No Maintenance Chemo following 1st line chemo and radiation in Stage IV - 1260142

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Posts:3

Dear Dr. West,
I am in a quandary about what do re a second opinion for my husband. Currently being treated at a research teaching hospital.
He is a 63 yr old, former smoker, otherwise very healthy male, diagnosed with Stage IV NSCLC -10.2cm primary in upper right lung with multiple small brain mets -April 2013
Mutation testing-Foundation one- EFGR-,ALK-
Tx initiated in May- GK- brain mets- so far 2x's with another GK scheduled in November.
Brain mets very tiny 1-2mm and H is and has been totally asymptomatic
WBR-recommended by onc-- however H chooses GK until no longer an option

Tx of primary- concurrent chemo/rad ( Carbo/Taxol)-7wks) , daily radiation( 5days per wk)
Followed up by two full dose Carbo/Taxol infusions 3 wks apart.
Last full dose August 19th
PET - 9/11/13
Results- no further progression and tumor reduction of about 30%(7.2cm)
Tx PLAN-CT scans very two months

Question- Why was there no maintenance chemo ordered?
Is systemic tx of brain mets an option.
Is proton therapy a possibility for main tumor.
Is it feasible to explore surgical removal of remaining tumor?
Was told by GK specialist that studies show maintenance chemo doesn't make much difference....is this a new approach?
Is a second opinion in order?
Many thanks and much appreciation,
Gigi

Forums

catdander
Posts:

Hi Gigi, I'm sorry to know about your husband. Mine is stage IV also as you can read in my signature. As my husband was thought to be stage III at diagnosis he was given concurrent chemo/radiation. It's a really tough treatment to withstand. Along with GK to brain mets I can easily imagine the doctors wanted to give your husband a break. As for maintenance v break most good oncs will also read their patients to get a feel for what the patient is most comfortable with.

Many lung cancer specialists agree that a break with close attention to follow ups every month or 2 can take the place of maintenance in many cases. Especially is they feel comfortable that the person with cancer and any caregiver/wife won't hesitate to call if changes happen. The point is if a person has a chance at getting 2nd line treatment they will do just as well as if they went straight to maintenance. This means too that the onc will consider how comfortable the person is with taking a break. It's a balance. Your 3rd question about "new approach" has some truth. The studies that suggest maintenance is superior to a break till progression have been looked at with more scrutiny and as I suggested earlier many feel that many of the people in the trial who didn't receive maintenance also didn't get 2nd line in time to be effective, skewing the data. So watching closely and moving ahead with 2nd line in a timely manner may be as good a choice. Of course this may not be right for everyone.

This is a good explanation of why systemic therapy is normally better than focal treatment. http://cancergrace.org/cancer-101/2011/01/01/cancer-101-faq-i-have-meta…

There are outliers but no one can know who they are or what that may mean until you've had a chance to watch the cancer. This will help the onc see how it reacts to treatment as well as how it reacts to no treatment.

I hope this is helpful,
Janine

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Posts: 3

Dear Janine,
Thank you for your prompt and extremely informative and thoughtful response to my very first post on this site. I have found Cancergrace very helpful over the past few months as I haved searched often for answers.
My husband and I really appreciate your comments and found them reassuring. The rationale you presented for affording a treatment break makes sense. However, I wonder why there is much support for initiating chemo maintenance among many survivors and oncologists. It seems there is a lot happening in the area of treatment for advanced stage lung cancer and it is hard not to experience a sense of urgency when keeping up with the latest research, articles, trials etc. My husband has tolerated an aggressive chemo/rad regimen rather well and we don't want to lose any gains.
Of course our heartfelt goal is achieving a state of NED for as long as possible. Initially my h was diagnosed as a stage III and we were in the process of scheduling surgery when the routine MRI detected the tiny brain mets which pushed him into stage IV.
It looks like your husband is a warrior who has had success in tolerating various chemo treatments and as a result is in a good place right now. He must have had expert help in navigating all the treatment options and a strong wife.
Thanks again for sharing your knowledge and personal situ.
Gigi

Dr West
Posts: 4735

Gigi,

Janine is quite right that there isn't evidence that maintenance therapy is clearly better than just getting the same therapy later. I'm extremely familiar with the evidence on the subject, and overall it shows that people who experienced stable disease or a response after first line therapy do better if they get more treatment with an active second line agent do better than those who don't get the active treatment after first line. They were designed in a way in which the people who got maintenance therapy all received treatment after first line, but most of the patients on the non-maintenance therapy arm didn't get the opportunity for this therapy at any time. So while they showed a benefit, they don't show that it's critical to get maintenance therapy.

