Anyone with Squamous Cell and EGFR mutation? - 1252556

cards7up
Posts:635

How often would it be that someone with SCCLC would have an EGFR mutation? If they do, could it be because they have adeno/squamous, but diagnosed only as squamous?
Take care, Judy

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catdander
Posts:

Yes Judy, It's absolutely possible for a squamous only cell lung cancer to have the egfr mutation. certain spring is one such unusual example. Though this is still rather rare it does seem to happen maybe more often than first thought or at least not to be wholely dismissed. For example cs also has a non smoking history which is unusual too though still her cancer was tested more than once for type.
Here is a new video Dr. West put out on the subject. http://cancergrace.org/topic/brief-video-on-my-changing-perspective-on-…

Dr West
Posts: 4735

It's probably in the range of 1-2% of patients with squamous cell NSCLC, so not common, but definitely possible. Many cancers show some heterogeneous characteristics, so it's possible that many cases will have a mix of squamous and adenocarcinoma.

As I mention in the video, we're still limited by only really finding mutations where you look for them, so we can't say that much about mutations in squamous cell NSCLC because we haven't looked exhaustively enough to really know.

-Dr. West

laya d.
Posts: 714

And, I don't know if it's relevant to your question here or not (or even if it's the same thing), but 2 years after my Mom's cancer diagnosis - - and at least at one site (i.e., a new nodule in her left lung that was biopsied) - - her cancer had morphed from adeno to squamous (testing revealed that it still had the EGFR Exon 19 deletion).

Laya

cards7up
Posts: 635

Would you test all squamous cell dx for EGFR mutation? How would someone with squamous know if Tarceva could work for them if it says for non-squamous? Would you as an onc just put someone on Tarceva who has squamous without testing? Thanks all for your replies. I knew someone here had SCC and EGFR+ but couldn't remember who. So sorry CS. Take care, Judy

certain spring
Posts: 762

Just saw Judy's latest post - my impression is that the EGFR trumps the squamous histology, so that Tarceva is likely to work regardless of what type of tumour it is. It would be interesting to hear from others about that. And Dr West seems to have altered his view about testing in his post:
http://cancergrace.org/lung/2012/12/28/molecular-markers-the-more-you-s…
I have the EGFR mutation in NSCLC with a squamous tumour. At least that is what the pathologists saw in the biopsies they took. They found the P63 marker which I gather is a good identifier for squamous.
Several doctors have said "Oh, your tumour must have a mixed histology", and my oncologist had the histology checked at a different lab. However, it still came back as squamous. I suppose it is possible that another, inaccessible part of the tumour is adenocarcinoma.
I have come across others on GRACE in the same situation - between five and ten in the last 18 months, I would say.

cards7up
Posts: 635

I guess my concern is if people have squamous, will an onc test for the EGFR mutation since Tarceva says it's use is for non-squamous? And what about insurance? I know times are a changing and that's good, but would love to see a consensus followed by the onc community. To test or not to test???
Take care, Judy

catdander
Posts:

Oncologists aren't testing for the egfr or alk in people with a squamous nsclc. However they are prescribing tarceva for 2nd and later lines of treatment without any testing because tarceva has been proven to extend life in nsclc whether they have mutation or not.
I should say like the video suggests and the comments after, oncologists are changing their minds about excluding squamous completely. Such as if you are squam but have a never smoking history or some other oddity. There is a lot written on the subject.
I hope this is getting closer to answering your question.

cards7up
Posts: 635

Thank you for clarifying that they're just using Tarceva as second line whether squamous or not. Is this also approved by the insurance companies? I've seen where even those with the mutation have sometimes had a hard time getting Tarceva through their insurance. Stay well! Take care, Judy

catdander
Posts:

Right Judy, It's the way the US insurance is set up. With chemo and radiation the insurance is paid to the cancer center through the medical plan. But with the targeted drugs like tarceva and xalkori they are paid through the prescription part of the insurance. That presents tons of problems because of the wide range of prescription plans. It drove me crazy when D went on tarceva until we got it straightened out but without the help from the drug company we would have been in an impossible situation. It's very unnerving and a problem I'd thought would have been dealt with by now. But it isn't.

Dr West
Posts: 4735

I would clarify that Tarceva (erlotinib) is FDA approved and an appropriate option for people with advanced NSCLC, regardless of tumor "sub-histology", so it's appropriate as second or third line therapy for people with squamous NSCLC. And while I've been impressed by the wider range of patients who have been found to have a driver mutation despite the widely discussed improbabilities, I think it's still helpful to remember that if someone has an EGFR mutation, the evidence shows that they demonstrate the same survival benefit whether they receive an oral EGFR inhibitor as first line or second line or third line treatment. In other words, there isn't necessarily a critical need to test for an EGFR mutation if you're going to give a person the EGFR inhibitor regardless, and the only question is whether you give it as your first treatment or not.

I think we'll be learning more about this, but the most valuable point to me is that a patient can get the opportunity to receive as many potentially helpful treatments as feasible.

