Began folfirinox treatment - have a few questions

Posted by lisn @lisn, Sep 16, 2023

My husband started his folfirinox regimen on Tuesday. I'm thinking that Tuesday is counted as day 1?

Many thanks to all who've posted information about what to expect. During the irinotectan, I noticed he was clearing his throat excessively, and he spoke up because he started to feel very warm. They stopped it immediately and gave him Atropine. The nurse was happy he spoke up when he did, because she said it was definitely a reaction, and what was going to happen next was stomach pain and distress.

Wednesday was the first full day with the pump (day 2?), and he had the pump disconnected Thursday afternoon (day 3?) By the time we got home Thursday, he was exhausted. He was very tired Friday (day 4?). Today, Saturday (day 5?), He says he feels off, tired and achy. I think this is normal from what I've read.

I'm also wondering if I'm counting the days correctly. If I have, then I'm thinking that he may start feeling a little bit more like himself starting tomorrow?

Thank you.

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@ncteacher

Thanks for tagging me, Colleen! I haven't had any issues with a sickly sweet taste after chemo. If anything, my taste buds have been somewhat blunted, making food seem less flavorful than before. Even this, though, has subsided as my treatment has progressed. Perhaps there's a way to doctor the food to give it a better flavor that overrides the lingering sweet taste. For example, years ago, when I received carboplatin for ovarian cancer, I had a metallic taste in my mouth. I switched to kosher salt for meals--regular salt "disappeared" on food--and mint Tic Tacs worked well between meals. You'd need to experiment a little to find the best solution for your husband.

Re fever, I haven't had that either. The only time I presented at chemo with a fever was when I had what ultimately was a gallbladder attack, back in July. I do see that fever can be one of the many side effects of oxaliplatin, so the nurse may be correct. I was originally prescribed an oral dose of dexamethasone, which I also get via IV as a premed, but I haven't taken it since cycle 2, I think. It seemed to cause hiccups, and I really haven't needed the extra support since then anyway.

@lisn , I hope you all have been able to solve these problems. Please let us know!

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Yes, you're right, we're experimenting with remedies! He said that he feels like the sickly sweet issue is in his sinuses. I know that when he gets the saline flush and/or the IV hydration, he's immediately nauseated by the taste and smell. It gets worse when the treatment starts and he says that he feels the chemicals in his throat. The one time he vomited, he got some relief for a short time. He going to try taking the Reglan consistently for a few days and see if that works. 🤞 Thank you for your help!

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@kjc12

You’re so welcome. My husband has found that days 4,5, and 6 are very hard usually. Maybe because the steroids are finished after day 3. He also still gets cramping and has been taking dicyclomine prescribed by his Oncologist as needed. He feels it is been very helpful.

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I do fulfirnox also. I had cramping of mouth muscles (jaw) and cramping of hands during oxaliplten infusion on chemo days. My Dr lowered my oxaliplaten to 50% and i also now get iv 2 gm of calcium and iv 2 gm of magnesium b4 and after the oxaliplaten and I also get benedryll b4 the oxaliplaten. This has helped.

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@katiegrace

I do fulfirnox also. I had cramping of mouth muscles (jaw) and cramping of hands during oxaliplten infusion on chemo days. My Dr lowered my oxaliplaten to 50% and i also now get iv 2 gm of calcium and iv 2 gm of magnesium b4 and after the oxaliplaten and I also get benedryll b4 the oxaliplaten. This has helped.

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Thank you for this information. I hope you're doing well on this treatment. It's so different for everyone.

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@ncteacher

Thanks for tagging me, Colleen! I haven't had any issues with a sickly sweet taste after chemo. If anything, my taste buds have been somewhat blunted, making food seem less flavorful than before. Even this, though, has subsided as my treatment has progressed. Perhaps there's a way to doctor the food to give it a better flavor that overrides the lingering sweet taste. For example, years ago, when I received carboplatin for ovarian cancer, I had a metallic taste in my mouth. I switched to kosher salt for meals--regular salt "disappeared" on food--and mint Tic Tacs worked well between meals. You'd need to experiment a little to find the best solution for your husband.

Re fever, I haven't had that either. The only time I presented at chemo with a fever was when I had what ultimately was a gallbladder attack, back in July. I do see that fever can be one of the many side effects of oxaliplatin, so the nurse may be correct. I was originally prescribed an oral dose of dexamethasone, which I also get via IV as a premed, but I haven't taken it since cycle 2, I think. It seemed to cause hiccups, and I really haven't needed the extra support since then anyway.

@lisn , I hope you all have been able to solve these problems. Please let us know!

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We have found a remedy for the taste he's been complaining about! As time went on, he started to feel that it was a chemical taste and it was present all day, beginning with eating breakfast and going through the day. I saw on the MSK website that they had several mouth rinse suggestions. What's working for him is the baking soda and water rinse throughout the day. It seems to neutralize the chemical taste.

