NSCLC. Biopsy - 1266092

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lolo
NSCLC. Biopsy - 1266092

I was diagnosed with NSCLC on 9/314 after thinking I had pulled muscles while working out. They discovered a pleural effusion and the results were positive. I am a non/never smoker. They did a biopsy. I am waiting for the results. I have been on 100mg Tarceva for 1 week and am not experiencing any rash which is causing concern as we were hoping for EGFR mutation.
Will the biopsy show all mutations? Is each mutation ordered separately?

Dr West
I'm sorry to hear about your

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lolo
Thank you for all you do. I

Thank you for all you do. I couldn't have made it this far without this site.
The biopsy revealed an EGFR positive mutation. The onc upped the Tarceva to 150mg and is hopeful. I am feeling fine.
I saw a trial on interleukin 15. Is there anything else on the horizon?

JimC
Hi lolo,

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_immunotherap... (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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

lolo
Update:

Update:

So I had blood work and everything is fine except my bilirubin went from .5 to 1.9.

Is this cause for concern? Does exercise effect bilirubin? Will it go back down? Reduce dosage or stop completely?

Kind regards...

JimC
Hi lolo,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

lolo
They want me to go off

They want me to go off Tarceva for a week, then retest.
They said the drastic change in numbers causes them to take this route.
This does not make sense to me.
Thoughts?

JimC
Hi lolo,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
The point is that a dramatic

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lolo
Hi again,

Hi again,

Update re: bilirubin

I went off of the Tarceva for 6 days because the bilirubin spiked to 1.9 on 150 mg.. After the break it went down to 1. (just before starting Tarceva it was 5 and 7). They restarted at 100 mg. At first retest it was 1.2. Now retested again at 1.4.

Will it stabilize? Gefitinib uses a different pathway, would that be a better option? Is it even available? A dosage reduction to 75 mg might be better.

I feel great on the Tarceva. No major issues. But I am so concerned this liver issue is going to impact all treatment. I am going to UCLA on Monday to see about a clinical trial.

Plus, I have been doing everything regarding diet to protect the liver. I even stopped my smoothies with mega doses of vitamins I have been having forever.

Kind regards,
L

JimC
Hi lolo,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

Dr West
The rise in bilirubin you're

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lolo
I just went for a PET scan,

I just went for a PET scan, my first one. Priors were CT scans.
Results emailed from my Oncologist:
"Mild uptake noted in the region of the right medial upper lobe modular density/nodule, not certain clinically significant, for recurrent versus low-grade neoplasticism process versus inflammation. If symptomatic and/or clinically indicated, additional follow-up CT exams suggested."
Is this considered progression? Another CT right now would be rather invasive. Feeling fine on 100mg Tarceva but having some unusual sensations which seem to vary day to day.
Also still trying to get into either UCLA or UC Irvine. Looks like insurance will authorize UC Irvine, Dr. Ou.

Dr West
When the oncologist says "not

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lolo
Today I had a consult with a

Today I had a consult with a new oncologist for a second opinion which I thought was for potential clinical trials. His evaluation of my predicament was since the mass has shrunk significantly and appears to have peeled away from the esophagus on the Tarceva and there are no mets anywhere, why not think outside of the box and remove the 1x3 mass surgically and continue Tarceva afterwards. Even though there was a pleural effusion, he feels this would be a reasonable option.
Technically I'm stage 4. Does surgery sound reasonable?

JimC
Hi lolo,

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

<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>

lolo
Thank you once again for your

Thank you once again for your gracious response. I was shocked at the recommendation, and couldn't fabricate meaningful questions. However, the recommendation is compelling. I will be meeting with the surgeon which should give more perspective. Perhaps the surgery will not be as invasive and recovery time minimal. Thanks again.

Dr West
Unfortunately, the results

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

+++++++++++++++++++++++++
Dr. Howard (Jack) West
Associate Clinical Professor
Medical Oncology
City of Hope Cancer Center
Duarte, CA

Founder & President
Global Resource for Advancing
Cancer Education

lolo
Hi again,

Hi again,

I'm at another crossroad and would love some perspective.

I opted for the surgery and had an upper right lobectomy. Surgery was a breeze and I was back on the treadmill 2 weeks later. The original plan was continue Tarceva which I have. However, the biopsy revealed 1 of 4 nodal involvement and Foundation One shows EGFR amplification
E746-A750del, T790M
TP53
JAK3

Now a round of chemo, cisplatin + Alimta is being discussed to clear the nodes and take care of the T790m.

However, I hesitate because TP53 has been shown to lessen the effects of cisplatin. Also, targeted therapies and immuno therapies seem to be more effective for much longer. Chemo seems so random.

Am I looking at things correctly?

Many thanks,
Lollo

catdander
Speaking from a standpoint

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

cards7up
Janine, I thought the EGFR+

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