Is being this Sick normal?

dn220
dn220 Member Posts: 79 Member
edited March 2014 in Colorectal Cancer #1
Hello all, I'm sure that some of you can tell me if what is going on is normal. I just had my first folfox6 treatment this week, pump was taken off on Thursday, well yesterday I was completely wiped out, nauseas but no vomiting, slept all day and all night, then today I am still completely wiped out, had diarrhea but got that stopped but still can't get up the strength to move around the house, I have no appetite and what I have tried to eat tastes horrible. Is this normal? I just didn't think I would feel so sick after just the 1st treatment. Does it get better after you take a few? I feel like I have a bad case of the flu but no fever.
Deb

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    The day after pump removal, for me, was the worst day...I sort of figured it was my body trying to recover and regroup, now that the seige was over....
    Yes, I was very reactive to the chemo...tinny taste cold sensitivity....my first round was over the day before Christmas...I hardly remember Christmas day...except I found what got me thru alot of the rest...Scalloped Potatoes!!! It stayed down, made my tummy and me feel better...

    Chemo is cumulative. Usually it doesn't get better, but you are no longer surprised, and know that in a few days it's over...

    Hugs, Kathi
  • kristasplace
    kristasplace Member Posts: 957 Member
    YES!!! Hi! I was sick after my first treatment with mostly bad neuropathy, and then terrible exhaustion the first week after treatment. Then i had an 'okay' week, then that would repeat each time. I now know that when i get a mild fever, the neuropathy and exhaustion are leaving my body. I start my fourth cycle of folfox in a week, and this last cycle seemed less awful than any of the others. I think i'm just getting used to what's going on. Your body may adapt to it, and it may not. Everyone is different. Just keep note of how your body is reacting, and compare it each time to see if you have a pattern. I'm surprisingly very functional for most of the time.

    Good luck, and keep us posted!
    Many hugs,
    Krista
  • davidsonxx
    davidsonxx Member Posts: 134
    I used that same phrase to describe how I felt on chemo. It did feel like I had a bad case of the flu. It can be hard to find some food that still tastes OK. For me I found that bland food was the best. It didn't taste like great but at least it didn't taste bad. It seems like most of us find a favorite food that gets us through chemo. Mine was apple sauce which was great since it helped with the diarrhea too. Make sure you drink lots of water. It is easy to get dehydrated when you feel nauseous because you don't want to put anything in your tummy. The water will help flush the chemo out of your system. I also found that keeping a little something in my tummy helped with the nausea. I kept a small bowl of saltine crackers by my chair and would nibble on them during the day. They weren't very nutritious but during the worst of it they were the best I could do. Even the smell of food would make me very nauseous.
    The first treatment is hard because you don't know what to expect. Now that you know how you respond you can be a little more prepared.
  • sladich
    sladich Member Posts: 429 Member
    I was real sick with my first few treatments until they came up with the medication to treat me. Many of the anti-nausea medications didn't work for me. The fatigue got worse with each treatment, as well, as the neuropathy. I was real sensitive to the cold (had my treatments during winter months). I made it through all 12 treatments on schedule. Hang in there and if the symptoms get worse keep asking for new medications. Some work better for each person.

    Debbie
  • claud1951
    claud1951 Member Posts: 424 Member
    After my pump was taken off, for the first two days (at least) I was just real slow, didn't want to do anything, sleepy kind of in la..la..land!

    about the 3r or 4th day I got better.

    Give yourself a couple of days then try, try, try...to get going again! I know..easier said than done, eh? This is what I did for myself.

    Course, I didn't have the sick feeling most of the time.

    Here's to keeping your energy up!

    My best to you
    Claudia
  • dn220
    dn220 Member Posts: 79 Member
    Thank you all for telling me, today is day 3 after pump off and I am feeling a little better, still weak but the diarrhea is, I hope, gone, that was rough too. My son got home last night from his tour in Iraq, he lives about 3 hours from me and said he will be coming to see me in a week or so after all of his requiremnts at his post so I told him to try to come before my next treatment, would hate for him to see me so sick. Again thx for telling me, I had called the office but they never called me back.
    Deb
  • pamness
    pamness Member Posts: 524 Member
    Having the doctor's office not call you back is inexcusable. I had a really hard time with nausea, exhaustion, constipation and then diarrhea. The oxaliplatin caused horrible problems for me. I did find, that although the effects are cumulative, I did better in later treatments because I learned how to manage the meds. What are they giving you for meds. The magic combination for me turned out to be amend, a steroid, and attivan. I also used compazine and zolfran. Before treatment they gave me the steroid, I took it for three days. Right before treatment and for 3 days I took amend once every 24 hours. I took 1mg attivan when I left treatment and then used the attivan, zolfran and compazine as needed. You do need to keep hydrated and try bland foods, as suggested. I found it much easier to eat bread, ice cream - after the neuropathy passed, apple sauce, etc. It's hard. But push your oncologist hard on the best meds - they didn't offer me amend for my first two rounds, it made a world of difference. I only got a few good days each round - I also only tolerated 5 rounds of oxaliplatin. The 5FU and leukovorin were OK. Hopefully you will feel better in a day or two.

