Questions for Stage IV with KRAS Mutation

peterz54
peterz54 Member Posts: 341
in Colorectal Cancer #1
for those of you who are Stage IV and Kras-mut, how has your Onc delt with not being able to use EGFR inhibitors (eg erbitux)? what is (or was) your treatment plan beyond 1st line therapy?

thanks

peter

Comments

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #2
    initially i was really pissed to be a mutant
    it took about 5 seconds to get over it, a few hours to research the kras gene report that is in another language. i had the report before the onc meeting, its good to have the receptionist on your care team.

    so i thought now lets play the game really hardcore had as i don't have erbitux to fall back on.

    i have a close mate here on erbitux here, its given him a bonus year, his tumour has started growing again recently alas. not sure what his next option will be.

    given the homogenerity of us and our pet tumour cells i thought i might try a few extra things. playing for survival hardcore seems to go with the mutant definition for me.

    we have not discussed treatment plans, prognosis, its premature until the little sucker tumours lands somewhere. if it does its going to get cut out and fried. i will take the little sucker home and microwave it myself.

    that would be perversly satisfying to me. just plain sweet revenge on those troublesome cells, now they may already ll be dead i hope. will find out in 12 hours when i get fridays cea results back.

    after the second consective cea rise from 5.9 to 7.4 we ordered the kras test to be ready for erbitux, but its not an option. obsviously i suspect my first line stage 4 would have had eritux in it, likely due to its anti angiogenic strengths, from memory i think.

    hugs,
    Pete
  • coloCan
    coloCan Member Posts: 1,944 Member
    #3
    pete43lost_at_sea said:

    initially i was really pissed to be a mutant
    it took about 5 seconds to get over it, a few hours to research the kras gene report that is in another language. i had the report before the onc meeting, its good to have the receptionist on your care team.

    so i thought now lets play the game really hardcore had as i don't have erbitux to fall back on.

    i have a close mate here on erbitux here, its given him a bonus year, his tumour has started growing again recently alas. not sure what his next option will be.

    given the homogenerity of us and our pet tumour cells i thought i might try a few extra things. playing for survival hardcore seems to go with the mutant definition for me.

    we have not discussed treatment plans, prognosis, its premature until the little sucker tumours lands somewhere. if it does its going to get cut out and fried. i will take the little sucker home and microwave it myself.

    that would be perversly satisfying to me. just plain sweet revenge on those troublesome cells, now they may already ll be dead i hope. will find out in 12 hours when i get fridays cea results back.

    after the second consective cea rise from 5.9 to 7.4 we ordered the kras test to be ready for erbitux, but its not an option. obsviously i suspect my first line stage 4 would have had eritux in it, likely due to its anti angiogenic strengths, from memory i think.

    hugs,
    Pete

    There is something called "TAS-102" that is in phase II trials
    in Japan that seems to garner positive news thus far for Kras mutation.....
  • peterz54
    peterz54 Member Posts: 341
    #4
    pete43lost_at_sea said:

    initially i was really pissed to be a mutant
    it took about 5 seconds to get over it, a few hours to research the kras gene report that is in another language. i had the report before the onc meeting, its good to have the receptionist on your care team.

    so i thought now lets play the game really hardcore had as i don't have erbitux to fall back on.

    i have a close mate here on erbitux here, its given him a bonus year, his tumour has started growing again recently alas. not sure what his next option will be.

    given the homogenerity of us and our pet tumour cells i thought i might try a few extra things. playing for survival hardcore seems to go with the mutant definition for me.

    we have not discussed treatment plans, prognosis, its premature until the little sucker tumours lands somewhere. if it does its going to get cut out and fried. i will take the little sucker home and microwave it myself.

    that would be perversly satisfying to me. just plain sweet revenge on those troublesome cells, now they may already ll be dead i hope. will find out in 12 hours when i get fridays cea results back.

    after the second consective cea rise from 5.9 to 7.4 we ordered the kras test to be ready for erbitux, but its not an option. obsviously i suspect my first line stage 4 would have had eritux in it, likely due to its anti angiogenic strengths, from memory i think.

