I have the k-ras mutation & have questions & am upset

lisa42

Hi,
I had posted on another thread asking questions about who had been tested for the k-ras genetic mutation. Well, I've now been tested & just found out today that I do have the mutation, after all. This means that Erbitux won't be an option for me. Unfortunately, I'm finding this out after my oncologist (who never had me tested) has had me on Erbitux (along with Camptosar/ironotecan and Avastin) for seven weeks now. So, dealing with the lousy Erbitux rash (which I have had a horrible case of) has been all for absolutely nothing! I feel angry that my oncologist didn't know enough to test me ahead of time for this. The nurse at my surgeon's office told me this info over the phone today & she said something that I never even had heard of being possible to test for. She said that something in the testing also showed that I'm also resistant to Oxaliplatin. I had oxaliplatin as part of the Folfox treatment before too! Weird and awful to think that it never did me any good (and my current neuropathy in hands and feet from it has also been for nothing). She's faxing the report of all this info to my oncology office where I'll be going tomorrow, so I'll get to read it all for myself then.

I've said on other postings in the past how much I've appreciated my oncologist and the wonderful, positive attitude he's had. That part is still true- he has been very upbeat and positive this whole time with me & that's something I definitely was in need of. BUT, I'm realizing now that his knowledge of what to do for me is somewhat limited. WHY didn't he know to test me for this before???!! He does not specialize in colorectal cancer & I don't know why I didn't see that as a concern before (I guess there's my answer, but I still feel like he should have known this!)

I just found out today that my insurance approved me going to see another oncologist for a second opinion/consultation (which I requested a couple of days ago). This particular oncologist that I'm choosing to go see now is from Moores Cancer Center/UCSD and is in the same center as the two surgeons I've seen in the past. I've been very impressed with the two specialists/surgeons I've seen there in the past. I think it will be much better to have an oncologist who will work together as a team with my surgeons and other specialists. I've also been reading others' postings that their oncologists look scans over themselves along with the radiologists and specialists, instead of just reading the radiologist's report only, as my oncologist has been doing (not looking at the scans himself). This has definitely become a big issue for me because my oncologist has made proclamations to me about things that have disappeared or are no longer visible based solely on the radiologist reports when later radiologists reports contradicted these findings (reported by different radiologists each time- this is also a big issue- I will welcome getting my scans read by top radiologists in their field at UCSD in the future).

Going to a new oncologist will mean me having to drive an hour to get there, vs. staying conveniently local with my other oncologist. As much as that may be a pain, I have finally come to the point where I realize that is definitely going to be better for me.

What have any of you with this mutation been able to take or have had success in taking treatment-wise? I read that Avastin is not negatively affected by this mutation & I've had Avastin in the past & am currently also taking it.
What about adding in 5FU or Xeloda? My current oncologist talked about that, but it hasn't been done as of yet. For my treatment background, I took Folfox plus Avastin 6 months last fall & winter. When I had a recurrence recently, I was put on a combo of Avastin, Erbitux, and Camptosar (also called CPT-11 or ironotecan). I'm told Camptosar is still a good choice for me.
The kicker that I've also read, is that patients with this mutation tend to have a poorer prognosis, overall. Whether this is because there's less treatment options or because it's actually a more aggressive type of cancer, I'm not yet sure.
**Any info on this that any of you may have- good or bad- would be appreciated.

Lisa

KathiM

These tests are new...
KRAS has only been available since late January of this year. The others, if they are the same as my patient partner has had, are even newer.

I agree, our oncologists need to keep up, and not put us through things that won't work, but in this case, well, he was following established protocols.

I know, I know...a bitter pill to swallow. I believe you should get the second opinion, and check a center more geared to research and colorectal cancer (here in So. California, USC medical center is EXCELLENT...Dr. Lens, I believe, or City of Hope). All centers are good at the 'first course', the tried and true that work most of the time. But, as you have learned, this might not be the 'best first course'.

I'm sorry that you were put thru so much already, only to find something else would have been better. But, turn to the future, and look forward. Avastin has only been around for 3 years or so. My diagnosis was almost 4 years ago. There was no treatment standard for mine then, but for many reasons, the treatment worked.

