strong the 1st time, but he will feel some, and they are a bit strange. I had a very strong reaction to the irinotecan (the third infusion): my eyelids twitched, my nose ran, I developed (briefly) post-nasal drip, and I felt some urgency to defecate. After that, the nurse always gave me atropine along with the irinotecan (it halted the urgency to defecate, but the other side effects continued).

My pattern was: I felt worn out on infusion day; felt not-bad on days 2, 3, and 4 (probably because of the steroid that I took on days 1, 2, and 3, as @markymarkfl noted); on days 5 and 6, I had my most-intense side effects and did nothing but listen to TV or radio while lying in bed and taking anti-nausea Rx; after that, I felt not-great for three days, but felt increasingly better on each of those three days; and then felt pretty normal. Everyone's pattern is different.

Did his onc. suggest that he take generic Claritin on days 1-5? It helps prevent bone pain.

Good luck. This will be a period of adjustment, but it's pretty manageable. Take care.

thank you...i honestly think i may be more nervous than he is about this!!! i guess part of it with me is simply wondering how it will affect him...not as much physically (yall have done a fantastic job of telling me things to watch out for) but mentally...he has combat PTSD and is an amputee (IED) so there's ALWAYS something going on mentally with him whether he admits it or not...

@mommacandy, I am on a slightly different version of this being that I get the liposomal irinotecan instead of the irinotecan but all the other drugs are the same and I have been through 10 rounds so far. Everyone’s experience can be different so getting through the first rounds, you may have to just see how it goes and let your doctor know of any effects as they can prescribe things to help. In general I don’t feel very well for a few days and just generally lay on the couch for most of the day although I do go for a walk every morning but have had no issue with diarrhea or vomiting. I do take Olanzapine at bed time for the first 5 days of chemo and suspect it helps a lot and it does put me out at night so I sleep pretty heavily for those nights. I have had no issue with the chemo pump as it comes with a fairly long tube and I don’t move around a lot at night so just lay it on the nightstand beside me. I did forget about it one time getting up to go to the bathroom and it hit the deck but fortunately kept on ticking. For chemo days I pack my lunch and snacks and entertainment items and I drink a lot of water. I’ve been advised that the water will help flush the chemicals through so I’m just constantly drinking it. The nurses in the infusion room are a wealth of knowledge so I recommend asking them any questions you may have. I wear gloves on my morning walks for several days to deal with the cold and I don’t eat cold things…yep, gave up my favorite dessert, ice cream. To be honest my tastes have changed and things I used to love to eat don’t sound as appealing. I hope everything goes well for you!!

The link above to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7810270/ notes that compression therapy can also be helpful in preventing neuropathy. It's a lot more comfortable/tolerable than ice, and in one study found statistically significant improvement in CIPN for breast cancer patients on Abraxane.

FWIW, I've attempted to cover all the bases (compression and icing) on my feet by wearing compression socks and these (fairly bulky) inflatable ice+compression boots while the chemo is infused: https://www.amazon.com/gp/product/B07B7Q32SS . I don't have a good solution yet for cold/compression gloves.

I am still experiencing neuropathy in my hands and feet despite this, but since it's not a controlled experiment, I have no way to know if the neuropathy would be worse without the boots. Between Abraxane and Cisplatin, I'm getting a double-whammy of neuropathy-inducing meds.

Saline keeps you from being dehydrated. I have difficulties drinking a lot of water post chemo so the saline helps with hydration which helps reduce nausea.

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/

I have a bunch of "rash guards" -- skin tight lycra shirts for surfing that prevent fiberglass and surfboard wax from causing a rash on your chest, while doubling as sun protection. My solution was to just put the shirt on over the pump, and that held it in place and kept the tubes from flopping around. It's a breathable and thin enough fabric that you don't get all hot and sweaty while sleeping, and it worked for me.

Alternatives could include Ace bandages, super-small backpack worn backward (on chest), sports bras, etc.

Another alternative to ask your infusion center about is whether they have any of the new, disposable elastomeric pumps. One bonus is that you don't have to return it. But I've heard a few pros and cons about how well they work. The fluid flow is somewhat temperature-sensitive, so there may be issues with people who cover up with 8 blankets or leave the windows open during a blizzard.

Re staying at the infusion center, of course it's up to you and him. In our case, my husband stays with me the entire time. I cannot leave the center to get food, and the only things they provide are various beverages and snack items (graham crackers, cookies, etc.). I would be awfully hungry without his help. We bring books and crossword puzzles and plan to stay the day. (As I said earlier, we're usually there 6-7 hours, by the time you account for blood workup, premeds, chemo meds and pump installation.) He goes in and out as needed to visit the hospital cafeteria or Panera (in hospital) for food and snacks. Plus, it's nice to have someone there to talk to and just be with. Edited to add: Each infusion station at our hospital is also equipped with a TV, and there are books and magazines to read. Maybe most importantly, chemo is a good time to sleep! The quiet and the drugs are conducive to sudden and lengthy naps.

Re fluids, chemo can be very dehydrating--even more so if you're dealing with vomiting and/or diarrhea. I have standing orders to get 1,000ml of fluid on pump removal day and the next day, when I get my growth factor shot (Udenyca). I have declined in recent cycles because I didn't need it, but I have used this in the past, and it can really help.