The Ox in FOLFOX by Dr. Seuss? Chemo round 1

Lori-S
Lori-S Member Posts: 1,277 Member
edited March 2014 in Colorectal Cancer #1
There's an OX in FOLFOX
that pops out of the box
just to remind you
Hey, I'm TOX -
eeeeeeeeeeeeeeeeeek!

Ding ... Ding ... Ding So, chemo round #1 goes to Oxaliplatin.

My fingers don’t like the keyboard so much ... bear with me. This is the first I noticed that.

Yesterday, Got up took my cal/mag dose (same as night before), got to the infusion room, choose the recliner nearest the emergency exit and told the assistant that I was fine without my armband as I preferred to remain anonymous. Ha!

Fast forward to the fun part. 2 minutes into the Oxi as we were discussing how Bret Farvre needed to shave as he was looking like a homeless wino with his 2 day bread growth, I noticed that my eyes didn’t want to focus then suddenly, my body caught on fire. It started at my toes and went rapidly up and then I started sweating and itching like crazy, throat sore. … “Stop the infusion”! Seems like suddenly 15 medical personnel appeared from nowhere (beam them up Scotty!). Slap on the cuff (blood pressure), make her sit down (seems I was heading for that emergency exit?) “Give her 10mg Benadryl”. I looked over to see I was scaring the poor guy sitting with his wife across the room. I had been told it was her first infusion too and that she was so nervous they had to give her a little something. She was knocked out. Shoot, wish I was knocked out too. Her hubby was standing up watching all the free entertainment in my corner. A couple of minutes after the Benadryl, I was feeling a lot better, could focus my vision and had stopped burning and sweating. I was told we’d wait another 15 minutes and start it again at a slower rate. I just wanted to either get it over with or let me the heck outta here. So, I sat impatiently wiggling my feet and acting like I was reading while the doctor and nurse kept asking me how I was feeling and rechecking my BP. I’m fine now … let’s do this … or not.

Try #2. Rewind and play again! (see above). Holy Sh**! “Well since she’s not having blood pressure problems with her symptoms (117/74 – normal I run about 90/60). Let’s give it another shot (20 more mgs of iv Benadryl) wait another 20 minutes and slow it down some more.” “blah blah blah” Doctor says “Because you have shown such a strong reaction to the Oxaliplatin, you will need to be very careful about not drinking anything with ice or that might be cold once you get home. You may feel some tingling and funny pains in your fingers and toes. Observe any of these symptoms and make sure to inform us of them before your next infusion.”

Try #3 Whew … it went ok. Done, get me outta here. 7:00am to 3:00 pm. Then, starving … haven’t done it in about 12 years … stopped at Wendy’s drive thru. Took a while to figure out what to eat. Got the cheap 99 cent burger (is it less bad for you if it costs less?) ate it on the way home. Feeling ok. Get home and went to drink some lemonade that I had made before and left out so that it wouldn’t be cold. Room temperature … drink … OUCH! Shards of glass down my throat. But, it’s room temperature! Find out can only drink things that are very very warm or hot. Cuts down on hydration because not that much tastes good at that temperature that is good for hydration! Was able to text and send out emails to let everyone know that I survived first round of chemo. Around about 7pm started to feel like I had a bad case of the flu … body aches, even my teeth hurt … didn’t even see the freight train that hit me. Temp 99.8 … don’t need to call the doctor over that. Whew.

This morning got up felt ok other than a headache (damn sleeping pills). Put on my fuzzy slippers to go make coffee … YIKES! Who put needles in the tips of my slippers? Funny joke! Today, still can’t drink room temperature, bit of a sore throat, needles in just the tips of my toes, fingers a little weird but not like the toes.

Can’t wait for disconnect!

Update @ 9:15am starting to feel yucky again ... flu like, a little nauseous, tip of my tongue is tingling. Taking my pump (no name ... I don't want to name something that isn't sticking around and I consider a hassle) and laying down. Have a great day everyone! (I keep thinking it's Saturday ... duh!)
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Comments

  • pepebcn
    pepebcn Member Posts: 6,331 Member
    Wow Lori ,feel so sorry about all this trouble!
    Hope the next becomes more peaceful but glad to see you in such good sense of humor!
    Have a big hug!
  • HollyID
    HollyID Member Posts: 946 Member
    I was thinking about you
    I was thinking about you last night knowing that yesterday was #1 treatment. Oh gosh, I'm so sorry that the Oxaliplatin (I called it "satan-in-a-bag" the entire time) is treating you badly.

