So sick after first round of chemo: What can I do to help?
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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Sorry to hear it. What type of chemo are you on, and when did you start it, and how long do they expect you to be on it? Which meds didn't help?
First thing you should do is let your oncologist know, and ask him/her to let your Whipple surgeon know. There's always the possibility the current sickness is unrelated, or possibly related to a post-surgical infection, or directly related to the chemo, but the onco and surgeon should be willing to take your call almost immediately on this. There could also be some latent pancreatitis that has flared up. Too many variables for me (not a doctor) to even guess…
I managed to get a nasty infection 3 weeks after having the bile duct stent inserted during my pancreas biopsy. Most of the same symptoms.
During your treatment, most centers infuse a good cocktail of anti-nausea meds before they start the chemo drugs; for the next treatment (*), you might ask them if they can increase those, although it won't help much with the headache, chills, or fever, the stomach relief might at least reduce your feeling of fatigue. Unfortunately, fatigue is a major, common side effect of the two major chemo regimens.
With my post-Whipple treatment (GCA), there's a bunch of steroids mixed in as one of the anti-nausea pre-meds. It stays in my system for 2-3 days, and the nausea starts to creep up as the steroids wear off. (Note: The steroids can also elevate your blood sugar, so be sure to try and track/treat any diabetic issues you may have.)
But I have 3 prescription meds (Zofran, a steroid, and an even stronger med) that I can take those first few days. You might find an oil or gummies with CBD that can relax your mind and your stomach. In some states, medical marijuana is an option for nausea and appetite, but be extra careful of the psychoactive side effects when you're already in a weakened state. Megestrol is an appetite stimulant that really worked well for my dad after his chemo.
Also, be extra careful with the foods you are eating. Post-Whipple, I didn't get enzymes for about 6 weeks, and found my typical fatty diet caused all sorts of digestive misery. And since I developed diabetes concurrent with the PC, I've found careful sugar management helps avoid some of the roller-coaster headaches.
I also found after pre-Whipple chemo treatment #5 (with Folfirinox) that one of the chemo drugs was unleashing my sinuses, causing more misery and headaches, but a simple Zyrtec before treatment resolved that issue before the next 7 sessions.
(*) I encourage you to try and stick with the post-Whipple chemo as long as you can, to help kill off any MRD (Microscopic/Minimal Residual Disease) cancer cells that might remain in your system and could spread. @stageivsurvivor can attest to that.
I'm not sure if my recurrence was from cancer cells that had spread undetected before my Whipple, or if the remnant pancreas just turned cancerous after the Whipple. I didn't have any chemo post-Whipple until we discovered the recurrence, at which point it was too late for any easy fixes. Automatic post-Whipple chemo might have slowed the whole process down.
If you do wind up stopping the chemo, please be extra vigilant about getting all the follow-up tests (CA19-9, Signatera, imaging) as often as possible, and react VERY quickly if ANY of them go even slightly abnormal.
I am not a medical professional, but my read is that the Whipple is simply part of the process – chemo is essential, and while you may have substantial side effects, you should try to get the components adjusted until you can continue it for as long as possible.
@mayoconnectuser1 , Although Whipple is a part of the process, there is a protocol called TNT (Total NEOadjuvant Therapy) in which all chemo is done before the Whipple, and none after. That's what I was on, and I'm not sure it was the right call, given my quick recurrence after Whipple.
The opposite of NEOadjuvant just being "adjuvant" with surgery first and all chemo after the surgery, and the obvious third alternative of doing chemo both before and after. I posted links in another recent thread of a YouTube debate between two prominent physicians about those approaches.
Given my experience, when a tumor is labeled resectable, my reaction now would be to get it out as soon as possible. This paper https://link.springer.com/article/10.1007/s00423-021-02362-y "State-of-the-art surgery for pancreatic cancer" from 2021 states, "During the last twenty years, it has been well established that all surgical approaches to pancreatic cancer need to be supplemented by adjuvant therapy" and then goes into more detail from there.
So I'm surprised they went TNT with me, but there are patients out there who have had better outcomes than I did with the same approach.
My advice/encouragement to the original poster @rvm is give it hell!!! If you got through the Whipple that easy, you can find a recipe that works and get through the chemo. I assume they reported successful resection with clean margins — don't gamble with this second chance on life! You're so close to the end of the tunnel, you'll get there.
I don't qualify for the Whipple, but I can relate to being so sick after chemo round 1. (And I get your comment about wanting to stop because it's so bad. I told my husband not to panic, but I could see why my brother halted chemo–it's arduous at best and awful at worst.) In my case, the MD prescribed 80 percent of the standard care for round 1. I had nausea and vomiting for nearly two weeks and uncontrollable diarrhea for 6 days during the off-chemo week. Heck, I was still throwing up when I went for chemo round 2. Based on those side effects, round 2 was reduced to 60 percent of standard. I've done much better. No nausea/vomiting, and I do have some diarrhea, but so far not bad. The NP told me today that very, very few people can tolerate the full dose of modified FOLFIRINOX, so we're going to stay at 60 percent. I would absolutely let your medical oncologist know about the side effects and how sick you are; perhaps they can adjust the next round in some way to help you tolerate the chemo and continue to make progress.
Yes, I am familiar with neoadjuvant and adjuvant protocalls, and the ongoing conversation regarding which is more appropriate.
I wish the outcome was significantly different between the two – hence my general sense that one should start chemo as soon as possible once diagnosed, and continue for as long as possible., with or without Whipple.
Amen. Well said
@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?
I had my first 5-FU round on Tuesday, May 16, 2023. In my pre-infusion IV, I received Atropine to prevent diarrhea, Kytril for nausea & steroids to halt the nausea & vomiting. My nausea & vomiting didn’t hit until Saturday, May 20 and did it hit hard! Zofran & Compazine (which I was given to take home) did nothing for my nausea & vomiting. I ended up in the ER and was given IV hydration plus Reglan. Reglan did nothing for me either except make me drowsy being that it has to be taken with Benadryl. I have now been prescribed Olanzapine which I am going to try. It’s my rest week & I am just a few days away from my second round. I finally was able to eat a little last night. I’m hungry as heck but because I’ve hardly eaten in 2 weeks, I’m feeling weak. Labs are fairly normal other than slightly lowered RBCs & slightly elevated WBCs. Been back to the cancer center for IV hydration 3 additional times since the infusion, due to the nausea, vomiting & loss of appetite. Was given more steroids to control the nausea & vomiting. My oncology nurse, with 30 yrs experience told me ‘most people don’t get so sick from this treatment regimen!’ Guess I’m just lucky (not) or very sensitive to pharmaceuticals or my body is saying FU to the 5-FU? I am not at all looking forward to the next round. I was nervous for round 1 and my anxiety is much greater now for round 2!
The nurse told me that they will add Emend to my pre infusion IV cocktail next time. Has anyone else had this much illness from their 5-FU (plus Oxaliplatin, Leucovorin & Irinotecan) chemo? If so, please share what has helped you? My oncologist has not mentioned lessening the dose. Thanks in advance!
I’m so sorry to hear how sick you’ve been! I totally understand as I also reacted this way after round 1. It has been an incredibly tough two weeks! Have you had round 2 yet with the modification down to 60%? I’m curious if you’ve done any better this round. My oncologist has not offered to reduce the dose and round 2 is on May 30. I’m incredibly nervous & don’t want to go in fear of what’s to come.
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.