NSCLC. Biopsy - 1266092

I'm sorry to hear about your recent diagnosis.

There are different ways of ordering the test, but the testing should show the most important EGFR mutations. Whether testing will also potentially show other relevant markers like an ALK or ROS rearrangement depends on where the test was ordered from and what was requested.

It is not typical and generally not recommended to start Tarceva (erlotinib) as first line therapy before learning someone has an EGFR mutation. We know that chemotherapy is a better choice for patients who don't have an EGFR mutation, and we cannot really presume that a never-smoker has an EGFR mutation. Also, Tarceva is standardly started at 150 mg daily.

Having a rash is definitely not required to see a good response to Tarceva, but it isn't possible to know at this point whether 100 mg daily is a good dose or a lower dose than would be ideal for you. It is lower than the standard dose, but many patients require a dose reduction from 150 mg daily and then do very well on 100 mg per day.

Good luck.

-Dr. West

Hi lolo,

Welcome to GRACE. I'm sorry to hear of your diagnosis, but encouraged that you have an activating EGFR mutation and that you are tolerating treatment well.

Interleukin 15 is an example of an immunotherapy, a drug which seeks to harness the power of the body's immune system to fight cancer. There are a number of agents being testing, and you can read about immunotherapy here: http://cancergrace.org/lung/2014/08/25/iaslc_gandhi_promise_immunothera… (At the end of the post, there are also links to other posts on that subject). Immunotherapy is such a hot topic that GRACE is conducting a patient forum on the subject next month in Chicago; information and a registration form can be found here: http://www.jotformpro.com/form/42266827790969

At any given time, there are also many other novel agents being tested in clinical trials. A number of these are designed for patients who have developed acquired resistance to an EGFR TKI such as Tarceva. If you search this site for the term "acquired resistance" you will find plenty of information about such new drugs.

Please let us know if you have any further questions or wish to update us on your status.

JimC
Forum moderator

Hi lolo,

It is not unheard of for patients taking Tarceva to have slightly elevated bilirubin levels, but it can't be presumed to be caused by the Tarceva. In response to a question in which a patient had a level of 1.5 one month and 1.8 the next, Dr. West stated:

"Those numbers are all extremely similar from month to month. The bilirubin is not far off from the upper limit of the normal range, and the rise since last time it was checked is not great. However, we can never say there is no need to worry, even if the numbers were all normal (legally, that would be irresponsible of us). Her oncologist will always be a more definitive source of information about her case." - http://cancergrace.org/topic/bilirubin-18-should-we-worry#post-1261178

And in response to a patient whose bilirubin jumped from 0.8 to 2.8 in two weeks, he said:

"The only number that seems amiss is the most recent bilirubin, which isn't something we see that often with Tarceva. While it could be from that, I think it'll be helpful to see how it changes over time. Unless the timing fit perfectly, I'd be somewhat skeptical that it's very directly related to the Tarceva. But time will tell." - http://cancergrace.org/forums/index.php?topic=10570.msg85016#msg85016

So although you will need to discuss this with your oncologist, it may be something he/she will want to watch over time to see if there is a concerning trend.

JimC
Forum moderator

Hi lolo,

Your doctors know your situation better than anyone here possibly could, so it would be difficult to second-guess their recommendation.

Brief treatment breaks due to side effects are not at all unusual, and a week is a relatively short period. Also, if the bilirubin levels drop, that would be a pretty good indication that Tarceva is the culprit.

JimC
Forum moderator

The point is that a dramatic rise in a short period of time suggests the distinct possibility that things will continue to worsen with more time on treatment. Perhaps not, but it's appropriate to be cautious.

As Jim said, we would never second guess the management decisions of the medical team directly involved, but this is a situation in which I completely understand the concern.

Good luck.

-Dr. West

Hi lolo,

If you are in the U.S., gefitinb (Iressa) is no longer available. Time is the only thing that will tell whether bilirubin levels will stabilize. Since you do have an activating EGFR mutation, it would be a shame to discard it before all dose modifications have been tried, at least until you have had a follow up scan to judge its effectiveness (and in the absence of any cancer-related symptoms). Some especially sensitive patients do well on just 25mg. Standard dosages are based on the maximum well-tolerated amount, not the minimum effective dose.

JimC
Forum moderator

The rise in bilirubin you're describing is pretty minor, and a total bilirubin of 1.4 is not what I would consider to be reason to consider plans of abandoning the current treatment if you're otherwise tolerating it well and not demonstrating clear progression.

As Jim noted, Iressa (gefitinib) isn't really a practical alternative in the US, but Ah I said above I don't see a clear need to seek a change.

Good luck.

-Dr. West

When the oncologist says "not certain clinically significant", that suggests that this isn't necessarily progression. CT scans are the clearly more established way to measure for progression and is not what would be considered invasive in any conventional sense. The fact is that PET scans have been identified as a specifically recommended to not pursue because there is no evidence that they lead to improved outcomes but do cost a great deal more than a CT scan. In this case, the result was ambiguous enough to lead to a suggestion that a CT scan could potentially help clarify what's going on.

Good luck.

-Dr. West

Hi lolo,

I'm glad to hear that you've gotten such good results from Tarceva. In a stage IV setting, local treatment such as surgery is usually reserved for situations in which a tumor is pressing against a vital structure, causing great pain or threatening fracture of a weight-bearing bone. So this plan is definitely out-of-the-box thinking, although not unheard of. One important factor to consider is the anticipated recovery time from the surgery. A person significantly knocked down by surgery may not be able to tolerate further anti-cancer treatment until after a recovery period, which could be critical if the cancer begins to progress.

Dr. West discusses these issues in a GRACE FAQ here.

JimC
Forum moderator

Unfortunately, the results with a positive effusion don't prove to be significantly different from finding other metastases in the chest. I'm sorry to say that I don't believe that aggressive treatment for cure is likely to be a realistic expectation, even if an oncologist suggested it and a surgeon agrees to do it. Too often even medical people are more swayed by delusional optimism than the actual evidence. But that's not absolute -- there are exceptions to every rule. I think you're appropriate to be cautious about surgery, since it could be a lot to go through only to have the cancer progressing in some new place before you recover from it.

Good luck.

-Dr. West

Speaking from a standpoint that this is curative treatment:

The best data driven evidence for adjuvant therapy for nsclc is cisplatin based doublet. Many would argue carboplatin is "probably" as effective but cis has carbo edged out enough to have the "significant" lead. NSCLC specialists usually use cisplatin for curative purposes unless there are health reasons for choosing otherwise or of course the patient feels strongly otherwise.

There are only new studies out on whether or not TKIs have a place in adjuvant therapy and while it seems it would do well for those with an EGFR mutation that information hasn't been proven. Doctors commonly advise caution to those who presume a treatment may or may not work without the data to prove it. All too often the data doesn't prove what we've expected.

There is no information about TP53 positive mutation has any effect on cisplatin used for nsclc.

From the standpoint of treatment without curative intent:

Breaking from treatment until progression is a very appropriate thing to do.

At progression a biopsy then a TKI if appropriate maybe given.

Chemo doublet with carboplatin is usually the first line of treatment for those without a targetable mutation or a newly approved immunotherapy may also be appropriate. There hasn't been enough time or data to say which should come first.

I hope this is helpful. It's very good to know surgery went well and your healing and best of luck moving forward.

Janine

Janine, I thought the EGFR+ T790M confers decreased sensitivity to the TKI'S.
There are several clinical trials regarding the T790M mutation.
Take care, Judy