question erbitux

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Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Hi,
Is Erbitux only available if you're in a trial? Has any one on this site not been in a study an still been given Erbitux?

Thanks.
Kathleen

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  • amcp
    amcp Member Posts: 251 Member
    #2
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    Erbitux
    My husband Frank was given Erbitux and he was not in a trial. It was given to him at his oncologist locally. He got the rash that is a common side effect.
    Anna
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #3
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    amcp said:

    Erbitux
    My husband Frank was given Erbitux and he was not in a trial. It was given to him at his oncologist locally. He got the rash that is a common side effect.
    Anna

    thanks anna
    Thanks Anna. I know that in a study you may or may not have the drug so we want to make sure that **** has Erbitux if it would help him.
    That is good info.
    Kathleen
  • kimby
    kimby Member Posts: 797
    #4
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    Erbitux
    I was on Erbitux this past fall with folfiri and I was not in a trial at that time. Be sure that your husband is KRAS tested prior to being given Erbitux. It is becoming pretty standard to test but some onc are still behind the times with that. Also, he should begin treatment for the rash before it appears as the studies show it will be less severe.

    HTH,

    Kimby
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
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    yes
    Hi Kathleen,
    Yes, Erbitux is available without being in a study. I do caution you to read up on some of the new studies on Erbitux recently first (C3 news) and discuss potential side effects and benefits. Also, make sure **** is k-ras tested first before they even consider putting him on it, because it would be of no benefit to him if he's found to have the k-ras mutation (which approx 40% of all colorectal cancer patients have- I do).

    Best wishes,
    Lisa
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #6
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    thanks
    Thanks everyone. We are waiting to get the results back from ****'s KRAS testing. We should have it this week. We have learned so much from all of you.
    Another question is what about sun exposure when you are on Erbitux? How about salt water?
    Kathleen
  • Shayenne
    Shayenne Member Posts: 2,342
    #7
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    Kathleen808 said:

    thanks
    Thanks everyone. We are waiting to get the results back from ****'s KRAS testing. We should have it this week. We have learned so much from all of you.
    Another question is what about sun exposure when you are on Erbitux? How about salt water?
    Kathleen

    Yes...
    I was asked to be in the study with Erbitux and Avastin now, that they are conducting for a Phase 3 to know ALL side effects, and the day I was supposed to go see the clinics lady to sign the consent forms, my daughter read this article on msnbc.com I posted it here:

    http://csn.cancer.org/node/165189

    and the article was saying that those drugs were making the colon cancer worse.

    http://www.msnbc.msn.com/id/29019005/

    So I didn't know what to think anymore, and my husband even preferred me not to try those drugs, just go with the FOLFIRI.
  • msccolon
    msccolon Member Posts: 1,917 Member
    #8
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    Erbitux and trials
    Keep in mind that final trials are actually conducted in the local oncology offices. They just aren't the kind that are blind as to whether a patient is getting the drug or not. You are given the drug and the oncologist reports back side effects, tolerance, etc. Perhaps this is what you are talking about?
    mary
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #9
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    msccolon said:

    Erbitux and trials
    Keep in mind that final trials are actually conducted in the local oncology offices. They just aren't the kind that are blind as to whether a patient is getting the drug or not. You are given the drug and the oncologist reports back side effects, tolerance, etc. Perhaps this is what you are talking about?
    mary

    that makes sense
    OK. That makes sense Mary. The oncologist at USC mentioned the drug and then a study. But it does make sense the way you described it.
    Thanks.
    Kathleen
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #10
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    Kathleen808 said:

    that makes sense
    OK. That makes sense Mary. The oncologist at USC mentioned the drug and then a study. But it does make sense the way you described it.
    Thanks.
    Kathleen

