Erbitux / Vectibix 0% effective??

glimmerofhope
glimmerofhope Member Posts: 53 Member
edited March 2014 in Colorectal Cancer #1
Recent information indicates that for approximately 43% of us with metastatic colon cancer, all the EGFR inhibitor drugs such as Vectibix (panitumumab) and Erbitux (cetuximab) have ZERO effectiveness.

The 43% are those that have colorectal tumors with KRAS mutations. This information was first detailed in the August 1, 2007 issue of the Journal of Clinical Oncology in a paper by Dr. Jose Baselga.

Dr Baselga presented his findings at the 14th European Cancer Conference in late September, 2007.

Basically, he recommended “that all oncologists ask their pathology laboratories to carry out testing on tumor samples to assess KRAS mutation status and the results of these tests should be used to decide whether or not to use an EGFR inhibitor.”

This makes sense to me.

I have taken both of the mentioned EGFR inhibitor drugs and saw no apparent results. I assume that I am one of the 43% that has the KRAS mutation and receive zero benefit. I stopped taking these drugs about 5 months ago.

I only wish I had known this about 9 months ago so I wouldn't have lost precious time taking these drugs and suffered the indignity of being treated like a leper in public due to the severe acne.

I would love to hear feedback from those who are taking or considering taking EGFR inhibitor drugs. IS YOUR ONCOLOGIST AWARE OF THIS?

With that said, I applaud the drug companies such as Amgen and Bristol-Myers Squibb for their work on all anti-angiogenic drugs….Avastin, the VEGF inhibitor drug, along with low doses of 5FU has been the MOST EFFECTIVE and LEAST TOXIC of all the treatments that I have taken.

I believe that these anti-angiogenic drugs are a good first step toward keeping this hideous disease under control.
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Comments

  • apache4
    apache4 Member Posts: 272 Member
    Thanks for the information. I am currently NED, but my onc did mention trying Erbitux if it came back within six months. So, if I need to, I will definitely have this checked out before using it, if that time shoudl come. Actually, I am not planning on it and staying super positive. Thanks, again.
  • kerry
    kerry Member Posts: 1,313 Member
    My doctor at MD Anderson had my tumor samples tested before putting me on Erbitux or Vectibix and found that I also fall in the 43% of people it does not effect. Thank goodness he tested before subjecting me to the side effects.

    I also responded well to 5FU and Avastin, however, due to developing a couple of blood clots the last time I was on Avastin, the doctor is hesitant to put me back on it.

    So I'm stuck with Oxaliplatin + Xeloda for the time being.

    Thank goodness for all the new drugs we have and the new ones coming down the pipeline. Rumors tell me there will be another drug announced in the near future. Hooray....

    Kerry
  • jenalynet
    jenalynet Member Posts: 361 Member
    Hi,
    Thanks very much for posting this information because I am Stage 4 and this could be helpful to me in the future. Thanks, Audrey.
  • Monicaemilia
    Monicaemilia Member Posts: 455 Member
    I have had a few doctors and nurses tell me that if you have a rash or acne it is a good sign that the Erbitux is working. But from what you are saying, that cannot be true. Right? Monica
  • dash4
    dash4 Member Posts: 303 Member

    I have had a few doctors and nurses tell me that if you have a rash or acne it is a good sign that the Erbitux is working. But from what you are saying, that cannot be true. Right? Monica

    Hello,
    My husband has been on erbitux for over 2 years now. They did test him before he started treatment. I believe the insurance companies actually require you to be tested.
    Recently, they ahve proven that the worse the rash-the more effective it is. That seems to be true for my husband. His rash was so bad he was hospitalized with a high fever and yes-he resembled a leper--that waas his description-it was horrible.BUT-I must say that with the meds he is on now--he continues with the erbitux and looks as normal as anyone--still some rash on his chest, but absolutely nothing like what he endured before. So, if you are on erbitux, the rash can be controlled. If anyone wants more info-let me know.
    Mary Kay
  • glimmerofhope
    glimmerofhope Member Posts: 53 Member

    I have had a few doctors and nurses tell me that if you have a rash or acne it is a good sign that the Erbitux is working. But from what you are saying, that cannot be true. Right? Monica

    I have been told that if you don't break out, then you almost certainly won't respond to the EGFR inhibitor.

