Hi all,

Today I met with my chemo oncologist and he wants me in the clinical trial for Cetuximab rather than give me Cisplatin.  He explained that Cetuximab is given one week prior to my radiation treatment, during the 7 weeks of prescribed radiation and then for one week following radiation.  I will not receive a port for this, an IV will be used for the weekly doses.

Has anyone else been given this?  

Side note:  this doctor too exclaimed how bad it was that my original surgeon spilled all of the contents of the original lymph node when he removed it.  He (original surgeon) had told me that it was a benign cyst and then found out in the operating room that it was SCC.  So I would also really like to investigate as much as I can what it means to have had this "spillage" of cancer cells in my neck.  He (oncologist today) claimed it is why I needed he neck dissection and also why I would now be considered stage 4 instead of stage 3.  I'm pretty angry with this first surgeon for insisting that it was a benign cyst when all of my symptoms clearly meant it was cancer.  I'm told he should have had a different approach so this spillage would not have occurred. 

As always I am so thankful for your responses,





  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    shell, i'm sorry that

    shell, i'm sorry that happened to you.  I've never heard of "spillage" before.  i think most people here were dx wrong for a month or more.  most of us were tx with antibiotics for a month before tests showed cancer.  i never had chemo of any kind so i can't help there but wanted to say, I'm praying for all to be well for you.

    God bless you,


  • TracyLynn72
    TracyLynn72 Member Posts: 839
    I am certainly no expert,

    but "spillage" was mentioned to me as well.  My tumor was about 4 cm in size.  It was fully intact but had broken through my jawbone on the lower left side.  They wanted (the ENT) to get in there and get the thing OUT of me while it was intact and had not ruptured.  He said it could "open up and spill out" if not gotten out soon enough or if they cut too close to it.  It was explained to me, that if it were to open and spill, I would have to have chemo to kill all of the cells floating around in there.  It did take him two surgeries to get clear margins and so I had to have rads as a result.  The first surgery removed the entire tumor and part of my lower jaw but the bone showed some small cancerous cells so he had to go back in and take more bone. (my entire lower left jaw including the hinge).  I wasn't originally supposed to have anything but one surgery and it ended up being two surgeries, 30 rads, a PEG and a lot longer process than anyone thought.  I'm assuming that is why you are getting chemo treatments in addition to rads?  I was told I didn't need chemo since my lymphnodes were all clear (they removed 25+) and the tumor was removed intact.  I hope that makes sense to you and maybe helps some.  You can do it...we are all here cheering you on!!! But, yes...I'd be angry as heck too!  I'm so sorry that you're going through so much!


    I was originally stage 1, but the size of my tumor moved me to stage 2, and he said I was close to stage 3 due to the location, size, growth, etc...

  • thennies61
    thennies61 Member Posts: 285
    Hi.yes I went thought the

    Hi.yes I went thought the same treatment.That week before is most likely the worst part.They give you an overdose and I was sick for about 5 days.It felt like the flu .After that it wasn't bad.I took the drug in morning then right after went to radiation.I did break out with some acne but they will give you everything you did.And afterward RANG the BELL

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    how we begin


    Cetuximab or Erbitux as we call it here has been used here by a few of us.  When I asked about its use over Cisplatin the chemo onc said she had good results on presentations like mine was.

    Technically it doesn’t have as long a track record for equal comparison, but for many it aids the radiation similarly.

    As for the spill, I need more information on such occurrence before discomfort kicks in.  That is why they radiate a field.

    Good luck,


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

    It is hard not to be angry at some of the dumb things doctor do to us when we are unknowing about our condition. I am like you my first doctor did not correctly treat my NPC he had to call other doctors to find out what he needed to do, but he never told me that. The my second C doctor who I had a lot of faith in turned out to be no better, it was only by God’s blessing I was able to get into MD Anderson in Houston with doctors who knew what they were doing. I sit back and wonder how different my life would be if only I went to MDA first. It was hard a first but I have put all that anger behind me and go on with my life the way it is. I find my true friends and family all still love me just the way I am. Even at Church when I have to eat and must make a lot of noise blending my food to put in my PEG tube, they just say Oh Tim must be hungry again. We can’t change the past all we have is today and maybe tomorrow in our hand, and I thank God for everyday I wake up to see the blessing I have for today. Lettering go of the anger I had was the best healing I could have giving by broke body. I am now 8 years passed the time my doctors gave me to live; I have a lot of very bad side effects but still find a way to enjoy my life. I hope and pray you have the right doctors now who care and are willing to go a little extra to help you to be a survivor for many years to come.