Though maintenance therapy is a way to ensure that patients get subsequent therapy, it is largely driven by marketing efforts as much as actual data. And the lung cancer experts know that the evidence for it is not compelling enough to make it a mandate for our patients. We are often very happy to offer a break for our patients, though we often make recommendations selectively depending on the cancer's features, responsiveness to treatment, tolerability for the patient, and their own preferences.

-Dr. West

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Posts: 3

Dr. West,
Thank you very much for your response and it is much appreciated. However, it seems to me there is no clear cut answer about maintenance chemo following first line treatment. Since, I have been told that a 30% reduction in primary tumor is considered a "partial response".....
would it be detrimental to initiate maintenance chemo and continue to monitor with regular CT scans? Would it possibly have an adverse effect on the effectiveness of a second line if/when needed.
Does it make sense to do maintenance with an agent they may have ability to cross BB barrier since brain mets are involved?

Many thanks...Gigi

Husband-4/13
NSCLC
Stage IV
Adenocarcinoma
Primary tumor- upper right lung
Brain mets

catdander
Posts:

Gigi, there's no chemo that crosses the BBB. Some people have had some efficacy with alimta and brain mets but it's not something oncs would assume to happen.

A watchful treatment break is something to consider even with a partial response. Also there may still be some activity from radiation and if not activity inflammation from radiation may still be making the tumor appear larger than it really is.

Any break in treatment in incurable cancer is done to give the body and mind a break. One analogy many people find helpful is of a marathon compared to a sprint. Like the ability of a marathon runner to run for very long distances she/he must conserve energy is like a person with stage IV cancer who wants to judiciously use treatment in a way that keeps the cancer from being problematic for as long as possible. It's all a balance. Where a sprinter uses all his/her energy from the beginning of a run is like a person with curable cancer using all the treatment necessary even if it makes a person pretty sick it's worth it to kill all the cancer.

I hope that makes some sense.

Dr West
Posts: 4735

I'd modify Judy's comments and say that a partial response is still quite good, and it's very reasonable to pursue maintenance therapy after that. The distinction between maintenance therapy and second line therapy is largely false, since maintenance therapy is really nothing more than initiation of second line treatment before progression is detected. What it does is ensure that everyone who isn't progressing can achieve the benefits of subsequent active therapies, since everyone getting maintenance therapy is assured of getting treatment after first line. In contrast, there is some attrition of people who don't go on maintenance -- perhaps because they develop a sudden rapid decline, go to Hawaii and don't come back, or some other problem. Regardless, to me the most compelling reason to pursue maintenance therapy is that it ensures that everyone gets effective treatment after first line, but the only real distinction between maintenance and second line is the timing. If it's before progression, it's maintenance; if it's after progression, it's second line therapy. The limited evidence available strongly suggests that if everyone ends up getting the treatment, though, the timing doesn't matter, and there isn't a clear mandate to do maintenance if you're confident you can deliver treatment later when it's needed.

As Janine noted, there's no treatment in this setting that is reliably effective in getting across the blood-brain barrier.

Good luck.

-Dr. West

cards7up
Posts: 635

Dr. West, what is it if there's still active cancer? As it seems partial response would mean that there was still active cancer. Would that be on to a second line or considered maintenance? Wasn't maintenance established not that long ago? Take care, Judy

Dr West
Posts: 4735

Maintenance therapy is definitely a relatively new concept, but the idea is that you are "maintaining" whatever response you achieved after first line, even if that is a partial response, very minor response, or stable disease. Complete responses are wonderful but still pretty rare.

-Dr. West