    hi Kathleen,

    another research site for Erbitux: www.cancerdecisions.org

    peace, emily
  • pamalama
    pamalama Member Posts: 27
    #11
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    Erbitux
    Kathleen,
    My husband is a stage 3 and on the trial for erbitux with folfox. He's about to start treatment 3 of folfox and 5 of the erbitux this week. He really hasn't been to affected by the folfox other than fatigue following pump takedown. The erbitux rash however has affected him. I strongly suggest if **** is to receive it to start the antibiotic before he starts treatment Jerry waited til after treatment 2 to start the antibiotic. The rash got pretty bad but it does peak about week 3-4 but you must stay on the antibiotic during treatment according to his oncologist. Yes the erbitux does make you sensitive to the sun as does the antibiotic (tetracycline type). We live in sunny Florida and my hubby is an avid runner and we have 3 kids (11,9 and 4) so we are outside a lot. He's using spf60 sunscreen and wearing a hat and sunglasses. Because he is in the trial the erbitux($5000) per infusion and oxiplatin ($5000) per infusion are covered by the study also if **** has the right type of KRAS gene once he's in the trial he will be randomized by a computer that will decide whether he will receive the erbitux or not. Hope this info helps and best of luck.

    Pam
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #12
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    2bhealed said:

    hi Kathleen,

    another research site for Erbitux: www.cancerdecisions.org

    peace, emily

    great site
    Thanks Emily great site. **** and I have been trying to figure out the whole antioxident thing while he is on chemo. I think we still have a lot to learn. While he waits to start chemo in a few weeks, he is consuming a lot of antioxidents. Our juicer should be in Hawaii when we arrive home tomorrow. We will start juicing and have him drinking green tea. He will also go on fish oil, vit D and vit b6 and multivitamin.
    Then we need to decide what to do when he starts chemo. So much to decide.
    Thanks for your ideas.
    Aloha,
    Kathleen
  • fez1
    fez1 Member Posts: 47
    #13
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    Kathleen808 said:

    that makes sense
    OK. That makes sense Mary. The oncologist at USC mentioned the drug and then a study. But it does make sense the way you described it.
    Thanks.
    Kathleen

    erbitux- not on study
    Kathleen,

    My husband started Erbitux with Irinotecan in October '08. His tumor was K-RAS tested first. He had no success with either Folfox with Avastin or Folfiri. He has had good first response shown by reduction i all tumors in the Dec. 8th CT scan. He gets his second CT scan on Feb 10. We'll see then how if it's still effective. BUT- this is not a study. As far a sun exposure goes, you have to be careful and use sunscreen, hats to cover your face etc. if you will be out in the sun because you will sunburn more easily. Salt water will not hurt or aggravate the rash- just keep sunscreen on and moisturize well if the salt water dries your face out. Sounds like a vacation may be coming up! Take care.

    Carol
  • 2bhealed
    2bhealed Member Posts: 2,064 Member
    #14
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    Kathleen808 said:

    great site
    Thanks Emily great site. **** and I have been trying to figure out the whole antioxident thing while he is on chemo. I think we still have a lot to learn. While he waits to start chemo in a few weeks, he is consuming a lot of antioxidents. Our juicer should be in Hawaii when we arrive home tomorrow. We will start juicing and have him drinking green tea. He will also go on fish oil, vit D and vit b6 and multivitamin.
    Then we need to decide what to do when he starts chemo. So much to decide.
    Thanks for your ideas.
    Aloha,
    Kathleen

    Supplements
    Hi Kathleen,

    Have you read Beating Cancer With Nutrition by Patrick Quillin? He has such wonderful advice about supplements during cancer and chemo.

    In my supplement arsenal was also:

    selenium
    fractionated citrus pectin
    melatonin
    folic acid
    Vit E
    EPA
    Butyrate
    Vit C (10,000mg/day!!)
    Milk thistle
    Probiotics
    Calcium Citrate (better absorbed than carbonate)

    This list was compiled for me by my Naturopathic Doctor.

