I’m home from my first FOLFOX infusion, which was largely uneventful. I am experiencing some interesting side effects, but thanks to lots of advice from other patients and a wonderful infusion nurse, so far there have been no surprises.
Today was pretty straightforward. I arrived at the infusion center at 8 am, did the usual weight and vital signs check, and then headed back to a big comfortable chair with this lovely view:
Shortly thereafter, an aide brought me a warm blanket and a bottle of water and told me a volunteer would be coming by with the snack cart. Chemo is sort of like a nice spa day or a first class flight – well, except for the big needle and all the beeping IV pumps and the poison. I got to skip bloodwork today because that happened during my checkup on Monday (which is good, because I have had someone stick me with a needle at least once every day this week; I was quite happy to do without another one).
Ater I was settled in, my nurse brought me a big dose of Zofran (anti-nausea med) and a dose of Decadron (the steroid I wrote about last time). She warned me that the steroid
might dramatically increase my appetite. I sort of laughed that off until I realized that I had eaten my entire lunch and most of the snacks I brought by 9:20 am. Oops.
After the pills, I sat with a dextrose drip for a while until the big meds came out. We hooked those up, and waited to see whether I’d have an allergic reaction, which, happily, I didn’t. The biggest problem I encountered came when I tried to wrestle my enormous IV tower down the hall to the bathroom, which I did about every 20 minutes thanks to the IV fluids and my diligent attempts to follow instructions to drink a lot of water. Now, I’m clumsy to begin with. When you add an IV tower that has one wonky wheel like a supermarket shopping cart, there’s simply no graceful way to move around. Fortunately, I bumped only into a couple of walls and not into any other patients. I’m sure some of them were wondering what on earth was in my infusion as I staggered past crashing into things. It’s always nice to add a little comic relief to someone’s day.
After a few bumpy trips to the bathroom, and a few hours in the chair, the oxaliplatin/leucovorin bags were gone, and then my old friend Eleanor appeared to join me for the trip home with some 5-FU. She’s here with me now, whirring away and, I hope, zapping any lingering cancer cells.
So…side effects. I’ve already mentioned the steroid binge. That urge has subsided somewhat, perhaps because about an hour after I left the hospital, I tried to eat a pretzel and yelped in pain with the first bite. Oxaliplatin can interfere with some peripheral nerves, including some in the hands and feet, and some associated with the parotid (salivary) glands. So when I take a bite of food, it feels as if I’ve just tried to eat a lemon stuffed with Sour Patch Kids and coated with cayenne pepper. Apparently, foods that trigger a lot of saliva exacerbate this effect (that piece of pineapple before dinner was a very, very bad idea). This “first bite” pain subsides after about 20-40 seconds. The pain reappears if it’s been more than 30 minutes or so since I last ate something. It does make one think twice about absentminded snacking – I guess it’s an effective form of aversion therapy for careless eaters.
My nurse also warned me about cold sensitivity, so I’ve remembered to use gloves to remove things from the refrigerator. I’ve also got a big pitcher of water sitting out at room temperature, because even tap water is much too cold for me to drink; I tried that and felt like I was swallowing something that contained shards of glass. It dawned upon me this morning that all this is going to mean no iced coffee, no cold lemonade, no smoothies made with frozen fruit, and (here’s the real heartbreaker) NO ICE CREAM. Take a moment to ponder that, if you will. I hold out some hope that all these effects are acute ones, which means that they may disappear a few days from now, at which time I will be indulging in large quantities of frozen desserts.
What else? I feel pretty well wiped out this evening, which is not all that pleasant, but is, I think, preferable to feeling jittery from the steroid. Mostly, I just feel – weird. I’m grateful that I have a day to rest tomorrow with no more trips to MGH, and I’ll be able to disconnect Eleanor myself on Friday instead of going back to the infusion center. I have not yet experienced “pins and needles” in my hands and feet; I’m hoping to avoid that kind of neuropathy until a bit farther along in the cycle. If it appears, and if it gets really bad, my oncologist will probably want to reduce the dose of oxaliplatin or cut it out entirely, and I’d really like to stay on a full dose – I want to do everything I can to make sure the cancer is GONE.
So the first of eight infusions is over, and all in all, it wasn’t so difficult to tolerate. I have a schedule of anti-nausea meds to take over the next three days, extra gloves for the kitchen, and plans to spend tomorrow doing as close to nothing as possible.

Iain says you get points for optimism (spa day) and Dylan says you should be a writer. I’m amazed you would call the day “uneventful”!
Your courage and optimism are so inspiring. Enjoy the beautiful weather while resting and healing.
Counting down. Lol at you crashing into walls but not wanting to slow down as you have to get to where you are going…. Your eloquence continues to amaze
My first dose is next Fri. so I’ll be one dose behind you. Be interesting to compare side effects. Don’t think I’ll get that great view though. I have 12 doses in all. Why just 8?
Jenny, I’m doing only 8 rounds of FOLFOX because my oncs count the pre-operative chemo as credit for time served, essentially. Did you have neoadjuvant chemo/radiation, or just go straight to surgery?
Hi Beth – Amy Penwell here….Your story and your bravery are amazing, but that isn’t surprising because you are amazing to begin with. I know that it is possible to do nothing but not actually rest. I will offer you the same mental distraction someone offered me when I needed to be able to escape. Specifically, if you are up to reading and need a reason to stay glued to your chair, try the Outlander series by Diana Gabaldon. Really. Consider it a prescription. If you need a copy I’ll send you mine!
Oh my, Beth. I think there’s no way to stop keep on keeping on, but I am still inspired by the way you keep on keeping on. Stay strong, my friend, and relax as much as you can. Are there cognitive effects or can you still enjoy a good book and/or a trashy episode of Jersey Shore? Hope both are in the realm of possible for you, and that the others in your life permit that, something that I think is perhaps the second hardest part? Love you. ((hug))
Beautiful view. Wishing you well with your final phases of treatment.
It’s strange to me how close our cases are yet, how different our treatments have been. East coast/West coast versions??? I have had an oral chemo the whole time, except the very first dose. And with the oral (Xeloda) I’ve had minumal side effects. It sure does feel good have this stuff almost gone and out!!!!! I’m meeting with the oncologist next week to get my final treatment plan.
Love your blog……thnks!
Hi Ruth: Actually, Xeloda (the oral chemo med you took) and 5-FU (what I get from Eleanor) are different forms of the same drug. I think our treatments have followed pretty much the same path, at least up through surgery. I chose to go with 5-FU instead of Xeloda both before and after surgery because I didn’t want to risk the hand/foot syndrome that many people see with Xeloda (I have lots of issues with skin reactions, so my oncs and I were worried about trouble with peeling palms and soles). I have Oxaliplatin added to the 5-FU this time around because of the 2 positive lymph nodes that were identified after my surgery; if I’d had a complete response to the chemoradiation (tumor gone, no positive nodes) then I would have had the option to do Xeloda or 5-FU alone, or nothing (but I wouldn’t have been confident enough to skip adjuvant chemo altogether). It’s clearly the Oxaliplatin that’s causing my side effects this time around – before surgery I did just fine with the pump and really only dealt with fatigue. All the nerve-related issues are from the Oxi. I know you’ve just had surgery and it sounded like your response was really good (no positive nodes?) so you may have an easier time from here on out, too.