First chemo tomorrow--tips, suggestions, cautions?

Posted by ncteacher @ncteacher, Apr 23, 2023

I'll do my first chemo tomorrow (Mon 4/24)--modified FOLFIRINOX, with all the additional meds and the infusion pump coming home with me for a couple of days afterward. I've been told that because I did well during chemo for ovarian back in 2007, I should do well with this. But I admit I'm nervous. I've already packed a bag with stuff to take with us, and I am going to try icing during oxaliplatin (I'd really like to minimize cold neuropathy in my mouth and throat). For those of you who've done this chemo regimen, are there any tips, suggestions or cautions you might share to make things easier? I'd appreciate hearing them. Thank you in advance!

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Well, Zofran gives me horrible headaches & did nothing for my nausea & vomiting the past 3 days. I took it because they told me to take it then I had to take Tylenol XS to get rid of the headache. I was told to go to the ER where I will sit for 10-12 hrs before even being seen in a waiting room full of sick people. It’s really pathetic that there is no place for a cancer patient to get help urgently when they are this sick! The US healthcare system is truly a joke!

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@frygirl777

I fasted prior to the infusion. All that did was delay my horrid side effects but they still happened. I was fine during the infusion and 2 days after I still felt pretty normal. Days 4 & 5 were definitely the worst for me. Zofran & Compazine did nothing for the horrendous nausea I experienced. I cannot keep anything in my stomach and it’s now Day 6. Yesterday all I was able to keep down were a few crackers & a wild blueberry green protein smoothie. Not a fan of smoothies. 🙁

I am deathly afraid to get round 2 now. No idea how I am going to make it through 12 rounds.

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I'm the OP on this thread, and I just finished my third chemo treatment today. What helped me was reducing the chemo dosage. My first was 80 percent of standard; the MD lowered it from 100 percent to 80 percent because I'm significantly older than the original test subjects for this regimen. Good thing he did. Even at 80 percent, the first round was awful--nausea and vomiting for a week and a half, coupled with 6 days of diarrhea. Full strength would have landed me in the hospital. For rounds two and three, I've received a dosage that's 60 percent of standard. This has really helped. The side effects were much more mild.

Other thoughts, FWIW: I did not fast and do not plan to. I have been eating/drinking things that sound good. As a result, my diet has switched from a very veg-based, balanced diet to one focused on starches and sweets. Calories are my goal--the heck with nutrition. We've acquired some really out-of-character foods in this house (gelatin, pudding, Pop-Tarts!). Some things that have worked for me are baked potatoes, scrambled eggs, rice, cream sauces, certain frozen dinners, pancakes with syrup, cookies, ice cream, sorbet, lemonade (I don't have much cold neuropathy). I eat much smaller quantities and I eat more often, maybe every 2-3 hours. I tried PowerAde for electrolytes but it didn't taste good. I'm pretty much avoiding meat.

Re meds, I was told to alternate Zofran and Compazine so I had one every four hours for at least three days. My chemo is on Monday, and I get all the nausea meds there, so I begin the Zofran/Compazine switcheroo on Wednesday a.m. I was also given dexamethasone (steroid) to take along with those meds to help fight nausea. Same approach with anti-diarrheal meds; I alternate Imodium and Lomotil every 3-4 hours.

I'm really sorry you're struggling so much and hope you can find the assistance you need so you can recover before round two.

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@frygirl777

Oh & I developed a huge mouth sore on Day 5 despite gargling & ringing 4 x per day with oncology mouthwash.

I all also have ongoing chills. No fever, just chills.

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I forgot to mention this in my previous post. I hope you're wrapping up warm to help ward off chills. I've had chills as well. Our daytime temps are 80 to low 80s, and we're running the air conditioner indoors. Meanwhile, I'm wearing a long-sleeved flannel shirt, T-shirt underneath and long pants. I look weird outside in the warmth, but it feels good. I also keep plenty of blankets around, including a large Polartec one.

I had something else I was going to mention, but...I forgot. Chemo brain! 🙂

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@frygirl777

Oh yeah, I already have those next to the fridge & freezer.

