Anyone have light headedness from chemo (folfirinox)?

I'm so sorry that your husband is suffering with dizziness, it's terrible. I had posted on 11/5/23 "Vertigo and Folfirinox" because my husband was having vertigo attacks and then dizziness spells during his chemo treatments and I was wondering if anyone else had experienced that. What we did find out was that he was extremely deficient in vitamin D, which the physical therapist had thought might be the culprit.
He completed his 12 rounds of treatment at the end of February and is working on getting his vitamin D level back up. Maybe you could look into that to see if that might be the issue? Please feel free to reach out if I/we can be of any help. I hope he gets some relief soon.

Thank you! I'll check to see if that is one of the things on his blood test results. I don't remember seeing it. I know he does take vitamin D supplements, but maybe more is needed. I appreciate your response. Dan will finish #12 a week from now, and then I'm not sure what will be done at that time. Thanks.

Sorry to hear he’s going through this. I also experienced lots of lightheadedness and what I described as vertigo while on this regimen. I had to be very diligent about keeping hydrated. I passed out once after standing up too quickly after round 5 and ended up in the ER. After 8 hours and a battery of tests it was determined that I was dehydrated and had low BP. I had been on anti hypertensive meds for a number of years. The doctor recommended reduction in BP meds and extra IV’s in the days following infusions. This helped but it wasn’t until I finished my 12th round before I felt better. They could never really pinpoint the vertigo issue other than to say that there are many side effects and everyone reacts differently. I couldn’t drive on the highway for months as the vertigo was to severe. Happy to report that a month or so after treatment it disappeared. Only lingering side effect is neuropathy in hands and feet. Best of luck on this challenging journey. Tell your husband to hang tough.

Thank you @stevm! He will be so happy to hear of your side effects disappearing. His comment when anyone asks how he's doing is... I'm hanging in there.... but it has been a challenge. It sounds good that after #12 next week that he may at some point be able to walk around without fear. He too passed out once after standing up and walking up the stairs. Luckily he was at the top landing before crashing. Could have been much worse and I know he/we think of that every time he stands. And they told him his BP is too low, so we have been going in for extra hydration often as he seems unable to drink enough. And yes, I've been doing all the driving for months now.
Thank you for your encouragement!
Do you mind me asking if your doctors have you on new drugs after you finished #12? Thanks.

Following round#12 I did six weeks (28 days) of chemo/radiation. 1500mg of oral Capecitabine on the days of radiation. Although there were some side effects it was nowhere near as bad as the Folfirinox regimen. Still dealt with dehydration issues to some extent but it was manageable. I used a product called Liquid IV (avaialble at Walgreens/CVS etc) which I found to be helpful. There are other similar products as well. I went to the gym regulary during chemo/radiation treatment so felt that it was crucial to stay hydrated. I should note that my treatment protocol was a bit different than the majority of patients as I had a distal pancreatectomy and splenectomy prior to the 12 rounds of folfirinox and chemo/radiation.

@sheridanb This likely doesn't apply, but just in case.... During a modified Folfirinox (Folfiri) regimen I had a few bouts of lightheadedness. I also was experiencing significant ongoing weight loss. I've had hypertension for many years, controlled by two medications (HCTZ and Losartan). I discontinued the HCTZ and continued the Losartan. The lightheadedness disappeared, my BPs are normal, and the hypertension remains under control.

Dan has never had hypertension. Glad yours is under control! Thank you for your response.

Thank you again for sharing your experience. Before chemo Dan had exercised daily for decades and was in great shape. So it is now hard for him to barely be able to stand or walk. A year ago he was white water kayaking on big water, but June started all the tests for diagnosis, then chemo for mis diagnosis. Then more tests, CA19-9 number at 39000. Then started folfirinox. Hoping after #12 he can regain some of what he has lost. I'll check into Liquid IV. Thanks again.

@sheridanb, here is the discussion that @lisn started:
- Vertigo and Folfirinox?
https://connect.mayoclinic.org/discussion/vertigo-and-folfirinox/
How is your husband doing with treatment number 12?

Thank you. He got the pump off yesterday, and today is feeling better it seems than he has for a while. I think just the idea that he is done with that series of treatments gave him some relief. They did lower the dosage of one of the drugs slightly because he had had more neuropathy in his feet, so possibly that made it slightly easier. But I think it is psychological that he doesn't have any more of the "whole kitchen sink" of drugs to face again.