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So sick after first round of chemo: What can I do to help?

Posted by rvm @rvm, May 15, 2023

I had a successful Whipple operation on stage 1 pancreas cancer on January 31, 2023 did not experience any pain after surgery or doing recovery. No pain meds needed! Completed first round of chemo and have been so sick and meds don’t help. Asked to go off chemo but still have continued with nausea, no appetite, headache, fatigue, chills, fever. what could be going on?

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frygirl777 | @frygirl777 | Jun 7, 2023
In reply to @ncteacher "Emend does help me, so I hope that's a good addition for you. What is your..." + (show)
@ncteacher

Emend does help me, so I hope that's a good addition for you. What is your chemo dosage level? As I posted above (or somewnere--I forget!), I did round 1 at 80 percent of the standard dosage for modified Folfirinox. The oncologist was going to do the full dose, but realized that I'm older than I present (I'm 70 but seem younger), so he reduced round 1 to 80 percent. I had horrible side effects, so rounds 2 and 3 were reduced to 60 percent of standard. That has worked much better for me. I have not had nausea or vomiting, although occasionally I feel a little "touchy" in my stomach. I've been able to eat and drink. I have not had diarrhea. I haven't needed additional fluids either.

As I also posted somewhere, my oncology nurse practitioner said very, very few people (her words) can tolerate the full dosage of modified Folfirinox--it's an extremely tough regimen that was tested on people who are much, much younger than I am. Before the nurses ordered the meds for round 2, they called my oncologist for a quick consult. I told him everything I'd suffered, and he reduced the dosage from 80 percent to 60 percent of standard. So, if you were me, now knowing what I know after 3 rounds, I would tell my oncologist everything I've suffered over this round and ask whether a reduced dosage level could be more beneficial. I mean, if you can't tolerate the treatment, what good is it doing you? I wish you all the best, and I hope you feel better today! We are all on such a challenging journey.

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Yay! They are modifying my dose for the coming round (3rd). I feel touchy in my stomach often & it’s very uncomfortable! I definitely hear you on that.

As for the nausea & vomiting…I am happy to report no vomiting after round 2 but a slight bit of nausea occasionally. The pre-IV Emend plus additional steroids for 3 days after did the trick. I am getting IV hydration also twice per week, which I can only believe, helps me a lot!!! Being able to eat small amounts again is a plus. I am however incredibly exhausted since completing round 2. I’d love to incorporate some light exercise like walking on the country desert roads around my home at sunset. That is my new goal & hopefully it will help combat my fatigue some.

I have my very first PET scan today so am a bit nervous but going in positive.

I hope you are hanging in there!

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frygirl777 | @frygirl777 | Jun 7, 2023
In reply to @rvm "I just quit chemo altogether. Am not on any regimen." + (show)
@rvm

I just quit chemo altogether. Am not on any regimen.

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Is there any way they can reduce your chemo dosage rather than just stopping altogether? I have read through The Hirschberg Foundation who works with UCLA that they still have incredibly favorable results with chemo at reduced dosages for extended periods. Reduced dosages can = little to no side affects at all. In fact Dr William Isacoff who I hope to get a 3rd opinion from says he has a TV show producer on a reduced dosage and she is doing remarkably well and working FT due to all of her side effects being diminished. Much better quality of life & amazing results! It’s about YOU & your quality of life! You do have options! You just need to know about them. If they don’t go for that, switch to a different more open oncologist. Please look into what I mentioned. You are at a low stage & have hope!!!

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gardenlady1116 | @gardenlady1116 | Jun 7, 2023
In reply to @rvm "I just quit chemo altogether. Am not on any regimen." + (show)
@rvm

I just quit chemo altogether. Am not on any regimen.

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Here are prayers for you.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 6, 2023
In reply to @rvm "I just quit chemo altogether. Am not on any regimen." + (show)
@rvm

I just quit chemo altogether. Am not on any regimen.

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I hope you're feeling better. Have your symptoms lessened with time?

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rvm | @rvm | Jun 6, 2023
In reply to @colleenyoung "@rvm, I wanted to check in with you. How are you doing? Have you been able..." + (show)
@colleenyoung

@rvm, I wanted to check in with you. How are you doing? Have you been able to continue with chemo? What drug regimen are you on and how often?

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I just quit chemo altogether. Am not on any regimen.

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3 replies
gardenlady1116 | @gardenlady1116 | Jun 1, 2023
In reply to @frygirl777 "Thank you for asking! I have no nausea yet but am on the home infusion day..." + (show)
@frygirl777

Thank you for asking! I have no nausea yet but am on the home infusion day one. Likely high on steroids yet.

I woke up with horrid tingling in my fingers this morning. I took some Boiron homeopathic medicine called Kali Phosphoricum & the tingling ceased within literally 10 minutes. I highly recommend that.

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I have had the tingling. Cold made it worse so I am grateful for warm weather. Don't need two pairs of gloves, two pairs of pants, etc. just to go outside.

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myacim | @myacim | May 31, 2023

You might want to check to see if you're allergic to that chemo drug. There are usually alternatives if you react badly to one.

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frygirl777 | @frygirl777 | May 31, 2023
In reply to @ncteacher "How are you doing today? I hope the Emend has helped and that you're experiencing some..." + (show)
@ncteacher

How are you doing today? I hope the Emend has helped and that you're experiencing some rest and relief after the last couple of weeks and yesterday's chemo. When you feel like it, please let us know.

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Thank you for asking! I have no nausea yet but am on the home infusion day one. Likely high on steroids yet.

I woke up with horrid tingling in my fingers this morning. I took some Boiron homeopathic medicine called Kali Phosphoricum & the tingling ceased within literally 10 minutes. I highly recommend that.

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1 reply
ncteacher | @ncteacher | May 31, 2023
In reply to @frygirl777 "No nausea but am still getting the infusion. So far I broke out in a rash..." + (show)
@frygirl777

No nausea but am still getting the infusion. So far I broke out in a rash on my forehead today from the Oxaliplatin. 🙁

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How are you doing today? I hope the Emend has helped and that you're experiencing some rest and relief after the last couple of weeks and yesterday's chemo. When you feel like it, please let us know.

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1 reply
gamaryanne | @gamaryanne | May 31, 2023

Wow. Yet another side effect of oxyplatin! Mean stuff. Glad you are able to stick with the infusions. Keep us in the loop on what works for you.

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