    I was hoping you would get through things easier than this. If it makes you feel better, I couldn't drink room temp drinks either. Everything had to be warm or hot. Anything room temp was torture. Having Folfox during the winter sucks too. I mean, walk out in the cold and you suffer, touch anything cold and you suffer. It's a whole barrel full of fun, isn't it? I'm really glad that they got your symptoms under control before anything really awful happened, like you stopped breathing. Love you girl... I'm sending good vibes and anything else I can so you can get through this.
  • maglets
    maglets Member Posts: 2,576 Member
    HollyID said:

    I was thinking about you
    I was thinking about you last night knowing that yesterday was #1 treatment. Oh gosh, I'm so sorry that the Oxaliplatin (I called it "satan-in-a-bag" the entire time) is treating you badly.

    I was hoping you would get through things easier than this. If it makes you feel better, I couldn't drink room temp drinks either. Everything had to be warm or hot. Anything room temp was torture. Having Folfox during the winter sucks too. I mean, walk out in the cold and you suffer, touch anything cold and you suffer. It's a whole barrel full of fun, isn't it? I'm really glad that they got your symptoms under control before anything really awful happened, like you stopped breathing. Love you girl... I'm sending good vibes and anything else I can so you can get through this.

    Lori
    Lori you crack me up....you could write pieces for Saturday Night Live.....

    golly the wonders of oxy world....good girl....you made it

    hugs mags.....
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    pepebcn said:

    Wow Lori ,feel so sorry about all this trouble!
    Hope the next becomes more peaceful but glad to see you in such good sense of humor!
    Have a big hug!

    Pepe
    Thanks for your good wishes and big hug.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    HollyID said:

    I was thinking about you
    I was thinking about you last night knowing that yesterday was #1 treatment. Oh gosh, I'm so sorry that the Oxaliplatin (I called it "satan-in-a-bag" the entire time) is treating you badly.

    I was hoping you would get through things easier than this. If it makes you feel better, I couldn't drink room temp drinks either. Everything had to be warm or hot. Anything room temp was torture. Having Folfox during the winter sucks too. I mean, walk out in the cold and you suffer, touch anything cold and you suffer. It's a whole barrel full of fun, isn't it? I'm really glad that they got your symptoms under control before anything really awful happened, like you stopped breathing. Love you girl... I'm sending good vibes and anything else I can so you can get through this.

    Holly
    Ugh ... I've always been sensitive to drugs and chemicals (even alcohol). A real lightweight. The Oxi? Satan in a bag is a good name for it! Thanks for checking in on me.

    Since you couldn't drink room temp either do you have some suggestions for staying hydrated? I'd like to try and flush some of this stuff out of my system but, I'm sick of hot chocolate and coffee and tea don't hydrate. What did you drink on those days?
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    maglets said:

    Lori
    Lori you crack me up....you could write pieces for Saturday Night Live.....

    golly the wonders of oxy world....good girl....you made it

    hugs mags.....

    Mags
    Yep, I made it! Ha! Can't take me down that easy. Thanks for checking up on me, I'm happy someone finds me amusing.
  • maglets
    maglets Member Posts: 2,576 Member
    Lori-S said:

    Mags
    Yep, I made it! Ha! Can't take me down that easy. Thanks for checking up on me, I'm happy someone finds me amusing.

    hydrate
    Lori It is hard to stay hydrated. I just used hot water and that was so crappy...to tell truth i never found anything that lasted for long. I tried warming any number of drinks but after a day or two I found that they would nauseate me....

    oxy is a devil....that's for sure

    mags
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Bummer
    Sorry that you had such a terrible reaction to the chemo. Hopefully they will do something beforehand next time. Hoping that you feel better soon.