Unfortunately though, he still has persistent nausea up until day 12. He had a vertigo attack yesterday and the physical therapist suggested that he pre-medicate for his next follow up appointment with an anti nausea medication. She recommended Zofran. His oncologist agreed to prescribe it because the Reglan that he's been taking is not working.

I'm hoping that he'll get some much needed relief from the Zofran.

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@lisn

We have found a remedy for the taste he's been complaining about! As time went on, he started to feel that it was a chemical taste and it was present all day, beginning with eating breakfast and going through the day. I saw on the MSK website that they had several mouth rinse suggestions. What's working for him is the baking soda and water rinse throughout the day. It seems to neutralize the chemical taste.

Unfortunately though, he still has persistent nausea up until day 12. He had a vertigo attack yesterday and the physical therapist suggested that he pre-medicate for his next follow up appointment with an anti nausea medication. She recommended Zofran. His oncologist agreed to prescribe it because the Reglan that he's been taking is not working.

I'm hoping that he'll get some much needed relief from the Zofran.

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I hadn't thought about the baking soda rinse. Glad that helps! Re anti-nausea med before chemo, two things. First, what premeds does he get at chemo? Mine include Zofran, dexamethasone and Emend; all are designed to combat nausea, and they're administered via the port before I get any chemo drugs. Second, I have prescriptions for both oral Zofran and oral Compazine. I was told to alternate them as needed to control nausea at any time during the chemo cycle. If the Zofran alone doesn't work, maybe the combo would.

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lien,

I may have missed it, but are you at a center of excellence?

If you are not, my consistent input it to get to one and stay there - for chemo and any other follow-on treatment.

Relocation is difficult, but there is a difference in knowledge, focus and care.

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@ncteacher

I hadn't thought about the baking soda rinse. Glad that helps! Re anti-nausea med before chemo, two things. First, what premeds does he get at chemo? Mine include Zofran, dexamethasone and Emend; all are designed to combat nausea, and they're administered via the port before I get any chemo drugs. Second, I have prescriptions for both oral Zofran and oral Compazine. I was told to alternate them as needed to control nausea at any time during the chemo cycle. If the Zofran alone doesn't work, maybe the combo would.

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The pre meds that he gets through the port are the steroid (I believe it's the same one that you get), and Aloxi. The nurse told us that she was going to let the doctor know that he needs something else. Thanks for letting me know about the Compazine, I'll keep that in mind. I truly appreciate your input, thank you.

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@mayoconnectuser1

lien,

I may have missed it, but are you at a center of excellence?

If you are not, my consistent input it to get to one and stay there - for chemo and any other follow-on treatment.

Relocation is difficult, but there is a difference in knowledge, focus and care.

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Thank you for your message. Yes thank goodness he is! He's being treated at MSKCC. I know that you're absolutely right about the difference in knowledge, focus and care. His cancer was found during an emergency room visit at our local hospital. One of the doctors who came in to see him had indicated that he could do all of his treatments there, but we knew we wanted him to go with MSK.

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@lisn

We have found a remedy for the taste he's been complaining about! As time went on, he started to feel that it was a chemical taste and it was present all day, beginning with eating breakfast and going through the day. I saw on the MSK website that they had several mouth rinse suggestions. What's working for him is the baking soda and water rinse throughout the day. It seems to neutralize the chemical taste.

Unfortunately though, he still has persistent nausea up until day 12. He had a vertigo attack yesterday and the physical therapist suggested that he pre-medicate for his next follow up appointment with an anti nausea medication. She recommended Zofran. His oncologist agreed to prescribe it because the Reglan that he's been taking is not working.

I'm hoping that he'll get some much needed relief from the Zofran.

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Medical cannibas has helped me with my nausea. I take a tincture of 1:1 ratio , one part thc and one part cbd. It's called Harmony. I've had 6 fulfirnox treatments and I have been able to stop Zofran completely and just use cannibas for nausea. It has worked for me.

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@lisn

Yes, you're right, we're experimenting with remedies! He said that he feels like the sickly sweet issue is in his sinuses. I know that when he gets the saline flush and/or the IV hydration, he's immediately nauseated by the taste and smell. It gets worse when the treatment starts and he says that he feels the chemicals in his throat. The one time he vomited, he got some relief for a short time. He going to try taking the Reglan consistently for a few days and see if that works. 🤞 Thank you for your help!

Jump to this post

When I get the saline flush it smells like alcohol to me and makes me feel sick to my stomach. The last time I had the flush , I told them to give me heads up so I could hold my breath- after the flush I then exhaled, and it worked better for me so I didn't have to breathe in during the flush. Have had 6/12 treatments.

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