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So my palliative staff had me take zofran alternating with phenergan every 4 hours starting hours before treatment started. I took that round the clock for the first 3-4 days. Even set my alarm to take in middle of the night the first two nights. Helped immensely!! Having small dry meals through out also helped me-kind of like with morning sickness. Of course you have to watch for constipation with the nausea meds but that seemed more manageable.

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The irenotecan gave me very strange reaction, extreme weakness, felt like I would pass out even without having difficulty with nausea or vomiting. I was hospitalized and given hydration, but even after hydration my blood pressure was quite low. I continued just with FOLFOX. I have BRCA and my tumor shrank down and I have now gone from inoperable to operable. I got Aloxi and Emend for premedication, worked well, towards the end of the infusion pump, I did feel a bit off and have taken a dose of compazine preventively. Zofran did basically nothing. Side effects that have been noticeable are the cold sensitivity, pins and needles with cold. I have discomfort with taking cold food out of the fridge. I only eat food or drink beverages at least at room temperature. My taste in foods has changed dramatically. Chocolate used to be one of my four basic food groups, doesn't appeal to me at all. The biggest issue has been the pancreatic insufficiency and I have had to work on increasing the Creon to get my weight stabilized and reduce the gas and frequent bowel movements. I have been working with the hepatobiliary dietician at MSKCC and that has been very helpful. Regular dietician of no help. At least an oncology certified dietician I believe is necessary.

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Hoping things will smooth out for you as you continue your infusions.

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@frygirl777

Oh yeah, I already have those next to the fridge & freezer.

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Try rinsing your mouth with baking soda - I prefer that to the Dukes mouthwash they prescribed.

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I forgot the most important thing I do (chemo brain!)
I take 800 mg Acyclovir every day. Hope this helps.👍

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@cjay

I forgot the most important thing I do (chemo brain!)
I take 800 mg Acyclovir every day. Hope this helps.👍

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Thank you!

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@ncteacher

I'm the OP on this thread, and I just finished my third chemo treatment today. What helped me was reducing the chemo dosage. My first was 80 percent of standard; the MD lowered it from 100 percent to 80 percent because I'm significantly older than the original test subjects for this regimen. Good thing he did. Even at 80 percent, the first round was awful--nausea and vomiting for a week and a half, coupled with 6 days of diarrhea. Full strength would have landed me in the hospital. For rounds two and three, I've received a dosage that's 60 percent of standard. This has really helped. The side effects were much more mild.

Other thoughts, FWIW: I did not fast and do not plan to. I have been eating/drinking things that sound good. As a result, my diet has switched from a very veg-based, balanced diet to one focused on starches and sweets. Calories are my goal--the heck with nutrition. We've acquired some really out-of-character foods in this house (gelatin, pudding, Pop-Tarts!). Some things that have worked for me are baked potatoes, scrambled eggs, rice, cream sauces, certain frozen dinners, pancakes with syrup, cookies, ice cream, sorbet, lemonade (I don't have much cold neuropathy). I eat much smaller quantities and I eat more often, maybe every 2-3 hours. I tried PowerAde for electrolytes but it didn't taste good. I'm pretty much avoiding meat.

Re meds, I was told to alternate Zofran and Compazine so I had one every four hours for at least three days. My chemo is on Monday, and I get all the nausea meds there, so I begin the Zofran/Compazine switcheroo on Wednesday a.m. I was also given dexamethasone (steroid) to take along with those meds to help fight nausea. Same approach with anti-diarrheal meds; I alternate Imodium and Lomotil every 3-4 hours.

I'm really sorry you're struggling so much and hope you can find the assistance you need so you can recover before round two.

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Thank you for your reply! Learning what everyone else does gives me hope & ideas. Round 2 is complete & I just feel really tired! No nausea & vomiting yet but last round it didn’t start till Saturday morning. They gave me a prescription for steroids to take to combat the nausea & fatigue. I will pick that up tomorrow morning. Taking Compazine before bed tonight. Hoping for the best! Zofran I cannot do because of the headaches. Also hoping the Emend that they put in my IV is longer lasting & helps this time. I’ll keep you posted….thanks again everyone!!!

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