-Dr. West

cards7up
Posts: 635

I agree with you Dr. West on your last comment. Would you ever use it stage IIIA with surgical resection?
Since being on this LC journey first with my mother then myself, I've learned much along the way. What I'm seeing now has begun to concern me. Some Onc are throwing protocol out the window and just trying different treatments. I'm glad that LC treatments are changing, but some of these changes seem radical.
Take care, Judy

catdander
Posts:

I believe there are trials happening to see if there is benefit from using tarceva with or instead of chemo. But I don't think it's a standard practice. Of course that doesn't mean that people won't try it off trail.

cards7up
Posts: 635

Janice, since it's only FDA approved for advanced LC, how can they get it for stage IIIA? Can an onc prescribe it? Would love to hear from Dr. West re: my comment above "Some Onc are throwing protocol out the window and just trying different treatments. I’m glad that LC treatments are changing, but some of these changes seem radical."

Take care, Judy

Dr West
Posts: 4735

There is some judgment in the process, and I think that if there is a compelling enough rationale and a well-informed patient, there are some settings in which it's reasonable to deviate from "standard protocol". I think different thoughtful doctors have their own thresholds for what is sensible deviation from limitations imposed by "what the evidence shows" (which is often just not available for patients who don't fit neatly into the somewhat idealized trial populations) vs. what is reckless abandonment of sound principles. I think oncologists are forced almost every day to develop plans for which there isn't much evidence, because patients have inconvenient situations that don't conform to a defined clinical situation, and/or patients aren't interested in limiting themselves to what the evidence suggests. Some docs are guided more by their intuition and/or patient requests more than what the data or even a compelling rationale would dictate; others can be rigid about only doing what the evidence supports and not offering treatments beyond that.

So practicing oncology puts docs on a spectrum of more or less "data-driven", and I don't think falling on either extreme is ideal. One doctor's "art of medicine" may be another doctor's "irresponsible speculation".

I personally am not inclined to give an EGFR tyrosine kinase inhibitor for (possible) stage III NSCLC in general, but I have done it in a few EGFR mutation-positive patients with a good enough discussion of what we do and don't know, and often with some ambiguous findings suggestive of possible advanced disease. I haven't favored long-term use in patients who may be cured, in part because I don't see a clear endpoint, and if people may be cured anyway, I don't think it's great to have them on these agents forever, without knowing if it's helping or just adding side effects.

Coverage from insurers is a growing issue. At $5K/mo, most will cover only "by the book" cases.

-Dr. West

cards7up
Posts: 635

Thank you Dr. West. Just lately I've read so many variations away from standard that it was concerning. No case is typical and I'm glad we do have onc that will work outside the box.
Take care, Judy

chebird
Posts: 104

How is it possible to tell if one is cured or if the Tarceva is keeping the cancer at bay? Do will still just go by the five-year NED standard? I have to agree with Dr. West that a lifetime on this drug when there would be no need would be tedious at best. At he same time, I thank God for it every day.

Holly

Dr West
Posts: 4735

How would we know if someone is cured or the cancer is just kept below the surface by Tarceva? That's easy: we can't know. If given to someone who might already be cured (after surgery for early stage NSCLC, or after chemo and radiation for locally advanced but not metastatic disease), the only way to really test would be to stop the drug after some limited amount of time.

Right now, I don't think we could realistically expect that someone being treated on a targeted therapy for advanced/metastatic disease is going to be cured by it, even if they are experiencing a complete response (no visible disease). In that setting, the cancer typically progresses after it's stopped. But as I describe in my discussion of the cancer's natural history (my most recent post, and more coming), some people may just have an extremely indolent cancer, in which case even if it isn't completely eradicated, the cancer may remain stable not because the treatment is keeping it from progressing rapidly but rather because the cancer was going to progress very slowly no matter what.

So I think the key is to have a good idea of what the cancer would be doing if the treatment weren't being given.

-Dr. West

chebird
Posts: 104

Thanks you, Dr. West. I was pretty sure that would be the answer.

My husband had a locally advanced (quite advanced Pancoast into T1, T2, and ribs) and scans haven't shown progression. Never has any adenopathy been seen. In fact, the rads are now saying all they see is scar tissue. His onc is expecting it to return and wants him to stay on the Tarceva. I'm scared to death to have him stop taking it just to see if he's cured. He has mild side effects: extreme fatigue when he gets home from work, no skin issues. We can live with that.

I'm going to find your recent post right now.

Sorry, my signature disappeared, and I can't see how to get it back.

Blessings to all,

Holly

catdander
Posts:

Hi Holly, It's great to hear your husband's still doing so well. We're both lucky.

If your history is in your bio you can just copy it and paste in the "signature" or unfortunately you may need to rewrite it.

To get there, click on your avatar to the left of any of your posts that takes you to your "forum profile". Click on the "edit signature" and write or paste. Then click submit.

To insure you have it saved copy it to a doc on your computer. Not quite sure about this but any changes you make delete the signature so you want an extra copy just in case.

FYI, The big grey/brown Profile button is Wordpress profile, our parent website. That's different than the forum profile. It that helps.