    Kim
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    wow
    Gee Lori I feel guilty that my minor problems with Folfox now thru threatment #2 seems so minor compare to you. I do have sensitivity to cold on my fingers now and come and go nausea but not bad. I'm not even taking meds. Only downside is my platelets are getting low and not coming back up. But I have always had low platelets since radiation four years ago. Be sure to hydrate like crazy to flush out the oxi when you're unplugged. It's done its job no need to linger inside and build up and cause problems. You wont get it all but may be enough to help feel better. For me the worst has been the 3-4 days after being unplugged that is not good but time will tell. I get unplugged tomorrow. Sounds like you need a hug from a very rough start. Hope it gets better. Lou
  • ktlcs
    ktlcs Member Posts: 358
    LOUSWIFT said:

    wow
    Gee Lori I feel guilty that my minor problems with Folfox now thru threatment #2 seems so minor compare to you. I do have sensitivity to cold on my fingers now and come and go nausea but not bad. I'm not even taking meds. Only downside is my platelets are getting low and not coming back up. But I have always had low platelets since radiation four years ago. Be sure to hydrate like crazy to flush out the oxi when you're unplugged. It's done its job no need to linger inside and build up and cause problems. You wont get it all but may be enough to help feel better. For me the worst has been the 3-4 days after being unplugged that is not good but time will tell. I get unplugged tomorrow. Sounds like you need a hug from a very rough start. Hope it gets better. Lou

    So sorry
    That you are feeling badly, but I'll tell a little story about scaring the other patients. Hank was in treatment during the March Madness basketball tournament. Now I enter a pool each year with my biggest goal being that of doing bettr than sny of the men in our office (and I succeed wevery time)! In any evet we always had a private room due to his mobility issues. So we are in a private room, door closed, one of my teams made a bonehead play and I started yelling at the TV. Suddenly there were people everywhere, patients and nurses who were thinking god only knos what by that time. I as sooo embarassed, so at his next infusion I warned everyone I would be yelling at the TV. They gave me a little bell to ring so they could tell the difference between an emergency and me being an idiot!

    Hope that gave you even a small laugh. Feel better soon and hsng in there

    Kathy
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    ktlcs said:

    So sorry
    That you are feeling badly, but I'll tell a little story about scaring the other patients. Hank was in treatment during the March Madness basketball tournament. Now I enter a pool each year with my biggest goal being that of doing bettr than sny of the men in our office (and I succeed wevery time)! In any evet we always had a private room due to his mobility issues. So we are in a private room, door closed, one of my teams made a bonehead play and I started yelling at the TV. Suddenly there were people everywhere, patients and nurses who were thinking god only knos what by that time. I as sooo embarassed, so at his next infusion I warned everyone I would be yelling at the TV. They gave me a little bell to ring so they could tell the difference between an emergency and me being an idiot!

    Hope that gave you even a small laugh. Feel better soon and hsng in there

    Kathy

    WoW Lori
    I hope I NEVER have to do Oxy!!! That sounds like some evil crappola!!! But you made it thru round 1...YAY! Hope the next one treats you better. You take care.

    Jennie
  • jararno
    jararno Member Posts: 186
    Hope you are feeling better!
    Lori,

    Sorry the Oxi got to you so fast! I had a similar reaction on my 11th treatment. Pretty scary! I was quite sick from the first treatments so the Doc cut my meds by about 25%. The benedryl helps, but really knocks you out.

    I actually don't remember what I drank the first few months of treatment as I was very sick and nothing stayed down. I did finally settle on Sierra Mist at room temperature with the bubbles shaken out. I do get decaf hot tea and a glass of water to make my own luke warm tea at resturants. The glass shards reaction is the worst!

    I actually seemed to start getting sick a few hours after the disconnect and then it lasted up to 5 days or more at times! Fatigue ....just getting up for anything is the pits!

    Hope you are feeling OK... Make sure you are hydrated....I wasn't due to nausea. I kept buckets by the bed! ( not cool )

    Keep up the great sense of humor....it helps to get through the days!

    Take Care.

    Barb
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    Lori
    I am so sorry your first time was so painful! I hope the next time is better.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    needles in the tips of your slippers
    The needles in the tips of your slippers feeling will go away soon because you'll no longer be able to feel your feet. I hated Oxy but my cancer is gone so it did the trick. It's been 10 months sense my last chemo treatment and I'm just now starting to get some feeling back into my feet. Now they're hyper sensitive!! My 16 year old son went to pinch my big toe the other day and I almost kicked him in his head!!!

    Life's funny sometimes

    Brooks
  • Jaylo969
    Jaylo969 Member Posts: 824 Member

    needles in the tips of your slippers
    The needles in the tips of your slippers feeling will go away soon because you'll no longer be able to feel your feet. I hated Oxy but my cancer is gone so it did the trick. It's been 10 months sense my last chemo treatment and I'm just now starting to get some feeling back into my feet. Now they're hyper sensitive!! My 16 year old son went to pinch my big toe the other day and I almost kicked him in his head!!!