    I don't believe the converse of this is true, that if you break out badly, it is working.....

    I had horrendous acne with just a half dose of Vectibix (panitumumab). My face had about 100 white heads and it hurt just laying my face on a pillow.

    Yet, it didn't appear to be effective at all for me.

    I understand that it does help some people though.
  • glimmerofhope
    glimmerofhope Member Posts: 53 Member
    dash4 said:

    Hello,
    My husband has been on erbitux for over 2 years now. They did test him before he started treatment. I believe the insurance companies actually require you to be tested.
    Recently, they ahve proven that the worse the rash-the more effective it is. That seems to be true for my husband. His rash was so bad he was hospitalized with a high fever and yes-he resembled a leper--that waas his description-it was horrible.BUT-I must say that with the meds he is on now--he continues with the erbitux and looks as normal as anyone--still some rash on his chest, but absolutely nothing like what he endured before. So, if you are on erbitux, the rash can be controlled. If anyone wants more info-let me know.
    Mary Kay

    According to my oncologist, before Erbitux or Vectibix was given, a test was ran on my tumor tissue to determine if it expressed a protein called an epidermal growth factor receptor (EGFR).

    The FDA notes that approximately 70% of all colorectal carcinomas have positive findings for EGFR.

    The KRAS mutation test is a separate test that I understand insurance won't even pay for at this time.
  • glimmerofhope
    glimmerofhope Member Posts: 53 Member
    kerry said:

    My doctor at MD Anderson had my tumor samples tested before putting me on Erbitux or Vectibix and found that I also fall in the 43% of people it does not effect. Thank goodness he tested before subjecting me to the side effects.

    I also responded well to 5FU and Avastin, however, due to developing a couple of blood clots the last time I was on Avastin, the doctor is hesitant to put me back on it.

    So I'm stuck with Oxaliplatin + Xeloda for the time being.

    Thank goodness for all the new drugs we have and the new ones coming down the pipeline. Rumors tell me there will be another drug announced in the near future. Hooray....

    Kerry

    Are you sure we are talking about the same test?

    My oncologist said that before he gave me Vectibix, he ran a test on my tumor tissue to determine if it expressed a protein called an epidermal growth factor receptor (EGFR)

    The FDA notes that approximately 70% of all colorectal carcinomas have positive findings for EGFR.

    This KRAS mutation is a separate test that I understand insurance won't even pay for at this time.

    If your doctor did do the KRAS test, when did he do this?

    What new drugs have you heard are coming down the pipeline? I'm ready for a new one.

    I'm sorry you are stuck on oxaliplatin now. I have taken the oxaliplatin and it's pretty toxic.

    Thanks,
    Tony
  • oneagleswings
    oneagleswings Member Posts: 425 Member
    sorry to disagree but my husband progressed rapidly on avastin and got an extra 6 months of life with progression free status on erbitux..wish we in Canada had the luxury of getting vectibex...
    Bev
  • dash4
    dash4 Member Posts: 303 Member

    I have been told that if you don't break out, then you almost certainly won't respond to the EGFR inhibitor.

    I don't believe the converse of this is true, that if you break out badly, it is working.....

    I had horrendous acne with just a half dose of Vectibix (panitumumab). My face had about 100 white heads and it hurt just laying my face on a pillow.

    Yet, it didn't appear to be effective at all for me.

    I understand that it does help some people though.

    I don't know where to tell you to find it, but there is documented proof now that there is a correlation between the severity of the rash on erbitux and the degree of its effectiveness. They "thought" this was true before, but now it has been proven in a study.
    You are right-my husband was tested for the EGFR factor...I will have to ask about the KRAS mutation test. Thanks for the info.
    Mary Kay
  • kerry
    kerry Member Posts: 1,313 Member

    Are you sure we are talking about the same test?

    My oncologist said that before he gave me Vectibix, he ran a test on my tumor tissue to determine if it expressed a protein called an epidermal growth factor receptor (EGFR)

    The FDA notes that approximately 70% of all colorectal carcinomas have positive findings for EGFR.

    This KRAS mutation is a separate test that I understand insurance won't even pay for at this time.

    If your doctor did do the KRAS test, when did he do this?

    What new drugs have you heard are coming down the pipeline? I'm ready for a new one.

    I'm sorry you are stuck on oxaliplatin now. I have taken the oxaliplatin and it's pretty toxic.

