He starts chemo: Now what do I expect?

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?th=1 . 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.

@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!!

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...

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.

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.

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.

A last comment; if your husband has any GI issues with constipation, getting fluids post chemo is very important. Especially if taking Olanzapine for nausea or odansetron.
Both can be constipating. Combine those with chemo and difficulty eating, bowels could be tricky for several days!

Wishing you all the best tomorrow. Feeling overwhelmed is an understatement when starting this journey. My husband started the regimen you talked about in April. Plan on being there most of the day, especially for the first treatment. Bring a notebook and write down any questions as they go through this process. The nurses will have helpful tips for you and your husband. The treatment rooms are usually cold. My husband brings his sweatshirt jacket every time. He also has the port and goes home for 48hr infusion. We were doing the disconnect at home, but not right away. We are still going for treatments, probably till end of September. Dehydration is always and issue and he now gets IV fluids before chemo and now we have to go back for them to give additional IV fluids on disconnect days. The side effects, they say, can get worse with future treatments because the chemo is cumulative. Do not be afraid to reach out to your Oncologist and team for any help or questions. Take one day at a time. Reach out anytime to me. I pray your husband does well. Don’t forget to take care of yourself too. God bless🙏

I apologize for writing “your husband”. Mistake on my part. Wishing you both all the best.

It might give you some peace of mind to go along. Also, the infusion center will get to know you