KRAS - Wild!

robinvan
robinvan Member Posts: 1,012
edited March 2014 in Colorectal Cancer #1
OK! I'm a 5-year veteran with this Stage 4 Colon Cancer POS and moving on to new territory. I have just learned that my KRAS is "wild" as opposed to "mutant" which makes me eligible for Erbitux. I guess that is next. I must say I am delighted to hear this. It has brought tears to my eyes to have another option at hand!!

Over the last few years I've heard a little about the rash side effects and other things but like so much it has mostly gone by me. Funny how we don't retain much of that which isn't immediately relevant to the situation! So now that it is relevant... HELP!

Any words of wisdom from those who have had this treatment... words of hope... cautions... All appreciated.
Phil, I know that you particularly have worked with this for a long time, with good results. Any advice, thoughts, or direction, you could share would be most valued. PM me if you like.

Background for newbies...
Aug '04 DX Stg 4 with Liver Mets
Colon Rx Liver Rx 6mo FOLFOX/FOLFIRI
Dec '07 Recurrence Liver Met
RFA (open) 4 mo Xeloda/Irin/Avastin
Sept '09 Local Recurrence Sacrum/Rectum
15 treatments Radiation

With new hope... Rob; in Vancouver
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Comments

  • Patteee
    Patteee Member Posts: 945
    #2
    yeah for new hope!
    your
    yeah for new hope!
    your tears brought tears to my eyes
    strange how that works

    I can't give you any info on this drug
    but I know you are in good hands with others who can

    now *breathe!
  • sfmarie
    sfmarie Member Posts: 602
    #3
    Great
    That you have this new option. It worked very well for my sister, but she had a recurrence while off it waiting for surgery. She had the horrible rash, which mainly bothered her scalp and she had an acne like rash on her face. It was manageable, more itchy than anything. I think it knocked her on her feet with tiredness, but after a day was back. Good luck! Prayers for you Robinvan.
  • AceSFO
    AceSFO Member Posts: 229
    #4
    Yay!
    Hey Rob! That's great news!! I hope it works, and there's always the other EGFR drug, Vectibix (or something like that - I can't remember exactly).

    Keep us posted, and here's hoping it's a success!

    Adrian
  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    #5
    Hi Rob,it's good to know
    Hi Rob,it's good to know that you have more options.I just want to let you know you are in my prayers and hope all your treatment goes well.Best luck to you with everything.
  • just4Brooks
    just4Brooks Member Posts: 980 Member
    #6
    Good to hear!!
    Good to hear about another option for you. I wish you all the luck and I think of you often. Give them kids a BIG hug from me (from one dad with cancer to another).


    Brooks
  • Mike49
    Mike49 Member Posts: 261
    #7
    Rob I am on cetuximab (erbitux) now
    Rob, I am this on my second cycle of this treatment. I made the mistake of going out in the sun and got a bad burn. I have an acne like rash over my face and chest and scalp. I feel pretty good otherwise, I am taking it along with FOLFIRI. The rumor is if you get the rash its working, but I don't know that they have proven that.

    Welcome to the wild crowd.
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #8
    Great
    That's fabulous, Robin! I love when hope unexpectedly walks in the door.

    *hugs*
    Gail
  • robinvan
    robinvan Member Posts: 1,012
    #9
    Patteee said:

    yeah for new hope!
    your
    yeah for new hope!
    your tears brought tears to my eyes
    strange how that works

    I can't give you any info on this drug
    but I know you are in good hands with others who can

    now *breathe!

    Thanks Patteee
    We call that compassion... strange indeed!

    Breathing... Rob; in Vancouver

    “The whole idea of compassion is based on a keen awareness of the interdependence of all living beings, which are all part of one another, and all involved in one another.”
    Thomas Merton
  • robinvan
    robinvan Member Posts: 1,012
    #10
    just4Brooks said:

    Good to hear!!
    Good to hear about another option for you. I wish you all the luck and I think of you often. Give them kids a BIG hug from me (from one dad with cancer to another).


    Brooks

    Thanks All!
    Marie, Adrian, FFML, and Brooks. Always good to have an option. I imagine I'll be a couple of weeks before I start. I'm still suffering some of the radiation side-effects and I have a PET Scan pending before I see the Onc again.

    I'll keep folks posted.

    Rob; in Vancouver
  • robinvan
    robinvan Member Posts: 1,012
    #11
    Mike49 said:

    Rob I am on cetuximab (erbitux) now
    Rob, I am this on my second cycle of this treatment. I made the mistake of going out in the sun and got a bad burn. I have an acne like rash over my face and chest and scalp. I feel pretty good otherwise, I am taking it along with FOLFIRI. The rumor is if you get the rash its working, but I don't know that they have proven that.

    Welcome to the wild crowd.

    Sunshine! Not a problem here!

    One good thing about Vancouver winters. So the rash starts pretty quick. Are you doing anything for it?

    If you get the rash it is working. OK..

    Thanks for the info Mike.

    Rob; in Vancouver
  • robinvan
    robinvan Member Posts: 1,012
    #12
    tootsie1 said:

    Great
    That's fabulous, Robin! I love when hope unexpectedly walks in the door.

    *hugs*
    Gail

    Hope!
    Yes, it is a good thing to have on this journey. Thanks Gail.

    Be well... Rob; in Vancouver
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    #13
    robinvan said:

    Sunshine! Not a problem here!

    One good thing about Vancouver winters. So the rash starts pretty quick. Are you doing anything for it?

    If you get the rash it is working. OK..

    Thanks for the info Mike.

    Rob; in Vancouver

    Great news that you can try
    Great news that you can try something new!