BIG hugs, Kathi

lisa42

Thank you Kathi
Kathi,

I really appreciate your words & they do give me some enlightenment as to why my oncologist may not have been up on things if, indeed, it really is that new. Thanks for the encouragement & I definitely will go forward being as positive as I can be.
Thanks,
Lisa

Moesimo

major cancer center
Please make sure that you get a second opinion at a major cancer center. ask for a doc that specializes in colon cancer. They will have the newest treatments and protocols and they might even have a trial that you can be in.

Good luck

Maureen

taraHK

Hi Lisa,

I am sorry for all you have been through with this...But glad that the insurance company has approved second opinion and I hope all goes well with that visit. Sounds like a great team/center.

You mentioned that the nurse said "something in the testing also showed that I'm also resistant to Oxaliplatin". I wasn't aware that there was any test for this....If you learn anything more about this, and when you have a moment (!), could you share with us? (I tried to do a little web search yesterday but couldn't find anything on this -- other than some preliminary lab-type research).

When I flunked the KRAS test, I was put on oxaliplatin plus Xeloda. I have had FOLFOX before (twice, sigh -- once with Avastin). But I recall you cannot do Oxaliplatin again because of neuropathy. I hope they are able to come up with a Winning Cocktail for you!!

Best wishes,
Tara (hating the oxaliplatin today....)

jenjerandkatesmom

K-RAS, et al
Lisa,
I am so sorry that you had to endure a therapy that wasn't the best choice. Thank God this was discovered before you had gone through any more of it! With this crumby disease, every day counts!
I just saw my oncologist yesterday and he told me that in addition to K-RAS, there are other tests now available for some of the other chemo drugs and more are in the development stage. How great is that?
Others have recommended a second opinion and I certainly agree with that advice. One other thing you could do is pressure your oncologist to provide you with information on ALL genetic testing that is currently available before starting another regimen. I believe we are our own best advocates, but that is their job to stay current on all new weapons that can be used to fight this disease...so hold that doctor accountable! (Sorry if I'm sounding a little feisty about this).
Let us know your progress...I will keep you in my prayers.
-Sharon

lisa42

Sharon,
Your comments are
Sharon,
Your comments are very much appreciated. I will be seeing my oncologist Monday and will definitely talk about these tests. I'm not telling him about the appt. I just made with another oncologist for a second opinion. I want to hear his thoughts and angle now after hearing my test results. Yes, it is great that these tests are now available. I'm sure it will usher in a new era of drugs soon that can be more catered to what will work better for certain patients.
Best wishes to you and all out there-
Thanks,
Lisa

msccolon

jenjerandkatesmom said:

K-RAS, et al
Lisa,
I am so sorry that you had to endure a therapy that wasn't the best choice. Thank God this was discovered before you had gone through any more of it! With this crumby disease, every day counts!
I just saw my oncologist yesterday and he told me that in addition to K-RAS, there are other tests now available for some of the other chemo drugs and more are in the development stage. How great is that?
Others have recommended a second opinion and I certainly agree with that advice. One other thing you could do is pressure your oncologist to provide you with information on ALL genetic testing that is currently available before starting another regimen. I believe we are our own best advocates, but that is their job to stay current on all new weapons that can be used to fight this disease...so hold that doctor accountable! (Sorry if I'm sounding a little feisty about this).
Let us know your progress...I will keep you in my prayers.
-Sharon

chemo sensitivity
When I had my last surgery for recurrent on my ovaries, etc, they did a drug resistance assay for CPT-11, Taxol, Oxaliplatin, Topotecan, Carboplatin, Capecitabine, Etoposide, Doxil, 5FU-Leucovorin and Gemcitabine (keep in mind that before the final pathology came through, they were under the impression this was new primary ovarian and not a recurrence of my adenocarcinoma of the colon). The drugs are listed in the order of low drug resistance, so I have received CPT-11 as my drug of choice. I also tested positive for EGFR in relation to use of Erbitux... does that mean I AM a candidate or am NOT? My HER2 was weakly positive, p53 Gene product was detected, others were no result.

This post encouraged me to locate the paperwork on my surgery to check this out. The tumor on my right ovary was 20x14x11 cm, there was a 9x6.5x3 cm mass on the left ovary, various other implants and 3L of ascites. No wonder I looked 9 months pregnant!
Mary