Plan in place???

hwt
hwt Member Posts: 2,328 Member
in Head and Neck Cancer #1

Well, I thought I had a plan. Saw the new ONC yesterday and had two choices (drug combos) suggested by Mayo. I opted to lose hair and have acne in place of nausea, mouth sores and diarrhea. My decision was for Cetuximab (aka Erbitux) and Paclitaxel (aka Taxol). I just went to get the paperwork so I could tell you what I was getting and I read that I could have nausea, mouth sores and diarrhea. Did I trade off losing my hair and having acne for nothing? I know others have had this same tx. and would appreciate your input.  

I go on the 8th for Hohn catheter and CT then start tx 01/09.

 

Interesting tidbit. Paclitaxel is known to give allergic reations to people in Midwest. These reactions have never been seen in Calif or New York or many other states. No one has ever identified why. Includes significant drop in blood pressure and difficulty breathing. They are trained to address it, should it happen. If it happens, it will be within first hour of 1st dose.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    Erbitux user

    Candi,

    I had Erbitux with a side of rads i.e. 1 loading dose and 7 (once weekly) doses.  I did get the acne over my upper torso and face. While the acne was prevalent, I was never embarrassed to go out in public.  Mine never really itched, but I was asked numerous times if it did.  My eye lashes and eye brow hair grew rapidly, to the point where it bugged me while driving.  I only got nauseated during the loading dose, but never during regular treatments.  My fingers cracked and I lost one toe nail.  I tried  some lotions on my hands, but preferred liquid band-aid to seal the cracks.

    If you want to see severe reactions to Erbitux go to Tim6003 and check out his picture.  Mine was nothing like his. 

    Good luck, best always,

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    CivilMatt said:

    Erbitux user

    Candi,

    I had Erbitux with a side of rads i.e. 1 loading dose and 7 (once weekly) doses.  I did get the acne over my upper torso and face. While the acne was prevalent, I was never embarrassed to go out in public.  Mine never really itched, but I was asked numerous times if it did.  My eye lashes and eye brow hair grew rapidly, to the point where it bugged me while driving.  I only got nauseated during the loading dose, but never during regular treatments.  My fingers cracked and I lost one toe nail.  I tried  some lotions on my hands, but preferred liquid band-aid to seal the cracks.

    If you want to see severe reactions to Erbitux go to Tim6003 and check out his picture.  Mine was nothing like his. 

    Good luck, best always,

    Matt

    Thanks

    Thanks Matt...that eases my mind a bit. Maybe better if I don't look at Tim's pics until after I'm done or I might back peddleSurprised

  • donfoo
    donfoo Member Posts: 1,773 Member
    #4
    Interesting tidbit.

    Interesting tidbit. Paclitaxel is known to give allergic reations to people in Midwest. These reactions have never been seen in Calif or New York or many other states.

    I read a study that found this side effect had to do with some sort of "progressive" gene. Wink

  • katenorwood
    katenorwood Member Posts: 1,912
    #5
    Hey Candi !

    Danged if we do danged if we don't.  I'm so happy you have a plan in place.  And I hope the side effects are a least very minimal.  Keep us posted on how things go.  You are a true testiment of strenghth and determination to kick Jacks Buttocks !  Hugs sent !  Katie

  • hwt
    hwt Member Posts: 2,328 Member
    #6
    donfoo said:

    Interesting tidbit.

    Interesting tidbit. Paclitaxel is known to give allergic reations to people in Midwest. These reactions have never been seen in Calif or New York or many other states.

    I read a study that found this side effect had to do with some sort of "progressive" gene. Wink

    Don

    Thanks, hoping I don't hold that gene!

  • donfoo
    donfoo Member Posts: 1,773 Member
    #7
    PLEASE check this out


    Earlier I posted in jest about the very unusual difference in Erbitux side effects based on where you live. There is, in fact, potential that the lyme tick causes the problem with Erbitux, not Taxol. Here is one link to get you started. If nothing else. make sure to contact the oncologist and discuss if this may impact you. It is known to be a much greater concern for those living in the Midwest such as Missouri.  Link to Erbitux/lyme disease

    This is something serious to consider. A member at OCF lost her husband just a few months ago due to extreme reaction to Erbitux. Alpha-gal is the antigen people are allergic to and related to the lyme tick. There is a blood test to check for potential allergic reaction before starting the therapy.

    Please be safe and make 100% sure you are comfortable that the concern is fully addressed. Fortunately, you have time.

    Don

  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    It’s the air

     

    When I can’t figure out what’s the different is l ways it’s the in the air. That is strange for the allergic to be so local.

     

    Wishing the best for you

    Hondo

  • hwt
    hwt Member Posts: 2,328 Member
    #9
    donfoo said:

    PLEASE check this out


    Earlier I posted in jest about the very unusual difference in Erbitux side effects based on where you live. There is, in fact, potential that the lyme tick causes the problem with Erbitux, not Taxol. Here is one link to get you started. If nothing else. make sure to contact the oncologist and discuss if this may impact you. It is known to be a much greater concern for those living in the Midwest such as Missouri.  Link to Erbitux/lyme disease

    This is something serious to consider. A member at OCF lost her husband just a few months ago due to extreme reaction to Erbitux. Alpha-gal is the antigen people are allergic to and related to the lyme tick. There is a blood test to check for potential allergic reaction before starting the therapy.

    Please be safe and make 100% sure you are comfortable that the concern is fully addressed. Fortunately, you have time.

    Don

    Don

    Wow, you are a wealth of information...thanks for taking the time to research. I even had the drug wrong, looks like it's the Erbitux then not the other drug. You know how it is with these doctor appts. so much to take in. The ONC seemed well versed on it and mentioned testing during the 1st hour. Apparently, if something is going to happen, it is during that 1st hour of 1st tx. he said never at home. Again, appreciate your research and concern.

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #10
    Taxol - Taxotere

    I had Taxotere, as one of the four chemos I received... No problems that I knbow of..., other than it might have effected my sense of humor...

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #11
    erbitux tic, tic, tick

    Candi,

    That is what  the “loading dose” and questionnaire are for, to help determine and recognize possible side effects or the chance for them.  My first dose and observational time was around 5 hours.

    Even though I have hunted a lot and spent time in known tick areas I have never been bitten.

    It is all poison, they only mean to give us just enough.

    Matt

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