kras genetic testing

lisa42
lisa42 Member Posts: 3,625 Member
edited March 2014 in Colorectal Cancer #1
Hi,

How many of you are familiar with getting tested for a kras gene mutation? After emailing my liver surgeon on Friday about another issue on a recent scan and mentioning the chemo my oncologist has me on (Erbitux/Camptosar/Avastin), he asked me, "On a side note, have you been genetically tested to determine if you have a kras gene mutation to determine your responsiveness to Erbitux?" I answered no, and that my oncologist has never mentioned such a thing (my oncologist had also just gone on vacation that same day), I did my own online research on the subject. It sounds as if it's very common and may almost soon be considered standard to test for the kras gene mutation upon diagnosis with colon or rectal cancer (I have rectal w/ mets to liver/lungs). I answered back my liver surgeon that no, my oncologist never even mentioned it. Apparently, he still has tumor tissue samples of mine from my liver resection in May that he can use for doing this test (so maybe he should have been the one to order the testing back then?) Anyhow, up to 40% of patients have this genetic mutation and Erbitux does them no good whatsover. I've been dealing with an awful rash from the Erbitux anyhow, so it would certainly be important to me to know if I have this mutation or not and if I've suffered this rash in vain, if I should be getting something else, or if I should expect a good reaction to the cancer from the Erbitux, etc. Anyone else familiar with kras genetic testing or have had it done?

Lisa

Comments

  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    #2
    Lisa,
    I just went to a

    Lisa,

    I just went to a seminar by Dr Lenz from USC Norris Cancer hospital. He thinks that all metastatic colon cancer patients should be tested at the time of diagnosis. This information does not change later. The tumor and your type of cc has the mutation or it does not have the mutation at the time of diagnosis and it never changes.

    Hope this helps,

    Jennifer
  • jenhopesprays
    jenhopesprays Member Posts: 128 Member
    #3
    Lisa,
    ,
  • changing2
    changing2 Member Posts: 118
    #4
    Did it:
    Hi,
    I did the K-ras test 2 weeks ago and had the mutation:( I'm not suprised though as I've spent most of the last 2 years on some type of treatment.Guess my my type of cc is fairly aggresssive as Chemo usually works for me for about 2- months and then the Cea starts to climb again. I did try Avastin and ended up with blood clots in the lung HOWEVER the clots were only in the right lung! MD wants to try Avastin again after I finish 6 months on coumadin. Avastin was effective for the moth I was on it...but then again...as I said most chemo's help me for a few months.Yet I'm hopeful that Avastin will be the magic bullet:)
    Pray all goes well for you! Let's hope that while I got the negative result...we're due for a better result....and you get the benefit:)
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
    Thanks
    Hi,

    Thanks to both of you for your thoughts & info. I'm dismayed that my oncologist didn't know to do this, which is why I'm now wondering if he's my best choice as an oncologist. He's nice and convenient for when I go to my weekly chemo & I'd really rather not have to go the hour drive to San Diego, but I may end up doing so. I will definitely pursue getting this testing done.
    Thanks again, all

    Lisa
  • KathiM
    KathiM Member Posts: 8,028 Member
    #6
    jenhopesprays said:

    Lisa,
    I just went to a

    Lisa,

    I just went to a seminar by Dr Lenz from USC Norris Cancer hospital. He thinks that all metastatic colon cancer patients should be tested at the time of diagnosis. This information does not change later. The tumor and your type of cc has the mutation or it does not have the mutation at the time of diagnosis and it never changes.

    Hope this helps,

    Jennifer

    Wow! Just heard about this!!!!
    One of my patient partners just had this done. She has a met to the lung. The sample was tested, and it turns out erbitux will work for her...

    She has (guess who) Dr. Lenz from USC as her oncologist...

    Hugs, Kathi
  • fez1
    fez1 Member Posts: 47
    #7
    K-RAS testing
    Lisa- My husband just had the K-RAS testing done and he does not have the mutation. However, note that in his case Erbitux is still only about 15% effective in reducing tumor size.I have read over and over that it's a very good sign to have the nasty rash- that people who react that way have a better chance of tumor reduction. I'm sure that your onc will order the test. It's worth it to know. It takes about 8-10 days to do it.

    Best of Luck,
    Carol
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #8
    Gracias
    Thanks again for comments and info! Much appreciated. I think I've found out more important info from people on this site and one other than I have from my doctor. It's great the people are so helpful!

    Lisa
  • KathiM
    KathiM Member Posts: 8,028 Member
    #9
    I just opened my C3 newsletter....
    ...and there, on the front page, in bold print..."Huge Step Toward 'Personalized' Treatment...KRAS Gene Mutation Clarifies Colorectal Cancer Drug Choice

    WOW!!!!

    "Despite this news, there is a positive side for patients with mutated KRAS, notes Kate Murphy, C3 (Colorectal Cancer Coalition) Director of Research Communication and 25-year colon cancer survivor. "They will be able to avoid side effects and expense of these medicines, and avoid wasting crucial weeks" in ineffective treatment by moving right to other drug treatments"

    In the blink of an eye, things change....