    Tim Hondo

  • Shell_7801
    Shell_7801 Member Posts: 71
    CivilMatt said:

    how we begin


    Cetuximab or Erbitux as we call it here has been used here by a few of us.  When I asked about its use over Cisplatin the chemo onc said she had good results on presentations like mine was.

    Technically it doesn’t have as long a track record for equal comparison, but for many it aids the radiation similarly.

    As for the spill, I need more information on such occurrence before discomfort kicks in.  That is why they radiate a field.

    Good luck,


    Side effects

    Thanks guys.  

    I read that it causes a lot of side effects in our skin.  So I'm just planning for all of the worst, blisters, acne, cracks, burns, etc.  If I know what to expect then there is no reason to complain about it.  I also read that they will keep a very close eye on you with the first dose to see if you have the allergic reaction to it.  

    My goal going forward is to accomplish nothing more than making it through each day with a thankful heart.  There is always something to be thankful for.

    Today as always I am thankful for this site and all of you.



  • phrannie51
    phrannie51 Member Posts: 4,716
    I'm always taken back

    a little when I hear Cetuximab or Erbitux used in the same sentence with "clinical trial".....so many have had it rather than Cisplatin with good results.  From what I've heard, tho....it is far easier on the body in general.  I don't know if I'd want to skip getting a Port, tho....it isn't only chemo that gets delivered.....you might need to get hydrated, there's transfusions if a person needs them, blood draws up the wahzoo.....lots of "needles" in the cancer business.  Having a Port meant, hooking me up and giving or taking whatever was needed, without the search for a willing vein.  It made everything easy peasy.

    Longtermsurvivor (Pat) might chime in on the spilled lymph node.....I'm sure that the best case scenerio would be to get it out encapsuled, without any leakage.  You're getting that whole area radiated, tho.....so maybe it doesn't make much difference. 

    Take good care of your neck during rads.....there are more than one way to skin that cat.....many used Aquafor...for me that was too greasy, like Vasoline......I used Calendula cream on top of a layer of Aloe.  Just remember whatever you use, you must wash it off before rad treatment, and then slather up for the other 23 hours of the day. :)


  • KB56
    KB56 Member Posts: 318 Member

    Shell, from what I've read on this site, and my experience with Erbitux. you'll be glad you got that vs the Cisplatin as the side effects are less severe for the most part.  The biggiest side effect is a skin rash and acne like you are a teenager going through puberty!      I tolerated it pretty well and had 7 treatments and the first one was the worse as it seemed to be the largest dose.   After that i did ok with it and even the skin rash/acne pretty much cleared up before i finished.

    I know you're frustrated but you'll have this behind you before you know it.  Like Matt said, that radiate a pretty big area to cover the "spillage" and stuff too small to see.  Stay positive, attack this head on and you'll be finished before Thanksgiving.   


    Good luck and all the best,


  • Jeff2159
    Jeff2159 Member Posts: 108

    I have been on Erbitux since this past February every tuesday except for one week. The rash/acne is manageable but it is a pain in the rear sometimes. I've ruined my pillow and pillowcase due to blood stains and i can no longer wear light colored shirts for the same reason. For me the acne is white heads and they easily pop and I'm a picker. the acne pops itself sometimes and can leave a blood stain. It may be harder on me getting it every week and also being hairy does not help as all this is is pores getting clogged. I inquired about cisplatin but can't do it due to my renal issues as it is hard on the kidneys. You might get a little tired from the Erbitux and maybe lip sores but the side effects are alot less than the cisplatin and carbo platin. As for spillage, have no knowledge but I had my neck disection done prior to my tongue cancer excision  and my surgeon said its done that way to avoid the potential of spreading cancer cells

    good luck