    Life's funny sometimes

    Brooks

    The first time
    can sometimes be the worse time. Was for me. Didn't know what to expect, scared shirtless,angry, etc., etc.Yep, me & old Oxy got off to a bad start but the next time and the next time was really more bearable.Me and old Oxy made it through 5 rounds and then my onc. introduced me to old Xeloda who had his own set of issues.Instead of glass shards in my throat he gave me multi-colored cracked up feet.

    Lori, all jokes aside I really hope you get to feeling better.Like Brooks said, it can do the trick. I found that drinking through a straw ( small sips ) of room temp or warmer worked for me.

    I never named my pump either. I just called him FU. I did name my newly resected colon Larry. Named after one of the Three Stooges.

    Take care and get plenty of rest.

    -Pat
  • sasjourney
    sasjourney Member Posts: 395 Member
    So sorry it didn't go well
    Well you made it through the first one...keep counting them down. I am sorry to hear about your reaction, hopefully that won't happen again. As far as liquids to drink, try apple juice, lemonade or pineapple juice...all at room temperature. I couldn't stand room temperature water, but I did okay with these others. Have lots of soup or broth...that helps get liquids in you. Hang in there and I'm keeping you in my prayers. You will get through this!!!

    Hugs,
    Sara
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    Love it!
    Love they rhyme, sorry you're having to go through this.

    *hugs*
    Gail
  • okthen
    okthen Member Posts: 232
    Jaylo969 said:

    The first time
    can sometimes be the worse time. Was for me. Didn't know what to expect, scared shirtless,angry, etc., etc.Yep, me & old Oxy got off to a bad start but the next time and the next time was really more bearable.Me and old Oxy made it through 5 rounds and then my onc. introduced me to old Xeloda who had his own set of issues.Instead of glass shards in my throat he gave me multi-colored cracked up feet.

    Lori, all jokes aside I really hope you get to feeling better.Like Brooks said, it can do the trick. I found that drinking through a straw ( small sips ) of room temp or warmer worked for me.

    I never named my pump either. I just called him FU. I did name my newly resected colon Larry. Named after one of the Three Stooges.

    Take care and get plenty of rest.

    -Pat

    Hey Lori! I was thinking
    Hey Lori! I was thinking about you today, hoping things went well, sorry it wasn't better!! Jack just started to feel better today after his disconnect on Friday. He's not had too many issues with cold, nothing unbearable, at least not yet any way.
    Hang in there! (I know you will..)(o:
    Chriss
  • Kenny H.
    Kenny H. Member Posts: 502 Member

    So sorry it didn't go well
    Well you made it through the first one...keep counting them down. I am sorry to hear about your reaction, hopefully that won't happen again. As far as liquids to drink, try apple juice, lemonade or pineapple juice...all at room temperature. I couldn't stand room temperature water, but I did okay with these others. Have lots of soup or broth...that helps get liquids in you. Hang in there and I'm keeping you in my prayers. You will get through this!!!

    Hugs,
    Sara

    Hope its gets easier for
    Hope its gets easier for you. Started my 1st treatment today also. All went ok till I got home forgot & got a glass of COLD juice from frig....YIKES, remembered real quick.
    Was ok at room temp though. No fatigue yet & still getting used to carrying pump around.
    They taking it off thurs.

    They gave me these and was shocked at some of the prices.

    Benadryl 2.00 ins allows .95
    Dicadion 1.60 ins allows .88
    Zofian 20.00 " " 5.40
    5fu 48.00 " " 22.44
    Eloxatin 5,200 " " 3560.00
    Admin ? 275.00 " " 168.87

    Glad I have already met my deductables.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    Thanks everyone
    for all the well wishes and the dashes of humor! I'm sure I will get the benadryl pre-med next time so I won't have the same immediate reaction. Funny but, the 30mg iv didn't even make me tired. Musta been the steroids that kept me up. Of course there's the possibility of lowering the Oxi dose or even discontinuing it so, I'm not too worried. Like a bad relationship, oooops, I need a little space .... or ... I'm done with you!

    Still feeling crappy, flu like, nausea, low grade fever, body aches and sore throat (along with the Oxi needles and stuff). Maybe that's the 5FU already taking it's toll so it won't be so bad after disconnect? I have my fingers crossed that's the case. Always hoping for the best! I wonder if a shot of hot tequila would help??? Ha!