KRAS mutation, good or bad?

steven12
steven12 Member Posts: 51
edited March 2014 in Colorectal Cancer #1
I have this and I only know the Erbitux would not work for me. Does anybody know if this is good or bad sign ( or doesn't matter ) for long term prognosis?
Best wishes for every body
Steven

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
    also a "mutant"
    Hi Steven,

    I also have the k-ras genetic mutation- I found out in the middle of taking Erbitux back in Sept '08, which was just when it was really becoming understood & that's why I didn't get tested for my kras before starting Erbitux. I had a horrible acne/rash reaction to the Erbitux, which was essentially for nothing.

    Anyhow, that was almost a year ago and I'm still here and still doing well. Just because I couldn't take Erbitux didn't mean there haven't been other options. After stopping the Erbitux, I stayed on Avastin, Xeloda, and irinotecan. This past April 2nd showed nothing on my PET scan, so I went off of the irinotecan, but stayed on a maintenance dose of the Avastin and Xeloda to prevent anything from regrowing. Not everyone apparently needs to stay on a maintenance dose, however, I did because I had a time period about a year ago when I was off from chemo entirely & things did start growing back again, so I don't want to risk that happening again. Time has marched on and I had another PET scan this morning. I am awaiting my results in the next day or so. I actually was able to view the CD of the PET already (they gave it to me before I left), but I have not been able to see a radiologist's report of it yet. So far, just by looking at the CD myself, I only see a couple of pinpoint spots in my lungs, which were there before, so I'm not too concerned- but nothing anywhere else. I don't know if I'm actually looking at it correctly, so we'll see when I get the report in the next day or two.

    Anyhow, my point here of writing is to let you know of my experience- that even with the kras mutation and the inability to take Erbitux or Vectibux, I still have other options available to me and the k-ras mutation doesn't seem to make me have any problem responding to other kinds of treatments. You still have many treatment options available to you, too!
    I feel good and pretty "normal" most of the time & I definitely know I'm nowhere near to dying!
    I do know the feeling of finding out you have this mutation though- it gives you a sinking feeling like you're a lot worse off than others without the mutation. But, I don't really think that's true...in spite of anything you might read on long term survival statistics of patients with the k-ras mutation (which I'm not really sure what that would say), I believe there are many open doors and many possibilities still available to us & that you will be just fine! The benefit of having the k-ras test done is just so they won't waste time on a particular treatment that will be of no benefit to you- it does not mean that other treatments won't still work for you. Take care-

    Fight on and best wishes to you!

    Lisa
  • dianetavegia
    dianetavegia Member Posts: 1,942 Member
    #3
    lisa42 said:

    also a "mutant"
    Hi Steven,

    I also have the k-ras genetic mutation- I found out in the middle of taking Erbitux back in Sept '08, which was just when it was really becoming understood & that's why I didn't get tested for my kras before starting Erbitux. I had a horrible acne/rash reaction to the Erbitux, which was essentially for nothing.

    Anyhow, that was almost a year ago and I'm still here and still doing well. Just because I couldn't take Erbitux didn't mean there haven't been other options. After stopping the Erbitux, I stayed on Avastin, Xeloda, and irinotecan. This past April 2nd showed nothing on my PET scan, so I went off of the irinotecan, but stayed on a maintenance dose of the Avastin and Xeloda to prevent anything from regrowing. Not everyone apparently needs to stay on a maintenance dose, however, I did because I had a time period about a year ago when I was off from chemo entirely & things did start growing back again, so I don't want to risk that happening again. Time has marched on and I had another PET scan this morning. I am awaiting my results in the next day or so. I actually was able to view the CD of the PET already (they gave it to me before I left), but I have not been able to see a radiologist's report of it yet. So far, just by looking at the CD myself, I only see a couple of pinpoint spots in my lungs, which were there before, so I'm not too concerned- but nothing anywhere else. I don't know if I'm actually looking at it correctly, so we'll see when I get the report in the next day or two.

    Anyhow, my point here of writing is to let you know of my experience- that even with the kras mutation and the inability to take Erbitux or Vectibux, I still have other options available to me and the k-ras mutation doesn't seem to make me have any problem responding to other kinds of treatments. You still have many treatment options available to you, too!
    I feel good and pretty "normal" most of the time & I definitely know I'm nowhere near to dying!
    I do know the feeling of finding out you have this mutation though- it gives you a sinking feeling like you're a lot worse off than others without the mutation. But, I don't really think that's true...in spite of anything you might read on long term survival statistics of patients with the k-ras mutation (which I'm not really sure what that would say), I believe there are many open doors and many possibilities still available to us & that you will be just fine! The benefit of having the k-ras test done is just so they won't waste time on a particular treatment that will be of no benefit to you- it does not mean that other treatments won't still work for you. Take care-

    Fight on and best wishes to you!

    Lisa

    K-ras here too
    I also have the K-Ras mutation. Doctor's don't even test for this unless you are being considered for the Erbitux trial, etc. I wonder how many of the long term folk, Stage I, II, III (like me) and IV have not been tested.

    Agree with Lisa.
  • marc24
    marc24 Member Posts: 92
    #4
    dianetavegia said:

    K-ras here too
    I also have the K-Ras mutation. Doctor's don't even test for this unless you are being considered for the Erbitux trial, etc. I wonder how many of the long term folk, Stage I, II, III (like me) and IV have not been tested.

    Agree with Lisa.

    my mom has K-ras mutation too but also am looking for other drug
    Hello, my mom had this too, our onco mentioned it a couple of weeks ago that the chemo wasnt working on her liver...just want to chime in to see who has any input...hope all will be well for you though
  • dmdwins
    dmdwins Member Posts: 454 Member
    #5
    dianetavegia said:

    K-ras here too
    I also have the K-Ras mutation. Doctor's don't even test for this unless you are being considered for the Erbitux trial, etc. I wonder how many of the long term folk, Stage I, II, III (like me) and IV have not been tested.

    Agree with Lisa.

    Will have to start testing
    The new guidelines for crc now state that ALL patients should have KRAS testing prior to treatment.
    I was fortunate to be tested and know that I was a KRAS mutation. Wish I was the wild type but you deal with what you're dealt. Hopefully more options will become available for us mutants.

    Dawn
  • lesvanb
    lesvanb Member Posts: 905
    #6
    another mutant
    I also have the mutant gene and just finished a year's worth of treatments for stage 4 diagnosis and am still NED. My oncologist just said that Erbitux wouldn't work for me and nothing else that was alarming.

    Leslie
  • ADKer
    ADKer Member Posts: 147
    #7
    lesvanb said:

    another mutant
    I also have the mutant gene and just finished a year's worth of treatments for stage 4 diagnosis and am still NED. My oncologist just said that Erbitux wouldn't work for me and nothing else that was alarming.

    Leslie

    Erbitux
    I believe that there are 6 drugs approved by the FDA to treat CRC: 5FU, oxaliplatin, irinotecan, avastin, erbitux and vectibex. Having the KRAS mutation eliminates 2 of those drugs, although being wild type is no guarantee that they will help. I wish that I was wild type and had the additional drugs available to me, but, as already said above, you work with the hand you are dealt. Having the mutation does not mean the disease is any more aggressive, only that a couple of the available treatments will not be helpful.

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