    I did a lot of research on it before deciding if I wanted to sign up for a clinical trial (turned out to be a moot point once they said they can't determine if I am stage IV or stage III for certain because the trial was for III only, and then my test came back KRAS mutant anyway).

    There is a pill and a creme you can use for the rash. My onc's office has had a lot of good luck using those with the patients on Erbitux. Ask for this in advance. They say it works best if you use it as a preventative instead of waiting till it gets bad.

    Here is a link with good info on it:
    http://www.chemocare.com/bio/erbitux.asp

    I hope you can get on this and that it helps you!
  • pf78248
    pf78248 Member Posts: 209
    #14
    Erbitux
    Hi Rob,

    I am thrilled to hear you have another option! That's always great news. My husband David, stage 3C dx 4-08, now stage 4 dx 1-09 with a single met to the liver, was on Erbitux.

    He was part of a clinical trial that combined FOLFOX with Erbitux for stage 3 cancer patients. Unfortunately he later was tested and had the KRAS mutation so the Erbitux was discontinued once it made no sense to take it. He had the rash with what looked like acne on his face, some in the scalp and lots on his trunk. He's been off it a little over a year and still breaks out at times on his chest.

    The good news is he tolerated it very well with not a lot of pain. He was given an antibiotic Minocycline to treat the side effects and also used Metrogel religiously. It's a prescription ointment that sure seemed to help. One thing to remember is that the rash doesn't mean it is working or all those KRAS mutation folks would not get the rash. They do!

    My best wishes to you and here's hoping that Erbitus is just the thing! All of you who are going through this nasty cancer have my highest respect. I am in awe of the bravery and support you all have on this board.

    Priscilla
  • robinvan
    robinvan Member Posts: 1,012
    #15
    Kathryn_in_MN said:

    Great news that you can try
    Great news that you can try something new!

    I did a lot of research on it before deciding if I wanted to sign up for a clinical trial (turned out to be a moot point once they said they can't determine if I am stage IV or stage III for certain because the trial was for III only, and then my test came back KRAS mutant anyway).

    There is a pill and a creme you can use for the rash. My onc's office has had a lot of good luck using those with the patients on Erbitux. Ask for this in advance. They say it works best if you use it as a preventative instead of waiting till it gets bad.

    Here is a link with good info on it:
    http://www.chemocare.com/bio/erbitux.asp

    I hope you can get on this and that it helps you!

    Thanks Kathryn
    Good info and I'll follow up on that link!

    Rob; in Vancouver
  • robinvan
    robinvan Member Posts: 1,012
    #16
    pf78248 said:

    Erbitux
    Hi Rob,

    I am thrilled to hear you have another option! That's always great news. My husband David, stage 3C dx 4-08, now stage 4 dx 1-09 with a single met to the liver, was on Erbitux.

    He was part of a clinical trial that combined FOLFOX with Erbitux for stage 3 cancer patients. Unfortunately he later was tested and had the KRAS mutation so the Erbitux was discontinued once it made no sense to take it. He had the rash with what looked like acne on his face, some in the scalp and lots on his trunk. He's been off it a little over a year and still breaks out at times on his chest.

    The good news is he tolerated it very well with not a lot of pain. He was given an antibiotic Minocycline to treat the side effects and also used Metrogel religiously. It's a prescription ointment that sure seemed to help. One thing to remember is that the rash doesn't mean it is working or all those KRAS mutation folks would not get the rash. They do!

    My best wishes to you and here's hoping that Erbitus is just the thing! All of you who are going through this nasty cancer have my highest respect. I am in awe of the bravery and support you all have on this board.

    Priscilla

    Good Info
    Thanks Priscilla

    I'll talk to my Onc about some of this. Interesting that the rash does not necessarily mean it is working.

    Be well... Rob; in Vancouver
  • Shayenne
    Shayenne Member Posts: 2,342
    #17
    robinvan said:

    Good Info
    Thanks Priscilla

    I'll talk to my Onc about some of this. Interesting that the rash does not necessarily mean it is working.

    Be well... Rob; in Vancouver

    Yay!!
    What awesome news that you are going to try another option! I am soooo happy for you, I just hope the rash isn't too painful for you, and that your doctors have something for it, to keep it at bay, or ease it up. I haven't been on that drug, but just wanted to give you big hugsssss and know we are all here for you! this is very encouraging!!

    HUGSSSSSSSSSS!
    ~Donna
  • dmdwins
    dmdwins Member Posts: 454 Member
    #18
    Shayenne said:

    Yay!!
    What awesome news that you are going to try another option! I am soooo happy for you, I just hope the rash isn't too painful for you, and that your doctors have something for it, to keep it at bay, or ease it up. I haven't been on that drug, but just wanted to give you big hugsssss and know we are all here for you! this is very encouraging!!

    HUGSSSSSSSSSS!
    ~Donna

    So glad you are WILD
    HA HA. Really truly happy that it opens the door for more option for you. You CAN do this AGAIN. I continue to have you in my thoughts and prayers.

    Smiles,
    Dawn
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #19
    Great
    That is great news for you. You are right, we don't retain what is not relevant to us at the time. You have another option available to you and that is wonderful.

    Kim
  • fedester
    fedester Member Posts: 753 Member
    #20
    rob
    great to here there is a new option available!!

    keep up the positive attitude and be well my friend.

    never,ever give up!!
    bruce
  • maglets
    maglets Member Posts: 2,576 Member
    #21
    fedester said:

    rob
    great to here there is a new option available!!

    keep up the positive attitude and be well my friend.

    never,ever give up!!
    bruce

    you go Rob
    that is great news Rob. what a wonderful new option. sorry can't help at .....no experience with this drug

    Sending all Best Wishes
    and A big Canuckyy hug

    ~mags~

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