Cetuximab What Would You Do?

Sonja.K
Sonja.K Member Posts: 79 Member

I had my surgery to remove my tumor, lymph nodes and titanium jaw replacement on 8/11.  I was scheduled to start radiation treatment on 9/8/14.  When I went to have the mask made my radiologist observed that my planned dental extractions did not happen during surgery and needed to get done.  Had it done and postponed radiation start to 10/6.  I called earlier this week because no one had notified me about coming in for the Cetuximab this week (first dose the week before radiation).  From what I'm understanding they have not heard back whether or not I was accepted into the clinical trial and they want me to delay radiation until we hear.  I don't want to delay any longer, I want to start, get done two weeks before Thanksgiving and have time to recover for the holidays and not be in the middle of treatment.   There is no chemo scheduled,  docs say not necessary or beneficial with my cancer.  I told them that I did not want to delay.  Now I have appointment tomorrow with the team.  I was just wondering what people think.  Delay for the Cetuximab?   Forget it and go ahead?   Thank you! :

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,721 Member
    follow the plan and react as needed

    Sonja,

    The first dose or “loading dose” of Erbitux was for observation of reaction to the meds.  Due to a series of unfortunate events my 1  week before rads became 3 weeks.  I do not know how much your timeline or selection to Erbitux or not is a viable option.  I imagine they will work with you, but be aware your given timeline may be unrealistic once your side effects are known.

    Wishing you the best,

    Matt

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    the delay in treatment in order for you to receive

    cetuximab first is more about maintainin thier protocal than it is about your cancer treatment.  Another way of saying this is that there is no evidence it will matter one way or the other in your cure rate, but it does matter for them to be able to properly register you.    I read your previous post on this, but didn't respond as I considered the advice you got from all my friends is excellent.  It is bothersome to me, in your case, that so much of this has revolved around this protocal.   Your actual cancer situation isn't that complicated, many of us have been there, and for them to imply to you there is something mysterious in any fashion about this cetuximab thing is pretty unnecessary.

    You have no obligation  to their research protocal.  You have only an obligation to yourself.  The delays, while not medically very important, tend to emotionally wear you down.   Make an easy choice for yourself, and get the treatment going.

     

    best to you

     

    pat

     

  • Sonja.K
    Sonja.K Member Posts: 79 Member

    the delay in treatment in order for you to receive

    cetuximab first is more about maintainin thier protocal than it is about your cancer treatment.  Another way of saying this is that there is no evidence it will matter one way or the other in your cure rate, but it does matter for them to be able to properly register you.    I read your previous post on this, but didn't respond as I considered the advice you got from all my friends is excellent.  It is bothersome to me, in your case, that so much of this has revolved around this protocal.   Your actual cancer situation isn't that complicated, many of us have been there, and for them to imply to you there is something mysterious in any fashion about this cetuximab thing is pretty unnecessary.

    You have no obligation  to their research protocal.  You have only an obligation to yourself.  The delays, while not medically very important, tend to emotionally wear you down.   Make an easy choice for yourself, and get the treatment going.

     

    best to you

     

    pat

     

    Thank you Pat and Matt

    I opted out of the clinical study, thank you for sharing your thoughts and giving me the confidence to move ahead with what I wanted.  

  • PJ47
    PJ47 Member Posts: 376
    Don't see why you cannot have Certubimax and get on with Rads

    Without being in a clinical trial if that is what the hold up.  Like others said, that is not an unusual treatment for your cancer.  Tell them to get a move on.  It is good that you have had time to heal after surgery and after the tooth extractions so try not to worry.  

    PJ

  • donfoo
    donfoo Member Posts: 1,771 Member
    Sonja.K said:

    Thank you Pat and Matt

    I opted out of the clinical study, thank you for sharing your thoughts and giving me the confidence to move ahead with what I wanted.  

    good for you

    Glad to hear you are moving forward and tore up the guinea pig label. 

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi Sonja

     

    I know you want to jump in and get started, I too was like you, I just wanted this thing out of my head. But don’t be too fast; give the doctors time to make sure they are giving you the right treatment you need for your type of C. I found out I had NPC two weeks before Thanksgiving in 2002 and all the plans we had went from full speed to Stop. I hope and pray that they will soon give you the call with just the right treatment you need and that you get started as soon as possible.

    Tim Hondo

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Sonja.K said:

    Thank you Pat and Matt

    I opted out of the clinical study, thank you for sharing your thoughts and giving me the confidence to move ahead with what I wanted.  

    sonja, good for you for

    sonja, good for you for making a firm decision.  this is YOUR life and you have that right.  i just want to wish you the best and let you know that we will all be here for you as you go thru tx.  please keep us posted.  we'll be on the sidelines waiting to hear from you.

    God bless you,

    dj

  • Sonja.K
    Sonja.K Member Posts: 79 Member
    Hondo said:

    Hi Sonja

     

    I know you want to jump in and get started, I too was like you, I just wanted this thing out of my head. But don’t be too fast; give the doctors time to make sure they are giving you the right treatment you need for your type of C. I found out I had NPC two weeks before Thanksgiving in 2002 and all the plans we had went from full speed to Stop. I hope and pray that they will soon give you the call with just the right treatment you need and that you get started as soon as possible.

    Tim Hondo

    Thanks Tim

    Thanks Tim.  I had a really good meeting with my ENT, surgeon and radiologist yesterday.   I feel positive moving forward.  

     

  • wmc
    wmc Member Posts: 1,804
    Sonja.K said:

    Thanks Tim

    Thanks Tim.  I had a really good meeting with my ENT, surgeon and radiologist yesterday.   I feel positive moving forward.  

     

    Good news....

    That's good to hear. Stay Positive..........:] Laughing

    Bill

  • Sonja.K
    Sonja.K Member Posts: 79 Member

    sonja, good for you for

    sonja, good for you for making a firm decision.  this is YOUR life and you have that right.  i just want to wish you the best and let you know that we will all be here for you as you go thru tx.  please keep us posted.  we'll be on the sidelines waiting to hear from you.

    God bless you,

    dj

    Your Puppy is adorable!

    Your puppy is adorable!   We also have a black Cocker Spaniel named Zooey who was one year old in May.  She is a sweet little girl who does keep us busy.  Thank you for your kind words.   You make it easier to get through this .  ~Sonja

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    Sonja.K said:

    Your Puppy is adorable!

    Your puppy is adorable!   We also have a black Cocker Spaniel named Zooey who was one year old in May.  She is a sweet little girl who does keep us busy.  Thank you for your kind words.   You make it easier to get through this .  ~Sonja

    thank you sonja.  dogs

    thank you sonja.  dogs absolutely make life better :0)  my dog's name is sara.  i really like the name zooey.  you should post a pic of her, we'd love to see it.

    God bless you,

    dj