1st FOLFOX treatment & im miserable

MBink24
MBink24 Member Posts: 6 Member
edited May 28 in Colorectal Cancer #1

I was hoping to be able to handle the treatments and be able work on and off but this first weekend has been unexpectedly bad. I starred throwing up the Saturday I was unhooked after 44 hours of 5-FU. I I’ve been taking Zofran and/or Ativan and just feel nauseated almost all the time, thrown up 3-4 times Sunday and today. Does this get any better? I am getting 11 more treatments every other week for stage3a colon cancer & not looking forward.

Appreciate any help

Comments

  • NewHere
    NewHere Member Posts: 1,428 Member

    H

    Welcome to the boards, though I am sorry you are here. I have had various forms of chemo, including FOLFOX and FOLFORI (both FOLFOX and FOLFORI use 5FU). Some things that worked for me for reducing the side effects were:

    1.). The doctor dialed back the amount of the drug. There is often some leeway in there, with not much difference in the effect. In other words reducing a bit will still work to deal with the cancer. So have 10 oz instead of 12 oz comes out with the same result, but could help. (Note that I am just throwing numbers out, not actual doses.)

    2.). Have the infusion rate slowed down. When I was on FOLFORI it took a few sessions to get it right. If they infused me too fast I experienced the side effects a lot more.

    3.). Have the doctor add more premeds on board during your infusion - there are anti nausea meds and steroids (pretty sure I had steroids) which can help reduce the effects. (About the time of the disconnect is where some of those on board medicines start leaving your system.)

    4.) Start taking the Zofran ahead of time if you see a pattern. If the nausea is starting after disconnect, but you are okay before then, start taking the Zofran before you start feeling sick. It is better to be ahead of the game, then to play catch-up.

    You are starting to get used to all of this, and hopefully it gets better. For most of my chemo, and side effects, I would get them once early on, then not again. A couple of were a bit more. Fortunately I only vomited once from chemo - though I would be queasy during the first week of the two week cycle. Most of the time some crackers, tea/ginger ale took care of things. I do recall using Zofran more often towards my first FOLFOX treatment than towards the end.

  • MBink24
    MBink24 Member Posts: 6 Member

    Thank you so much for this information. I will definitely discuss with my oncologist who is aware of my side effects. She started me on Zyprexa & it’s been better than Zofran & Ativan but I still get queasy. I hope this past week was the worst one I’ll have.

  • Trubrit
    Trubrit Member Posts: 5,804 Member

    If you are throwing up allot, I would be talking to my Oncologist, and like New Here said, he may adjust the dosage on your second round.

    Chemo isn't a walk in the park, and sadly, the side effects can accumulate with each round; but excessive vomiting and diarrhoea can cause dehydration and you don't want to go that route, as it will land you in the ER.

    I hope that things get sorted for you, and the rest of your treatment is bearable.

    Keep us posted.

    Tru

  • MBink24
    MBink24 Member Posts: 6 Member

    I went in for my 2 nd treatment today & hop to do better. My Oncologist did make a few adjustments, skipped the pre-treatment Dexa. I hope I can handle this better.
    I definitely am active on my pt portal, messaging with the Dr & RN.
    Thanks for your replies!

  • smithdoor
    smithdoor Member Posts: 17 Member

    FolFox is basically 5FU and Oxaliplatin.

    The 5FU is not to bad.

    I was told in 2009 I had stage 4 colan cancer

    In 2009 I had 13 treatments of Oxaliplatin not to bad both feet and hands are still num. The up side is I am still alive today and retired in 2018

    Dave

  • MBink24
    MBink24 Member Posts: 6 Member

    I also get Leuvocorin, so a total of 3 meds. I got my 3rd treatment & cont with nausea despite trying Zofran in the am, Ativan midday and Zyprexa at night. My Dr added Zyprexa in the morning and use the other 2 as needed. My best days are the 3-5 days before my next treatment. I haven’t found the right combo yet. Still trying. I’ve read about Compazine, but have not been prescribed it.

  • smithdoor
    smithdoor Member Posts: 17 Member
    edited April 17 #8

    The only thing i can say is watch your diet. I know at time had 5FU and Oxaliplatin My wife was on Nutersystem and I eat her food.

    I Had few problems other that being tired and hands and feet num

    Hope that helps.

    Dave

  • Susan13a
    Susan13a Member Posts: 7 Member

    I tolerated 5he nausea a bit better than you. In my case I had both Zofran and compazine. I was told to start taking them before I felt sick. I usually took it the day the pump came off. They recommended I alternate between the 2 medications taking them every 4 hours. This meant I often had both medications working together. I would ask your oncologist if adding compazine like this would be helpful. Good luck!

  • PTiger
    PTiger Member Posts: 5 Member

    I also had my first round of FOLFOX a week ago, had some weird side effects of facial muscles "cramping"—no pain like an actual cramp, just tightening of the muscles in my lower eyelids and lips. This seemed to pass w/pushing fluids and eating. Nausea/vomiting wasn't an issue, but the steroid I was prescribed to help with N/V (dexamethasone) was causing some heavy-duty heartburn by the second day.

    All in all, I feel lucky to have gotten off so easily this time around, am feeling well other than tired right now. I do understand that the effects can be cumulative and I appreciate the info mentioned above about what can be done to mitigate side effects if they get severe. I'm also hoping to work through chemo, as I am the only income in my household and need both the paycheck and the health insurance from being employed.

    Thanks for sharing your experiences, all.

  • Capox Dude
    Capox Dude Member Posts: 127 Member

    I was never nauseous at all when I took the pill version of what you are taking (Capox) via infusion. Several of the patients I chatted with during the course of the ox infusions told me that the dissolvable Zofran is much more effective than the pills. for them at least. If you do not have the dissolvable form you might ask for that and see if it helps. Best of luck.

  • MBink24
    MBink24 Member Posts: 6 Member

    I am 50% done with my 12 treatments. I realized Dexa helps with n/v. The Oncologist was more concerned about my blood glucose so I told her I can manage my glucose , I need the Dexa if it’ll help with n/v and it sure did.
    I get to skip the Oxaliplatin at least for 2 treatments because of my liver function tests going up. The Ox sure causes me the worst n/v so this eeek has been the best one so far, no nausea, some queasy days but all good, no anti nausea meds.
    I hope I don’t have any issues and finish these treatments mid Aug.

    I appreciate all your comments!!

  • smithdoor
    smithdoor Member Posts: 17 Member

    I Have had 106 chemotherapy treatments since 2009.

    I Was diagnosed with stage 4 colan in 2009 just till that to your oncologist.

    Good luck

    Dave

  • MBink24
    MBink24 Member Posts: 6 Member

    I also get Leuvocorin, so a total of 3 meds. I got my 3rd treatment & cont with nausea despite trying Zofran in the am, Ativan midday and Zyprexa at night. My Dr added Zyprexa in the morning and use the other 2 as needed. My best days are the 3-5 days before my next treatment. I haven’t found the right combo yet. Still trying. I’ve read about Compazine, but have not been prescribed it.