next steps - 1255047

sonja417
Posts:2

I've been following this site for quite some time since my mom's diagnosis 2+ years ago and appreciate all the valuable information, this is an amazing site. My mom is doing well clinically so the latest scans were quite a surprise. I believe she is 3rd line - started with carbo/taxol (responded but did not tolerate), non-smoker EGFR + so quickly moved to start tarceva and did well for 1.5 years when she had progression only in liver. She goes to local onc office and went for 2nd opinion with agreement to start Alimta with initial reponse after 3 cycles but now significant progression in liver and lungs. Local onc added carbo to alimta - currently one cycle complete. I think trying Tarceva again may be a good idea but local doc did not agree and I honestly couldn't articulate the potential benefit and maybe I'm wrong. I'm afraid of the carbo bc my mom's QOL was awful with the carbo/taxol in the beginning. She is tolerating ok so far after 1 cycle but still very worried and I'm not sure allimta is worth continuing. I just called a relatively local hospital that has the afatinib compassionate use trial but not sure if it is time for this....they very clearly said last resort. I would love to go to research hosptial (fox chase or Johns hopkins) and my mom wants to fight but she has trouble with travel and not sure she would be up for an intense phase 1/2 trial. I'm the primary caregiver so I want to ensure we continue on the best path. Any thoughts?
best,
S

Forums

JimC
Posts: 2753

Hi sonja,

I'm sorry to hear of your Mom's progression. There is some evidence that returning to Tarceva after a prolonged response the first time may provide a benefit. Here is a previous discussion of a small study in which patients returned to Iressa (a drug very similar to Tarceva) after progression on chemo: http://cancergrace.org/forums/index.php/topic,3666.0.html

The topic was also discussed here: http://cancergrace.org/lung/2011/04/24/interview-with-dr-tony-mok-part-…

The three drugs generally approved for NSCLC treatment after first line are Alimta, Tarceva and Taxotere, so Taxotere would also be an option. Although it is also a taxane like the taxol she had first line, there is also good evidence that Taxotere is different enough that it can provide benefit to patients previously treated with taxol.

The main considerations with regard to whether to choose a trial drug vs. established treatment are (1) whether there are good established alternatives and (2) whether choosing another line of treatment will disqualify the patient from entry into the trial (some trials limit the number of previous lines of treatment).

JimC
Forum moderator

Dr West
Posts: 4735

Thanks for your kind words about GRACE. I'm glad we've provided helpful information. I'm sorry recent changes have left you in need of help now.

There are a few trials here and there for patients with an EGFR mutation and "acquired resistance", and any of these treatments might prove to lead to good and prolonged responses, but none has risen to the top of the list as a definite thing to try. There is no prevailing standard practice except to move on and treat people with acquired resistance and an EGFR mutation with the same options after progression that we'd use for someone who doesn't have an EGFR mutation -- that said, it's certainly reasonable to add chemo to ongoing EGFR inhibitor if the progression is rather minimal, or possibly to return to an EGFR inhibitor later. I would say that the results of restarting a drug like Tarceva (erlotinib), or for switching to afatinib in the compassionate use trial have not been dramatically beneficial. I have the compassionate use trial for afatinib available at my center and can't muster the enthusiasm to recommend it for most of my own patients with acquired resistance to Tarceva. Both the prior data and my experience with it have led me to the conclusion that it's not especially effective.

I wish I could give you a strong recommendation for an alternative, but perhaps removing the conflict of wondering if you're missing something great is somewhat helpful now.

Good luck.

-Dr. West

certain spring
Posts: 762

Good luck to you and your mother. She's lucky to have you looking after her.

laya d.
Posts: 714

Yes. . .best of luck to her. . .And, please keep us posted.

Laya

sonja417
Posts: 2

Certain Spring and Laya: Thanks much for your kind words. Jim and Dr. West: Many thanks for your replies and information. I have been relatively confident on her treatment path thus far and we all were so surprised by her recent progression that I was not prepared. Your message about removing the conflict that I'm not missing something great was helpful for me to hear as I have been struggling with this. I feel better knowing what the potential treatments options are moving forward and we'll take it one day and one cycle at a time.
My mom has been incredibly strong and positive throughout this journey. We had her appt today for chemo (2nd carbo/alimta). Unfortunately her counts were down a bit, but she was able to get the carbo. I would prefer to have her get a scan after 3 cycles but her doctor seems to like to wait for 4 or more if there are no obvious problems. At this point, what is standard for a patient?
Thanks again for all you do!
S

catdander
Posts:

Sonja, It's considered fine to assess with CT anywhere from 6 weeks to 3 months. 3 months is on the long side. However if the cancer seems well controlled or there are few treatment options past what is being given many doctors will wait longer between scans as long as symptoms don't increase.
Janine

JimC
Posts: 2753

Hi Sonja,

Usually when a new treatment is started after progression is noted, it is optimal to have a baseline scan not long before beginning the new regimen, then a follow-up scan after 2-3 cycles in order to judge the effectiveness of that regimen, giving the patient and oncologist the opportunity to change treatments if it's clear that the new regimen is not working. As Dr. West has said "my practice is generally to give an initial two "cycles", typically about 6-8 weeks, and then repeat scans. However, in patients who are rapidly deteriorating, that provides a very strong hint that the treatment isn't working, so I move up scans accordingly, sometimes after just 2-4 weeks on a treatment, so we can cut our losses if it isn't working and consider moving on to the next thing." - http://cancergrace.org/forums/index.php/topic,1275.msg7021.html#msg7021

JimC
Forum moderator

Dr West
Posts: 4735

Thanks to Jim and Janine for together providing pretty much all of the insight we could offer. Jim's provided my personal approach, but I think any interval up to about 3 months is OK...but definitely most oncologists, at least those in North America, do repeat scans after 6-9 weeks in the absence of some intervening new issues.

Also, my general practice if the counts are low is most commonly to postpone chemo for a week, and if counts are better then, to give both agents together.

-Dr. West