    Pam
  • dn220
    dn220 Member Posts: 79 Member
    pamness said:

    Having the doctor's office not call you back is inexcusable. I had a really hard time with nausea, exhaustion, constipation and then diarrhea. The oxaliplatin caused horrible problems for me. I did find, that although the effects are cumulative, I did better in later treatments because I learned how to manage the meds. What are they giving you for meds. The magic combination for me turned out to be amend, a steroid, and attivan. I also used compazine and zolfran. Before treatment they gave me the steroid, I took it for three days. Right before treatment and for 3 days I took amend once every 24 hours. I took 1mg attivan when I left treatment and then used the attivan, zolfran and compazine as needed. You do need to keep hydrated and try bland foods, as suggested. I found it much easier to eat bread, ice cream - after the neuropathy passed, apple sauce, etc. It's hard. But push your oncologist hard on the best meds - they didn't offer me amend for my first two rounds, it made a world of difference. I only got a few good days each round - I also only tolerated 5 rounds of oxaliplatin. The 5FU and leukovorin were OK. Hopefully you will feel better in a day or two.

    Pam

    Again thank you all for responding, although I have never met any of you guys, you have no idea how much it means to me to have someone to "talk" to who knows how I am feeling. I am feeling a lot better today. Still just VERY,VERY weak and somewhat dizzy when I stand up. The neuropathy is not bothering me today. I did have a little trouble swallowing this morning but thats is gone now. Still have no appetite but I have found that, you aren't gonna believe this, but I can eat burnt toast!! Its not like charcoal burnt but almost and it doesn't make me feel nauseas. Sorta sounds like pregnancy tastes huh? Anyway, all of my hugs to u all. It means so much to have u guys out there to talk to.
    Deb
  • dn220
    dn220 Member Posts: 79 Member
    pamness said:

    Having the doctor's office not call you back is inexcusable. I had a really hard time with nausea, exhaustion, constipation and then diarrhea. The oxaliplatin caused horrible problems for me. I did find, that although the effects are cumulative, I did better in later treatments because I learned how to manage the meds. What are they giving you for meds. The magic combination for me turned out to be amend, a steroid, and attivan. I also used compazine and zolfran. Before treatment they gave me the steroid, I took it for three days. Right before treatment and for 3 days I took amend once every 24 hours. I took 1mg attivan when I left treatment and then used the attivan, zolfran and compazine as needed. You do need to keep hydrated and try bland foods, as suggested. I found it much easier to eat bread, ice cream - after the neuropathy passed, apple sauce, etc. It's hard. But push your oncologist hard on the best meds - they didn't offer me amend for my first two rounds, it made a world of difference. I only got a few good days each round - I also only tolerated 5 rounds of oxaliplatin. The 5FU and leukovorin were OK. Hopefully you will feel better in a day or two.

    Pam

    They gave me decadron IV before my infusion and phenergan IV then I have compazine, and phenergan at home. I have xanax to take when I need it for my anxiety, my chemo docs didnt prescribe it my reg doc did, I wonder if that would have worked like the ativan did with you. I may ask them about that. Thanks,
    Deb
  • juliatheena
    juliatheena Member Posts: 2
    Yes, the first few rounds of Folfox were bad for me too. I really didn't have too much nausea, just felt like my batteries were dead. NO energy whatsoever. Not sleepy, but too tired to open my eyes.

    I switched to Folfiri after a reaction to the Oxaliplatin during round 7. MUCH better, and the cancer actually responded better too. I've had 7 rounds of the Folfiri and am at the crossroads now: I'm in remission, my Onc gave me 2 choices. Continue chemo indefinately (GASP!), or take a break, CT scans every 2 months. My primary tumor has shown no activity for 5 months now, the mets in my lungs are so small they don't even show up, there is a 2cm spot in my liver.

    Hang in ther dn220.....sending positive energy your way!
  • pamness
    pamness Member Posts: 524 Member
    dn220 said:

    Again thank you all for responding, although I have never met any of you guys, you have no idea how much it means to me to have someone to "talk" to who knows how I am feeling. I am feeling a lot better today. Still just VERY,VERY weak and somewhat dizzy when I stand up. The neuropathy is not bothering me today. I did have a little trouble swallowing this morning but thats is gone now. Still have no appetite but I have found that, you aren't gonna believe this, but I can eat burnt toast!! Its not like charcoal burnt but almost and it doesn't make me feel nauseas. Sorta sounds like pregnancy tastes huh? Anyway, all of my hugs to u all. It means so much to have u guys out there to talk to.
    Deb

    I had the decadron also - I took it by mouth on my first day of treatment and at home for two more days. Also, as I said had amend and zolfran on my day of treatment along with attivan right before I left. Xanax is an anti anxiety drug but doesn't have the anti nauseau effect of attivan. Also amend (which I think they wait for because it is very expensive) is very effective and doesn't have the side effects of zolfran (headaches and constipation - which sometimes isn't so bad). I don't know anything about the phenerghan. Again, I would urge you to be very aggresive with your treatment team about your meds they make all the difference. It took me awhile to figure them out. They don't necessarily offer up the best out of the block - believe it or not. Are you at a major medical center? I was treated at Mass General in Boston and still had to really state my case. Burnt toast - who cares. Whatever works. Make sure to drink enough water - watered down gatorade, vitamin water etc. It is hard to do, but very important. I also trust if you have diahrrea they gave you the instructions for immotrin. If not, ask for them.

    Pam