    Thanks,
    Tony

    Tony,

    I was tested for the EGFR and came back negative. With a negative response, insurance won't pay for Erbitux or Vectibix.

    New drugs down the pipeline - I don't know their names yet. Lots of trials going on though. I know MD Anderson has a trial going on and so does the CTRC (cancer therapy and research center) in San Antonio. Lots of hype.

    Oxaliplatin is really knocking my down this time around. Yuck.

    Kerry
  • glimmerofhope
    glimmerofhope Member Posts: 53 Member

    sorry to disagree but my husband progressed rapidly on avastin and got an extra 6 months of life with progression free status on erbitux..wish we in Canada had the luxury of getting vectibex...
    Bev

    That's interesting. I know one guy who responded well on the erbitux like your husband did. The three (including myself) in our colon cancer support group that have been stage 4 for 5-7 years (if I make another month it will be 5 years) have responded well to Avastin and not Erbitux....but that is just a small group of three.

    Please understand that I didn't mean that Erbitux and Vectibix was 0% effective for everyone....just the 43% with the KRAS mutation. I feel certain that your husband doesn't have the KRAS mutation.

    I understand that there are 7 known "pathways" for colon cancer to get new blood supplies for growth.....The VEGF (Avastin) and the EGFR (erbitux/vectibix) each block one pathway...So that leaves 5 other pathways untouched so the cancer eventually finds a way around the current drugs....

    This stuff is no wimpy Lance Armstrong testicular cancer that can actually be CURED with cancer drugs.

    Sorry you can't get Vectibix in Canada....All the literature on the Avastin says that it works for only about 11 months...but I have been on it for about 2.5 years, getting off once in a while due to low platelets. It seems to be losing it's effectiveness, but it still appears to be helping slow it down.

    I haven't read a lot on this site for a while. Is your husband still on Erbitux? It may still be effective to some extent if it worked that well for 6 months.

    I am currently using ammonium tetrathiomolybdate (TM) that chelates copper from the body and thus limits how much blood vessel growth is available for the cancer (in theory). In addition, I take 65 grams of vitamin C intravenously once or twice each week.

    Not sure how much each helps, but I'm trying SOMETHING and plan to go down swinging.

    If you are interested in learning more about the TM, I can refer you to a good, concise web site...I have taken this stuff for about 2.5 years and there is no apparent side effects and it doesn't make you feel bad at all.

    The conventional FDA approved poisons don't seem to be helping much anymore.
  • alta29
    alta29 Member Posts: 435 Member
    I asked my onco yesterday..he told me that before the insurance Co. did make it mandatory to makes these test for erbitux...now they don't because it was proved that it wasn't 100 % acurrate ( Like cea's).They did not test me and I am currently on it.....I just hope is true that the more severe the better, cause I have the rash in my ears !!
  • glimmerofhope
    glimmerofhope Member Posts: 53 Member
    alta29 said:

    I asked my onco yesterday..he told me that before the insurance Co. did make it mandatory to makes these test for erbitux...now they don't because it was proved that it wasn't 100 % acurrate ( Like cea's).They did not test me and I am currently on it.....I just hope is true that the more severe the better, cause I have the rash in my ears !!

    My oncologist said that before he gave me Vectibix, he ran a test on my tumor tissue to determine if it expressed a protein called an epidermal growth factor receptor (EGFR)

    The FDA notes that approximately 70% of all colorectal carcinomas have positive findings for EGFR.

    This KRAS mutation is a separate test that I understand insurance won't even pay for at this time. Since there is a 43% chance that this drug is totally useless to you (if your cancer has the KRAS mutation) I would get the KRAS test to make sure I wasn't losing valuable time and experiencing all the acne for nothing.

    I would bet that your oncologist isn't even aware of the KRAS test since this is new info. You might want to get him to read his August 1, 2007 issue of the Journal of Clinical Oncology concerning the paper by Dr. Jose Baselga. He may dismiss this, but I don't take NO for an answer. I made it clear to my oncologists early on that I am the doctor and they are just consultants.....
    With all due respect to doctors, I have yet to meet one that is as interested in my case as I am.

    I believe the test can be ran on your colon cancer tissue for about $300-$350.

