help- looking for answers on reaction

kdkjoshi
kdkjoshi Member Posts: 7
edited March 2014 in Colorectal Cancer #1
Hi everyone,
I am on my 5th infusion of oxaliplatin and 5FU. I keep having extra side effects.
Severe side pain days 4-7, no explination- Burning and blistering feet, blistered head and the normal ones- cold reactions, and and feet tingling and numbness....

Trying to figure this last one out as I just spent the day in the ER with no real results.

My last infusion was 11 days ago, I am expected to go for my next one on monday.
Yesterday several friends said that my face was a bit rounder then the day before, I didnt pay any attention to it. I got home from work and was doing housework when I looked down and had the oddest sensation. my neck came up around my chin. fast trip to the mirror and I had linebacker neck. It went from my jaw stright down. Now I have a little double chin, but this was quite the suprise. Then I noticed that the root of my tonge felt odd and heavy. No breathing issues, so I took some benedryl with the plan to go to the doc this morning.

Off to see the onc nurse as I was having a hard time explaining this odd reaction. She had no idea what to do and consulted the onc dr. who said that there is no way this is a reaction to chemo. By this time I was having trouble swallowing, and saliva was starting to build im my mouth because of this.

So I went to the ER. as this had to be caused by something. A day ruling out a clot, a tumor blocking the heart veins. Much more benedryl and steriods so now Im sleepy and awake and jittery. still with the swollen neck and heavy tonge, extra drooling when I try and sleep and no answers.

The ER doc suggest that I must be allergic to one of my chemo drugs. Im thinking the Oxaliplatin as it has also caused an instant rash and small blisters during infusion. I have benedryl as part of my pre meds starting with the first infusion.

Been researching high and low and cant find anything that gives me any more ideas. So do any of you have any? Help.

I would love to go back to my onc with something, and I would love to look normal again.

Comments

  • mommyof2kds
    mommyof2kds Member Posts: 519
    #2
    I had a reaction to
    I had a reaction to oxaliplatin, broke out in I guess was hives and felt a little weird, cough etc, I guess like it was getting harder to breathe. They gave me solumedrol and benadryl and watched me for a bit till they let me go home. That was my last dose of that drug. It is a nasty drug. I didn't have alot of the symptoms you are having, but I do know that some people on this board may have, but the swelling neck thing sounds like a allergic reaction to me.. Did your breathing get harder or anything when it happened. My doc would give me dosed of calcium and magnesium infusions before that infusion and it helped greatly with side effects... Hope this helps.. Petrina
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #3
    sorry no answers just good wishes
    I did a quick search. No answers either, but the list
    of side effects is chilling and to be honest what they convey and what I have heard in practice is so different.
    I would love to know what percentage of people who start the
    planned 12 treatments of folfox6 actually get the recommended dose for the full course.
    I would guess around 50%. My friend here just dropped OXALI after 4 treatments with nerve problems.

    Your ONC sounded so definite "no way" is so absolute.

    Keep us posted, I am doing 3rd treatment folfox in 2 days.

    goodluck
    Pete
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #4
    Hi!
    I'm sorry to hear of these problems. I've had lots of reactions to lots of different drugs including the oxy. I haven't had that sort of reaction with the oxy but, that definitely sounds like a drug reaction. Do note that if you are receiving dexamethasone, you may after time get a rounder face ... steroids are know to cause this and it's usually called a moon face. But, with the tongue/throat/neck swelling I would definitely lend towards a reaction and make sure they figure out which drug it is. Maybe ask the onc if they can try leaving the oxy out next round? Some people don't develope reactions until later in treatment. Wishing you all the best with this.
  • Nana b
    Nana b Member Posts: 3,030 Member
    #5
    Lori-S said:

    Hi!
    I'm sorry to hear of these problems. I've had lots of reactions to lots of different drugs including the oxy. I haven't had that sort of reaction with the oxy but, that definitely sounds like a drug reaction. Do note that if you are receiving dexamethasone, you may after time get a rounder face ... steroids are know to cause this and it's usually called a moon face. But, with the tongue/throat/neck swelling I would definitely lend towards a reaction and make sure they figure out which drug it is. Maybe ask the onc if they can try leaving the oxy out next round? Some people don't develope reactions until later in treatment. Wishing you all the best with this.

    a thought
    Shingles on head??
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Opinion
    If it were me I'd get a second opinion, if your doctor is so flippant about this reaction then I'd fire them and get a new one. This is not normal and you should not take this response you got lightly. You should not be searching out answers for something that is happening to you on the internet, that is why you have a doctor. I'd be calling your oncologist in the morning and DEMANDING that something be done. Don't settle for such a non responsive answer. There is something wrong and you should find out what. Sorry for my rant, but hate when doctors are so passive. Hope you get to the bottom of this soon.

    Kim
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #7
    Annabelle41415 said:

    Opinion
    If it were me I'd get a second opinion, if your doctor is so flippant about this reaction then I'd fire them and get a new one. This is not normal and you should not take this response you got lightly. You should not be searching out answers for something that is happening to you on the internet, that is why you have a doctor. I'd be calling your oncologist in the morning and DEMANDING that something be done. Don't settle for such a non responsive answer. There is something wrong and you should find out what. Sorry for my rant, but hate when doctors are so passive. Hope you get to the bottom of this soon.

    Kim

    I agree with Kim! My Onc
    I agree with Kim! My Onc Docs are so understanding. They were mad at me for not calling that I had a cold. My Onc Docs want to know every side effect, and how I am doing if anything changes.
    mike
  • TMac52
    TMac52 Member Posts: 352
    #8
    I just started the same
    I just started the same treatment today. already had a bad reaction to the cold hands just opening the car door (I live in Boston its gonna be a long winter) then drinking cold water ouch!!!! I hope your doctor solves this issue for you please keep me posted as i'm a bit nervous about what im up against.
    Tom
  • LOUSWIFT
    LOUSWIFT Member Posts: 371 Member
    #9
    Folfox
    Every time I do an infusion some side effects I've had like hand and foot syndrome; stomach cramps (I should call them abdominal cramps);sensitivity to cold; fatique; nausea and diarreha. These I expect every time and sometimes they show up with additional side effects and somtimes they don't. New one this time my face instantly freezing in a cold wind or my lips and mouth freezing when I drink luke-warm tea. My point you never know with Folfox thus the adventure. But also keep in mind as Lori points out we get pills on top of pills to deal with side effects from the folfox and these new drugs have their own side effects. Take Care Lou

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