Wait for genetic analysis results or start chemo? - 1260965

Hi nyc89, I'm very sorry your mother has been dx with nsclc. I know you've got a lot of questions however we can't say what someone should do. #3 on the guidelines explains is best, "Please don’t ask what you “should” do. We can provide general information, and we’re delighted to do it, but we can’t provide medical advice to people who aren’t our patients. We could get into legal trouble, and we don’t want to try to replace the local team that has access to more relevant details, such as scans, labs, and the ability to evaluate a person directly. “Should” is the one word on the forum that is a trigger that we’re crossing a line."

This is the second time I've written this because I accidently trashed the first so if I sound curt it's just how it's coming out because I'm peeved with my chrome browser...
I'm a 4 year member, my husband was dx stage IV in 09 and I've come to learn that most decisions "depend" on some other factors. With that said, first line treatment is a targeted drug if there's a target mutation or systemic chemotherapy.

In the case of lepto, it's unfortunately extremely difficult to treat. Tarceva is promising if there's a mutation, if not would just add harmful side effects.

The following blogs by our faculty doctors should help with a beginning understanding. Note that they have further reading links at the end. Do not hesitate to ask questions and I won't hesitate to forward them to faculty if it's not clearly previously answered.

http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/

http://cancergrace.org/lung/2010/09/18/lung-faq-ive-just-been-diagnosed…

Very best to you and your mother,
Janine

Just because my greatest hope for my husband is to live life with this sentiment I have to add it here.

"Every cancer therapy has two purposes: to improve duration of life, and to improve quality of life. Every other measure of chemotherapy success, such as response rate or progression-free-survival, is a surrogate to these two true goals. I am using the broken record as my pseudo-apology for repeating this mantra repeatedly on GRACE, to my colleagues, and in my mind every time I make a treatment decision." http://cancergrace.org/lung/2010/04/16/introduction-to-first-line-thera…

And on page 8 of this transcript, http://cancergrace.org/lung/files/2010/03/ramalingam-personalized-first… Dr. Ramalingam talks starting chemo 1st if mutation status is unknown.
"So what this all boils down to now is that if a physician is considering giving Tarceva for a patient in
the first line setting, it is imperative that they make sure that the patient’s tumor has EGFR mutation.
If they don’t have the information, it’s better to give chemotherapy. The reason is if you give Tarceva
either in the first or the second line setting, the benefit is still maintained. It’s better to play it safe by
giving the chemotherapy first, and when the tumor progresses, you give Tarceva; thereby the patient
anyway does better and gets the benefit of both of these important groups of drugs."

I don't have a siting to give but doctors have stated many times on Grace that once treatment is started it is best to stick with it until it stops working or causes too harmful side effects. In other words it's not recommended to change treatments just because a mutation is found.

...so should she wait to find out what the mutation status is or go ahead with chemotherapy? It's still the question and depends on how urgent getting started is. That can only be assessed by the team she sees. Such a lot to share without answering...

All best,

In similiar situations for people who are having significant symptoms from lung cancer, it is generally reasonable to proceed with chemotherapy. The mutation test results can be very helpful, but it often takes some time for results to return. It is usually ok to start chemotherapy and then switch to the targeted pill later on. Hope this helps.

Most patients don't experience such a rapid progression that they can't wait a couple of weeks for the molecular testing to identify the best treatment. However, a minority of patients will decline significantly and may not be able to wait 2-3 weeks. As Dr. Creelan noted, the clear standard of care is to NOT presume someone has an EGFR mutation or ALK rearrangement, since there are trials that clearly illustrate that the people who don't have an EGFR mutation (or almost certainly an ALK rearrangement) are likely to be poorly served by starting with a targeted therapy, while starting with chemotherapy is never a bad idea. You can always switch to targeted therapy once you learn that someone has a specific driver mutation, but some people decline too quickly on targeted therapy and never get the opportunity to pursue the chemotherapy that is the optimal first line treatment for the people who don't have a driver mutation like EGFR or ALK.

-Dr. West

Hi nyc89

So sorry to learn your mom was dx with nsclc with likely LMC. If it is confirmed that she indeed has LMC the prognosis is poor no matter what treatments are used so I would urge you to enjoy the time you have with her to the fullest extent as possible. Know that others in the Grace community are here for you and praying for your mother and your family. Wishing you and yours peace, comfort, and joy during the Holiday Season. Bob

The sample from a pleural effusion very often wouldn't generate enough cancer cells to do the molecular testing so testing wouldn't be done. If there's enough for testing the results would be considered correct. It may be worth clarifying with the doctors whether molecular testing was done or just preliminary work that found not enough cells.

It's been so long since I asked that question I can no longer answer your question about stats on those who respond to first line. However it's more likely than not that cancer cells will shrink in number. Unfortunately there's much less hope that chemo will pass the blood brain barrier (bbb). There's a lot written on the subject of bbb on Grace.

Bob's thoughtful words are unfortunately true for his firsthand information comes only a few months since his wife's passing from lepto (LMC). There just doesn't seem to be many options. This is a search result on the subject http://cancergrace.org/search-results?q=leptomeningeal%20carcinomatosis

Here are a couple of blog post on the subject of lung cancer and treatment. http://cancergrace.org/lung/2010/04/05/an-introduction-to-lung-cancer/
http://cancergrace.org/lung/2010/09/18/lung-faq-ive-just-been-diagnosed…

Janine

So to provide a little clarification:

1) It's increasingly common to do molecular testing from the cells in a "cell block", spun down from the fluid collected from outside of a lung. It's felt to be reliable as long as there are enough cells there to do testing. While it's always possible that a negative test (no mutation) is a false negative, it's not likely.

2) Most of the chemo regimens in wide use have a "response rate" of about 25-35%, which is the proportion of patients who have their tumor shrink significantly. That underestimates the proportion who benefit from treatment, which includes many if not most of the people whose cancers show stable disease (no significant shrinkage, or a little but not much shrinkage, but no new lesions or significant growth either). About 40-45% of patients in many trials with the widely used chemo combinations show stable disease, and they probably benefit in terms of living longer by receiving treatment. That leaves about 25-30% of patients whose cancer is quite resistant to treatment or don't tolerate it at all and don't benefit. Some of that minority of patients are likely harmed by combination chemotherapy, but the odds are considerably greater that a more fit patient will benefit rather than be harmed by chemotherapy.

3) I don't know of any evidence that immunotherapies or vaccines are likely to be especially effective for LMC. While possible, I wouldn't presume that less well tested treatments will be more effective than the established treatments; at the same time, the vast majority of clinical trials will exclude patients with a poor performance status or known leptomeningeal carcinomatosis.

Good luck.

-Dr. West