    Hugs, Kathi
  • taraHK
    taraHK Member Posts: 1,952 Member
    #10
    I had this test recently
    Hi Lisa,

    I had this test very recently. (I had the mutation, and therefore had to abandon the plan of having Erbitux). My understanding is that this test is a relatively recent development... Best wishes, Tara
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #11
    Thanks
    Hi,

    Thanks for your reply & info. I will definitely be looking into getting this testing done now. Wish my oncologist had thought of it!
  • KFalvey
    KFalvey Member Posts: 118 Member
    #12
    KRAS testing
    Hi Lisa,

    I had this test done last December and was found to have the mutation, so I wasn't able to take Erbitux. The test cost $4500. and so far hasn't been covered by my insurance. I'm appealing to BCBS but it's so new, it's not an approved test. Good Luck!
    Kandy
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #13
    insurance
    Hi,

    Wow- Where do you live and what is BCBS? Is that your insurance?
    I live in California & I have Aetna HMO. I sure hope mine is covered. I believe I was told they were going to seek insurance authorization first. I'm saving the email I sent to the doctor saying, "I'd like to proceed with the testing, but want to make sure I have insurance coverage for it first".
    Sure hope things go your way with your appeal.
    *Since you can't take the Erbitux, what treatment are you getting (or are able to get?)
    My oncologist had already started me on Erbitux/Camptosar/Avastin without ever testing me. It's my surgeon that prompted the testing. I thought I'd continue on it while I'm waiting, since it's still unknown & I'm also getting the Camptosar and Avastin. I took 5FU, Leucovorin, Oxaliplatin, & Avastin during my first treatment time last fall and winter. I was told I can't have any platinum based treatments anymore (Oxaliplatin, Cisplatin, Carboplatin) because of the neuropathy it caused in my hands and feet. Just curious what others who have the mutation are now taking.

    Take care,
    Lisa
  • doris2657
    doris2657 Member Posts: 38
    #14
    lisa42 said:

    insurance
    Hi,

    Wow- Where do you live and what is BCBS? Is that your insurance?
    I live in California & I have Aetna HMO. I sure hope mine is covered. I believe I was told they were going to seek insurance authorization first. I'm saving the email I sent to the doctor saying, "I'd like to proceed with the testing, but want to make sure I have insurance coverage for it first".
    Sure hope things go your way with your appeal.
    *Since you can't take the Erbitux, what treatment are you getting (or are able to get?)
    My oncologist had already started me on Erbitux/Camptosar/Avastin without ever testing me. It's my surgeon that prompted the testing. I thought I'd continue on it while I'm waiting, since it's still unknown & I'm also getting the Camptosar and Avastin. I took 5FU, Leucovorin, Oxaliplatin, & Avastin during my first treatment time last fall and winter. I was told I can't have any platinum based treatments anymore (Oxaliplatin, Cisplatin, Carboplatin) because of the neuropathy it caused in my hands and feet. Just curious what others who have the mutation are now taking.

    Take care,
    Lisa

    Kras testing
    Hi Lisa

    I just finished my 12 weeks of 5fu,oxiliplatin,avastin,and my onc had me go ahead and do the test,we have not heard back yet,but I also did the test for the Lynch Gene since I wanted to know if I was a carrier for this gene and somehow protect my kids if they knew,well I tested negative for the lynch gene yea.My onc told me my insurance would probably not pay for either test but to my suprise they payed 100% of both,I have Humana.

    God bless you

    Doris
  • KFalvey
    KFalvey Member Posts: 118 Member
    #15
    lisa42 said:

    insurance
    Hi,

    Wow- Where do you live and what is BCBS? Is that your insurance?
    I live in California & I have Aetna HMO. I sure hope mine is covered. I believe I was told they were going to seek insurance authorization first. I'm saving the email I sent to the doctor saying, "I'd like to proceed with the testing, but want to make sure I have insurance coverage for it first".
    Sure hope things go your way with your appeal.
    *Since you can't take the Erbitux, what treatment are you getting (or are able to get?)
    My oncologist had already started me on Erbitux/Camptosar/Avastin without ever testing me. It's my surgeon that prompted the testing. I thought I'd continue on it while I'm waiting, since it's still unknown & I'm also getting the Camptosar and Avastin. I took 5FU, Leucovorin, Oxaliplatin, & Avastin during my first treatment time last fall and winter. I was told I can't have any platinum based treatments anymore (Oxaliplatin, Cisplatin, Carboplatin) because of the neuropathy it caused in my hands and feet. Just curious what others who have the mutation are now taking.

    Take care,
    Lisa

    Kandy's reply
    Hi Lisa,

    I live in St. Petersburg, Florida-had the test done through my Dr. at H.Lee Moffitt Cancer Center in Tampa. My insurance is Blue Cross Blue Shield. I have been in remission since my last surgery in December of last year. I've been able to watch for any recurrance by testing my CEA since it has always been the first indicator of activity for me. It's staying at 1.1 (Thank God!!!) so I haven't even been back to my oncologist since. I get my CEA tested by my primary physician. I was first diagnosed in 2/05, had a resection, did FOLFOX4 for 6 months and had a recurrance in Jan.06. Had more surgery, did FOLFIRI with Avastin for 6 months and 5 months later had another recurrance. This time it was in both lungs and back in the sigmoid area (connected to the outside of the colon). Had surgery on both lungs and recto/sigmoid resection last year. Pathology from the last surgery showed it in 1 lymph node and multiple satellite nodules in the fatty tissue. They suggested more chemo-Erbitux, Camptostar and Avastin if my KRAS test was okay. It wasn't so I decided not to do any more and just watch my CEA once it dropped below normal. I have taken sugar completely out of my diet, started juicing carrots, taking supplements to boost my immune system and eating much healthier. I feel better than I have in years. I'm more hopeful than ever and enjoying every day. If you would of told me I'd be like this a year ago, I wouldn't have believed it.
    Having the mutation means the cancer is a more aggressive one. Keep on fighting it and never give up. God Bless.
    Kandy
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #16
    Thanks Kandy
    Thanks Kandy, for your info. I'm glad to hear you're feeling well. I will definitely never give up either.

    God bless to you too,
    Lisa

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