    You didn't ask but I thought I would just throw this out at you for comparables.

    peace, emily

    ps. I can give more details if you so desire. :-)
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #15
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    pamalama said:

    Erbitux
    Kathleen,
    My husband is a stage 3 and on the trial for erbitux with folfox. He's about to start treatment 3 of folfox and 5 of the erbitux this week. He really hasn't been to affected by the folfox other than fatigue following pump takedown. The erbitux rash however has affected him. I strongly suggest if **** is to receive it to start the antibiotic before he starts treatment Jerry waited til after treatment 2 to start the antibiotic. The rash got pretty bad but it does peak about week 3-4 but you must stay on the antibiotic during treatment according to his oncologist. Yes the erbitux does make you sensitive to the sun as does the antibiotic (tetracycline type). We live in sunny Florida and my hubby is an avid runner and we have 3 kids (11,9 and 4) so we are outside a lot. He's using spf60 sunscreen and wearing a hat and sunglasses. Because he is in the trial the erbitux($5000) per infusion and oxiplatin ($5000) per infusion are covered by the study also if **** has the right type of KRAS gene once he's in the trial he will be randomized by a computer that will decide whether he will receive the erbitux or not. Hope this info helps and best of luck.

    Pam

    your family sounds like ours
    Hi Pam,
    Our families sound similar. We have 2 duaghters, 12 and 14. We live in Hawaii and we like to surf, hike, run and be outdoors all the time. We are pretty good about sunscreen but it sounds like we will need an even stronger one. Also, hats, etc.. sounds right. Thanks for the advice on the antibiotic. Does your husband take a probiotic with that antibiotic? Also, is your husband in a study? If so I guess you only know that he really has the drug because he got the rash. Is that right? Also, if a person is not in the study, will insurance pick up the cost?
    Thanks for the info.
    Aloha,
    Kathleen
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #16
    Options
    2bhealed said:

    Supplements
    Hi Kathleen,

    Have you read Beating Cancer With Nutrition by Patrick Quillin? He has such wonderful advice about supplements during cancer and chemo.

    In my supplement arsenal was also:

    selenium
    fractionated citrus pectin
    melatonin
    folic acid
    Vit E
    EPA
    Butyrate
    Vit C (10,000mg/day!!)
    Milk thistle
    Probiotics
    Calcium Citrate (better absorbed than carbonate)

    This list was compiled for me by my Naturopathic Doctor.

    You didn't ask but I thought I would just throw this out at you for comparables.

    peace, emily

    ps. I can give more details if you so desire. :-)

    great info
    Thanks Emily! Great info!
    Also, your pup sure is beautiful!
    Aloha,
    Kathleen
  • fez1
    fez1 Member Posts: 47
    #17
    Options
    Kathleen808 said:

    your family sounds like ours
    Hi Pam,
    Our families sound similar. We have 2 duaghters, 12 and 14. We live in Hawaii and we like to surf, hike, run and be outdoors all the time. We are pretty good about sunscreen but it sounds like we will need an even stronger one. Also, hats, etc.. sounds right. Thanks for the advice on the antibiotic. Does your husband take a probiotic with that antibiotic? Also, is your husband in a study? If so I guess you only know that he really has the drug because he got the rash. Is that right? Also, if a person is not in the study, will insurance pick up the cost?
    Thanks for the info.
    Aloha,
    Kathleen

    insurance payment
    Kathleen- yes our insurance pays for my husband's Erbitux. The antibiotic is minocycline and will not cause issues as other stronger antibiotics will. You can be on it for long periods of time with no side effects. It helped my husband's rash so much. Get on it ASAP. I'm not sure- who is being treated, you or your husband?