    If you are among the 57% that don't have the KRAS mutation, then the erbitix will probably work well for you.
  • jobcoach
    jobcoach Member Posts: 1
    Erbitux Rash
    My wife had 2 infusions of erbitux. Had a bad reaction on the second. Also developed the horrible rash on face, scalp and back. The onc took her off Erbitux will start her on vectibix tomorrow. He gave her antibiotics and cream for rash. Any idea how long it takes to get rid of the rash? It has been 2 weeks.
    Onc says Vestibix has less severe side effects. Can anyone confirm? Will the rash come back with Vestibix? Is Vestibix as effective as Erbitux?
    Thank you in advance

    Jim
  • Bear23
    Bear23 Member Posts: 84
    jobcoach said:

    Erbitux Rash
    My wife had 2 infusions of erbitux. Had a bad reaction on the second. Also developed the horrible rash on face, scalp and back. The onc took her off Erbitux will start her on vectibix tomorrow. He gave her antibiotics and cream for rash. Any idea how long it takes to get rid of the rash? It has been 2 weeks.
    Onc says Vestibix has less severe side effects. Can anyone confirm? Will the rash come back with Vestibix? Is Vestibix as effective as Erbitux?
    Thank you in advance

    Jim

    Jim
    I am on Vectibix. The

    Jim
    I am on Vectibix. The difference between Erbitux is that Vectibix is fully humanized whereas Erbitux is part mouse. Therefor less chance of side effects during infusion. I have been on Vectibix since July. I got a horrible rash, was put on antibiotics for a month and gel for the rash. The severity of the rash got better with time but I still have a rash. It is now bearable and livable. OH, my dosage was lowered to 75% too.

    Hope this helps

    Valerie
  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    jobcoach said:

    Erbitux Rash
    My wife had 2 infusions of erbitux. Had a bad reaction on the second. Also developed the horrible rash on face, scalp and back. The onc took her off Erbitux will start her on vectibix tomorrow. He gave her antibiotics and cream for rash. Any idea how long it takes to get rid of the rash? It has been 2 weeks.
    Onc says Vestibix has less severe side effects. Can anyone confirm? Will the rash come back with Vestibix? Is Vestibix as effective as Erbitux?
    Thank you in advance

    Jim

    Jobcoach
    Welcome to the board, and sorry you have to be here.

    You might want to try starting a new thread, rather than drudging up one that was posted in 2007, particularly one with such a scary title.

    Sorry, but erbitux is next on my list of chemo's to take, so I have no experience with the rash.
  • Buckwirth said:

    Jobcoach
    Welcome to the board, and sorry you have to be here.

    You might want to try starting a new thread, rather than drudging up one that was posted in 2007, particularly one with such a scary title.

    Sorry, but erbitux is next on my list of chemo's to take, so I have no experience with the rash.

    This comment has been removed by the Moderator
  • kanniek1
    kanniek1 Member Posts: 2
    Bear23 said:

    Jim
    I am on Vectibix. The

    Jim
    I am on Vectibix. The difference between Erbitux is that Vectibix is fully humanized whereas Erbitux is part mouse. Therefor less chance of side effects during infusion. I have been on Vectibix since July. I got a horrible rash, was put on antibiotics for a month and gel for the rash. The severity of the rash got better with time but I still have a rash. It is now bearable and livable. OH, my dosage was lowered to 75% too.

    Hope this helps

    Valerie

    Severity of rash
    Hi Valerie
    I just started Vetibex a week ago and don't have any symptoms of rash yet, how long did it take for you to get a rash? What other treatments have you been on.
    Thanks Diane
  • janie1
    janie1 Member Posts: 753 Member
    dash4 said:

    Hello,
    My husband has been on erbitux for over 2 years now. They did test him before he started treatment. I believe the insurance companies actually require you to be tested.
    Recently, they ahve proven that the worse the rash-the more effective it is. That seems to be true for my husband. His rash was so bad he was hospitalized with a high fever and yes-he resembled a leper--that waas his description-it was horrible.BUT-I must say that with the meds he is on now--he continues with the erbitux and looks as normal as anyone--still some rash on his chest, but absolutely nothing like what he endured before. So, if you are on erbitux, the rash can be controlled. If anyone wants more info-let me know.
    Mary Kay

    more information
    I'm new. Not sure how to PM yet. Would like to know more about managing Erbitux skin rash. Can you PM me? Thanks. I am so scared.