Standard Chemo or Protocol (Cetuximab=Erbitax)?

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  • cureitall66
    cureitall66 Member Posts: 913
    #22
    amy_h414 said:

    Hpv
    What kind of biopsy was performed? My husband had two FNAs (fine needle aspiration) that were neg for HPV. His Rad Onc did not believe those results and ordered a core biopsy. I guess that means more tissue was taken for testing. It was a much more involved procedure than the FNA. The core biopsy was positive for HPV.

    Interesting...
    It was a fine needle aspiration done by original ENT. Once we decided to go the U of M hospital he got a new ENT...who was relying on the results from previous ENT. The nurse told us that the sample (assuming from original biopsy)was already in the works for checking for HPV. Hoping the second time around will secure it.

    Now that your mentioning "core" biopsy, I'm wondering if they will or should we ask for that to be done.

    You know, sometimes we just don't know when to stop and let the doctors handle this kind of thing or keep pressing because of our gut feeling.

    I guess if it comes back again as HPV negative and they go on with treatment, and it is actually positive, it just means the outcome will be more favorable. It would just be nice to know it ahead of time. :)

    Very frustrated with the running in circles and hoops to jump through.

    Thank you so much for sharing this with us!!
  • Billie67
    Billie67 Member Posts: 898
    #23
    cureitall66 said:

    Yep....and we're frustrated already....
    So many obstacles before we can even get started. And the doctors land you this research study that we KNOW NOTHING about. Where are the statistics? But, since our options were diminished since I posted this earlier( HPV came back negative) this protocol is no longer available to us....unless the second biopsy is reversed (2 weeks to wait for that). We aren't sold on this drug...

    I have only two words to say.....CANCER SUCKS!!

    Negative
    I was HPV negative too and still had erbitux. It's hard to say why the Dr's pick one drug over the other.
    I agree with Matt, point blank ask the dr what he would do if were him or his wife, mother, daughter.
    Good luck on this oh so confusing decision.
    Billie
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #24
    amy_h414 said:

    Hpv
    Double post, oops

    Choices.....
    I was "asked" if I would like chemo with my rads ( it was like asking
    if I wanted a salad with my meal). Anyway I asked do I need it and
    he said NO but he wanted to offer it as it helps the tumor responds better
    to the rads, once again I asked do I need it he said NO the outcome
    will still be same. So I opted NOT to have chemo, I just had rads.

    T2/T3 0N 0M tonsil HPV+ ( 3.8cm Tumor on the left )

    God bless
    Tonsil dad,

    Dan.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #25
    blackswampboy said:

    of course
    nobody said they don't all have side-effects, lol.
    I detailed my reaction to erbitux, and I believe Tim had a particularly horrible reaction--well documented on these boards.

    shall we list all of cisplatin's risks too?

    regardless, my oncologist said the same thing that cureitall's apparently did: given my dx and general good health, I would probably have an easier time with erbitux. that was my rational behind hoping for erbitux, and I can't complain about the choice.

    As always, your mileage may vary.

    Cisplatin
    To list a few;

    •blood and bone marrow problems
    •abnormal laboratory test results
    •allergic reactions
    •anaphylactic reactions
    •cerebrovascular problems
    •ear or hearing problems
    •eye or eyesight problems
    •faster heart rate
    •heart attack
    •heart problems
    •injection site problems such as cellulitis, fibrosis or necrosis these may happen if Cisplatin leaks out of the vein or if it is not injected properly
    •kidney problems
    •loss of appetite
    •loss of taste
    •lowered blood pressure
    •male infertility - this may be permanent
    •metabolic problems
    •nausea
    •neuropathy of the extremities
    •oedema of the face
    •paraesthesiae
    •seizures
    •skin rash or rashes
    •stroke
    •tetany
    •tinnitus
    •urticaria
    •vomiting
    •wheezing

    Other than the above possibilities, it usually does a heck of a job on kicking cancer butt...LOL.

    JG
  • hwt
    hwt Member Posts: 2,328 Member
    #26
    amy_h414 said:

    Hpv
    Double post, oops

    No choice
    I was not given a choice and had Cisplatin. The first tx kicked my a** so the ONC cut me to half does weekly and that worked much better for me. I did not receive my last dose. I have had a CT scan w/contrast that was NED but won't have PET til October.
  • davidkay
    davidkay Member Posts: 5
    #27
    Skiffin16 said:

    Cisplatin
    To list a few;

    •blood and bone marrow problems
    •abnormal laboratory test results
    •allergic reactions
    •anaphylactic reactions
    •cerebrovascular problems
    •ear or hearing problems
    •eye or eyesight problems
    •faster heart rate
    •heart attack
    •heart problems
    •injection site problems such as cellulitis, fibrosis or necrosis these may happen if Cisplatin leaks out of the vein or if it is not injected properly
    •kidney problems
    •loss of appetite
    •loss of taste
    •lowered blood pressure
    •male infertility - this may be permanent
    •metabolic problems
    •nausea
    •neuropathy of the extremities
    •oedema of the face
    •paraesthesiae
    •seizures
    •skin rash or rashes
    •stroke
    •tetany
    •tinnitus
    •urticaria
    •vomiting
    •wheezing

    Other than the above possibilities, it usually does a heck of a job on kicking cancer butt...LOL.

    JG

    Erbitux - 2nd time around
    6 weeks into 2nd round of weekly Cetuximab (Erbitux). Pretty nasty stuff (for me, lots of skin sores and the like). BUT IT WORKS!

    Had to cut the first course short due to an infected port. Still, it got me to NED anyway, and I hope it can get me there again...longer-term.

    David
  • amy_h414
    amy_h414 Member Posts: 98
    #28
    cureitall66 said:

    Interesting...
    It was a fine needle aspiration done by original ENT. Once we decided to go the U of M hospital he got a new ENT...who was relying on the results from previous ENT. The nurse told us that the sample (assuming from original biopsy)was already in the works for checking for HPV. Hoping the second time around will secure it.

    Now that your mentioning "core" biopsy, I'm wondering if they will or should we ask for that to be done.

    You know, sometimes we just don't know when to stop and let the doctors handle this kind of thing or keep pressing because of our gut feeling.

    I guess if it comes back again as HPV negative and they go on with treatment, and it is actually positive, it just means the outcome will be more favorable. It would just be nice to know it ahead of time. :)

    Very frustrated with the running in circles and hoops to jump through.

    Thank you so much for sharing this with us!!

    Core biopsy
    You could always request that one be ordered. But regardless of the result, the treatment is the same. It's hard not knowing. I wanted that test to be positive and when it wasn't, twice, it was very distressing. I cried when my husband told me the core biopsy was positive.

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