experimentale drug

thennies61
thennies61 Member Posts: 285
in Head and Neck Cancer #1

Hi Went today to the doctors to get my game plan for ratiation treatment.I go back Monday to be fitted for my hockey mask and a week later will start them.5 days a week for 6-7 weeks at 10min per session.I won't need chemo but was asked if I wanted to try thier experimental drug.Will take first dose a week before rads which would push back treatment.Then will take it the same day as radiation and 4 weeks after treatment.Just wondering if anyone else has done this? He said it either works or doesn't as it is like a reverse sun blocker it lets the radiation to where they want to shoot it.The only side effect is that I may break out in a rash that they will help with.

Comments

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #2
    glad they have a plan for you

    glad they have a plan for you and now you know what you will be doing for the next 7 weeks.  it will go quick once you get started.  hope the meds work like they're supposed to, you'll have to let us know.  wishing you luck as you start the tx journey.  we will all be on the sidelines cheering you on!  if you listen, you will hear us.....go thennies61, go thennies61!

    God bless you,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #3
    getting a plan together

    T61,

    Maybe I did and maybe I did not.

    What is the drug?

    Matt

  • HAWVET
    HAWVET Member Posts: 318
    #4
    CivilMatt said:

    getting a plan together

    T61,

    Maybe I did and maybe I did not.

    What is the drug?

    Matt

    Had experimental radiation

    I did not take the drug, but had a new (?) procedure back then called "Direct radiation implant" for my lymph nodes.  They planted these six long needles on the side of my neck and had to be hospitalized for two nights.  I would then be wheeled down to this special room where they connected the needles to some type of machine. 

    I later reviewed all my documents and discovered I had signed a waiver for this procedure.  None of my lymph nodes were removed so I guess that procedure was good.

  • donfoo
    donfoo Member Posts: 1,771 Member
    #5
    Unless you know ...

    Personally, any clinical trial is a testing ground and best left to guinea pigs and mice, although some include human beings too. :-)

    The only time I would consider any experimental therapy is when I am in deep deep doo doo. Basically, when I ask  "what do I got to lose?" and the answer is NOTHING, then let's rock and roll. I would also never substitute any proven therapies for an experimental. If one can take proven treatment and something extra that might help then I would consider that. Just my own opinion. don

     

    oh - one more thing. Ask about the control arm and if there is a placebo track then you really want to think hard about entering a trial that may be a substitute for a known therapy and you get sugar pills. That is  a non-starter in my book.

  • thennies61
    thennies61 Member Posts: 285
    #6
    CivilMatt said:

    getting a plan together

    T61,

    Maybe I did and maybe I did not.

    What is the drug?

    Matt

    The drug is called cetuximab

    The drug is called cetuximab will take i initial dose plus 10 mantenance doses the only side effect is that I could break out in a rash

  • phrannie51
    phrannie51 Member Posts: 4,716
    #7
    Cetuximad is the same as

    Erbitux....and many people on here have had it (Matt for one).....I don't think it's "experimental" any more.....

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #8
    experimrnt with this

    T61,

    I was given 1 loading dose and 7 weekly doses of Erbitux.

     

    When I asked chemo onc  “why not platinum based (std) chemo?”  She said she had seen good

    response in cancer presentation like mine was.

    Her training:

    Medical degree: Beijing Medical University (China)
    Residency training: Weill Medical College of Cornell University 
    Fellowship: Lombardi Comprehensive Cancer Center, Georgetown University Hospital

    So far my combined treatment of surgery, radiation an Erbitux has been successful.  I do not know which of the three killed the most cancer, the lingering cancer cells, the future cancer cells (HPV).   If I had to pick one (for me) I would say rads holds the Aces, but who knows, maybe after surgery it was all gone???????????

    Some cancer patients do everything right and everything goes wrong.  Others do very little and receive a lot.   You are damned if you do and damned if you don’t.

    It is a gamble, you want to give yourself your best shot and one time around if you please.