    hugs,
    Pete

    downstream of KRAS
    thanks Pete....I am still trying to sort out KRAS enough to understand if anything at all can be done. I will be asking the ONC about it again next week. so far it seems there is a chance of attacking the growth signalng downstream of KRAS at MEK by diet. there is also the mTOR signaling system which can be turned down by diet, aledgedly. In both cases it appears that some polyphenols from normal plant based diets and possibly supplements may help, but this is just speculation on my part. For one, dosage matters, and it is not clear how much of these natural substances would be needed.

    you mentioned "anti-angiogenic strength"....on the chance you haven't visited the Agiogenesis Foundation's web site here is their link. there is info on foods, with research to back it the claims, which can help inhibit angiogeneis.

    Angiogenesis Foundation
  • peterz54
    peterz54 Member Posts: 341
    #5
    coloCan said:

    There is something called "TAS-102" that is in phase II trials
    in Japan that seems to garner positive news thus far for Kras mutation.....

    Thanks for that
    here is one news article from late 2011 about TAS-102

    TAS-102 and Kras-mut article

    here is the google scholar search

    TAS-102 at google
  • coloCan
    coloCan Member Posts: 1,944 Member
    #6
    peterz54 said:

    downstream of KRAS
    thanks Pete....I am still trying to sort out KRAS enough to understand if anything at all can be done. I will be asking the ONC about it again next week. so far it seems there is a chance of attacking the growth signalng downstream of KRAS at MEK by diet. there is also the mTOR signaling system which can be turned down by diet, aledgedly. In both cases it appears that some polyphenols from normal plant based diets and possibly supplements may help, but this is just speculation on my part. For one, dosage matters, and it is not clear how much of these natural substances would be needed.

    you mentioned "anti-angiogenic strength"....on the chance you haven't visited the Agiogenesis Foundation's web site here is their link. there is info on foods, with research to back it the claims, which can help inhibit angiogeneis.

    Angiogenesis Foundation

    A little on using MEK/ERK signaling pathways as of Oct,2011:
    http://medicalxpress.com/print237465652.html

    "Commbination therapies for drug-resistant cancers"

    and "In CRC,all KRAS mutations may not be created equal:A post-EMCC update":

    hemonctoday.com/articlePrint.aspx?type=print&rID=88866

    (A bite to snack on)

    PS: might want to ckeck out BRAF as well......
  • janie1
    janie1 Member Posts: 753 Member
    #7
    coloCan said:

    A little on using MEK/ERK signaling pathways as of Oct,2011:
    http://medicalxpress.com/print237465652.html

    "Commbination therapies for drug-resistant cancers"

    and "In CRC,all KRAS mutations may not be created equal:A post-EMCC update":

    hemonctoday.com/articlePrint.aspx?type=print&rID=88866

    (A bite to snack on)

    PS: might want to ckeck out BRAF as well......

    mutation
    I have the kras mutation. In the beginning i was overwhelmed with information, and it took a few months to sort things out (pretty much on my own). My first onc was of no help. With not being able to use Erbitux, and other factors, I felt I had to do the HAI pump, which was mentioned here recently. I had and still have no idea how effective it will be, but if it buys time, that's what I'm looking for.
    Like already mentioned, I know there are studies being done on kras mutants, so hoping something there will come available.
    Peter, keep us posted on what your onc says this week. Are you at an NCI place?
    ( I was diagnosed one year ago today with stage4. It was at the same time the tsunami hit Japan. I remember thinking the whole world is just going to hell ). But, here we are, all working hard to keep going. It's a beautiful day and I am going out for a long walk with the hubby. In the midst of all this, we have to just enjoy things. Hope everyone was able to do that this weekend.
    Also, thanks for sharing research info, everyone.
  • here4lfe
    here4lfe Member Posts: 306 Member
    #8
    Looking at options now
    My wife goes for a PET and MRI on Thursday. Her CEA doubled after the chemo-embolization, so it didn't work. The onc has told her that there is no more chemo available and he's looking to other alternatives such as SIRT at another hospital.

    Best to you.

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