    Carol
  • pamalama
    pamalama Member Posts: 27
    #18
    Options
    Kathleen808 said:

    your family sounds like ours
    Hi Pam,
    Our families sound similar. We have 2 duaghters, 12 and 14. We live in Hawaii and we like to surf, hike, run and be outdoors all the time. We are pretty good about sunscreen but it sounds like we will need an even stronger one. Also, hats, etc.. sounds right. Thanks for the advice on the antibiotic. Does your husband take a probiotic with that antibiotic? Also, is your husband in a study? If so I guess you only know that he really has the drug because he got the rash. Is that right? Also, if a person is not in the study, will insurance pick up the cost?
    Thanks for the info.
    Aloha,
    Kathleen

    Yes
    Hi Kathleen,
    Yes we are. We have 2 daughters 11 and 4 and one son 9. We are an active family as well. He does drink Kefir every day which is a drinkable yogurty probiotic drink. He also juices every day usually carrots,kale,beets 1 or 2 large glasses. He is an avid runner like I said last year he came in 2nd in our local marathon with a 2:51 time. He hasn't been able to run as much since surgery but he's working his way back. He qualified for the Boston Marathon in April but I don't think he'll be able to doit. I notice the more active and the more exercise he does the better he feels both physically and mentally. This is tough but with exercise and good attitude and LOTS of prayer we will get through this and so will you. He is on the study and once he was randomized they told us he would be receiving the erbitux it is not a blind study you will know whether or not you will receive the drug before treatment starts. Hope this helps. P.S. I am sending you an invite if you have any more questions. Best of luck.

    Pam
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    #19
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    pamalama said:

    Yes
    Hi Kathleen,
    Yes we are. We have 2 daughters 11 and 4 and one son 9. We are an active family as well. He does drink Kefir every day which is a drinkable yogurty probiotic drink. He also juices every day usually carrots,kale,beets 1 or 2 large glasses. He is an avid runner like I said last year he came in 2nd in our local marathon with a 2:51 time. He hasn't been able to run as much since surgery but he's working his way back. He qualified for the Boston Marathon in April but I don't think he'll be able to doit. I notice the more active and the more exercise he does the better he feels both physically and mentally. This is tough but with exercise and good attitude and LOTS of prayer we will get through this and so will you. He is on the study and once he was randomized they told us he would be receiving the erbitux it is not a blind study you will know whether or not you will receive the drug before treatment starts. Hope this helps. P.S. I am sending you an invite if you have any more questions. Best of luck.

    Pam

    post disappeared
    Hi,
    I posted last night and it disappeared in cyber space. Thanks for all the info. Pam, I'm not sure what an invite is but I will try to figure it out. :)
    I do have some questions, I'll send soon.
    Thanks a bunch.
    Kathleen
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #20
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    Kathleen808 said:

    post disappeared
    Hi,
    I posted last night and it disappeared in cyber space. Thanks for all the info. Pam, I'm not sure what an invite is but I will try to figure it out. :)
    I do have some questions, I'll send soon.
    Thanks a bunch.
    Kathleen

    My input
    I've been on Erbitux for about 3 years (wow, can't believe it in a way) and it has kept my tumors stable or has shrunk them. I did start with the antibiotic minocycline and it has helped a lot with the rash. I still get split fingertips.
    Best of luck for you
    -phil
  • fez1
    fez1 Member Posts: 47
    #21
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    PhillieG said:

    My input
    I've been on Erbitux for about 3 years (wow, can't believe it in a way) and it has kept my tumors stable or has shrunk them. I did start with the antibiotic minocycline and it has helped a lot with the rash. I still get split fingertips.
    Best of luck for you
    -phil

    2nd Erbitux CT not so good
    Hi everyone,
    I posted a little while ago about Erbitux. My husband, Michael had a great CT scan the first time- all tumors had shrunk pretty significantly. The second one was not good. He had 2 new liver tumors. We haven't seen the oncologist yet. Michael has been in Florida visiting his father and brother. He had to get some warmth and needed to get away. But- there's no reason to continue with Erbitux. We have an appointment with an interventional radiologist on March 4 to be considered for SIRT. I'm praying that he says that Michael is a candidate for the procedure. Phil- I'm in awe of your success with Erbitix. Best of luck to you.

    Carol

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