    Good luck,

    Matt

  • thennies61
    thennies61 Member Posts: 285
    #9
    CivilMatt said:

    experimrnt with this

    T61,

    I was given 1 loading dose and 7 weekly doses of Erbitux.

     

    When I asked chemo onc  “why not platinum based (std) chemo?”  She said she had seen good

    response in cancer presentation like mine was.

    Her training:

    Medical degree: Beijing Medical University (China)
    Residency training: Weill Medical College of Cornell University 
    Fellowship: Lombardi Comprehensive Cancer Center, Georgetown University Hospital

    So far my combined treatment of surgery, radiation an Erbitux has been successful.  I do not know which of the three killed the most cancer, the lingering cancer cells, the future cancer cells (HPV).   If I had to pick one (for me) I would say rads holds the Aces, but who knows, maybe after surgery it was all gone???????????

    Some cancer patients do everything right and everything goes wrong.  Others do very little and receive a lot.   You are damned if you do and damned if you don’t.

    It is a gamble, you want to give yourself your best shot and one time around if you please.

    Good luck,

    Matt

    While talking with the

    While talking with the radiation people they hoping the drug can be used instead of chemo on H&N cancer and to speed up the healing process.But if it does highlight any of the smallest signs of cancer cells for the rads to kill I'm all for it even with the rash it might bring.But they figure it's still 4-5yrs away.

  • hwt
    hwt Member Posts: 2,328 Member
    #10
    thennies61 said:

    While talking with the

    While talking with the radiation people they hoping the drug can be used instead of chemo on H&N cancer and to speed up the healing process.But if it does highlight any of the smallest signs of cancer cells for the rads to kill I'm all for it even with the rash it might bring.But they figure it's still 4-5yrs away.

    I am doing Erbitux now

    Initially, in 2012, I had Cisplatin with my rads. Currently, as recommedned by Mayo Clinic I am doing Erbitux and Taxol. Tolerating them well. I was concerned with the rash but Matt eased my mind when he said his never got bad enough to keep him from going out in public or being embarassed. My rash/acne was mild and pretty much localized to my nose. I use a lightweight make-up by Neutrogena that does a good job of covering it up.  They said if it got too bad they use anti-biotics but so far they haven't been needed. I get my tx on Thursday and have been able to do all of my regular activites. I have extra energy Thurday and Friday from the steroids and usually a down day on Sat or Sunday. Not sick just a very lazy day then back to normal. 

  • KB56
    KB56 Member Posts: 318 Member
    #11
    Erbitux

    Thennies61, it looks like it is Erbitux and I had it as well as Matt.   My Oncologist recommended it because it was much less toxic than older cancer drugs and was very effective against what I had.  It seemed to work well, in combination with the radiation.

    I think the statement "I may break out in a rash" is an understatement.   I had acne so bad on my face I looked like a teenager going through puberty!   I did have it on my back and chest as well but my face was really broken out.   They did give me stuff to help and by the time I was finished with treatment it had pretty much cleared up.   I had the double dose the first day and the 6 more treatments.  My Oncologist said if I broke out really bad that meant it was working well....mine must of really worked well:)

    It worked for me and had far less side effects and damage to the rest of the body than some of the older chemo drugs I read that some have taken on this site... No longer experimental but relatively new (my oncologist said it had been out about 5 years).

    Good Luck,

    Keith

     

  • donfoo
    donfoo Member Posts: 1,771 Member
    #12
    thennies61 said:

    The drug is called cetuximab

    The drug is called cetuximab will take i initial dose plus 10 mantenance doses the only side effect is that I could break out in a rash

    as metioned..

    Erbitux is not experimental, it is as mainstream as cisplatin. The historical consensus is platinum based chemoradition offers the best outcomes. Nearly all trials these days for oral cancer are being done to see what can be done to lessen the toxicity and side effects. None I have read that are phase III or later are being done to improve morbidity for the common cases.

    There are a few here in early trials but most are enrolled as standard of care therapies have failed.

     

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