Progression while on Stimuvax - 1260453

styles
Posts:5

It's been awhile since I posted on this site. I'm a 53 year old female who was diagnosed with Stage 3A poorly differentiated adenocarcinoma in December 2010. Underwent 2 cycles of cisplatin/etoposide with concurrent radiation which ended in March of 2011. After this I entered into the Stimuvax trial. Trial was unblinded in January of this year and I was told I was getting the actual drug. Tumour remained stable until my most recent scan in October. Now it is growing again and my oncologist tells me that they are no longer treating me with curative intent. He tells me that since I am feeling well at the moment that they will wait until symptoms arise before giving me any more chemo and that they will just treat the symptoms. I feel they have given up on me, even though I am willing to fight. My question is: Doesn't it make sense to give me treatment now while I feel strong enough to fight? What is typical protocol for treatment after progression?

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Reply # - November 12, 2013, 06:28 AM

JimC
Posts: 2753

styles,

Without seeing all of your scans and other medical records, and without an opportunity to examine you, no one here would be able to tell you whether you should resume treatment, or whether you could continue to be treated with curative intent. That being said, it is pretty common to re-initiate therapy when evidence of progression is discovered when you are off therapy. The three drugs with the best evidence of benefit as second- or later-line therapy are Pemetrexed (alimta), Taxotere (Docetaxel) and Tarceva (Erlotinib). You can read about second-line therapy in the GRACE FAQ here: http://cancergrace.org/lung/2010/10/04/lung-cancer-faq-2nd-line-nsclc-o…

I think a second opinion, preferably at a cancer center affiliated with a teaching institution, would be a good option for you.

JimC
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Reply # - November 12, 2013, 08:18 PM

Dr West
Posts: 4735

Jim's certainly right that we often start people on treatment as soon as cancer is detected as recurrent, but I would actually say that it's truly quite reasonable to hold off on treatment when a patient is asymptomatic and has indolent disease. First, I think the idea that someone is "no longer being treated with curative intent" is very different from being given up on. You didn't say that you feel dismissed because of that comment, but I fear that this is an easy source of misinformation: a cancer not being curable doesn't mean it's not treatable, but the recommendation against treatment now isn't necessarily because you're not curable.

Instead, I'm going to presume that because it took more than 2.5 years from the end of your last chemo treatment to now, you probably have a slow pattern of disease progression (which is typically the case if it took that long after initial treatment to progress), and I'll presume that if the scans were what indicated progression, you weren't demonstrating new symptoms like pain, profound fatigue, etc.

Our treatment options that have any track record in previously treated patients are limited, so this often means that in patients with slowly progressing cancer, you may run out of options with a meaningful probability of benefit long before patients lose interest in treatment and/or lose performance status needed for more treatment. Therefore, we want to use our treatments judiciously. If someone may go many more months or even potentially a year or more before developing symptoms or "clinically significant progression" (a term I use to distinguish from asymptomatic progression you need to squint to see), there is extremely little risk that you'll miss an opportunity to treat. Instead, delaying treatment may just mean saving effective treatment for the time when it's most likely to do the most good.

Good luck.

-Dr. West

Reply # - November 12, 2013, 09:41 PM

styles
Posts: 5

Thank you Dr. West for your response. What you have said does make a lot of sense and has helped to quell the panic that I have been feeling. I do have another question and that is that I was informed by my oncologist that he has put in the paperwork to obtain approval of Tarceva for me. I was under the impression that Tarceva has not proven very beneficial in patients with a history of smoking. Is this still the consensus?

Reply # - November 13, 2013, 09:32 PM

styles
Posts: 5

Thank you Dr. West. I saw my onc. today and as it turns out I have tested positive for EGFR. They tested a specimen from the biopsy that was done in December of 2010. This was before I had any treatment for lung cancer. The test showed:
EXON MUTATION DETECTION
18 G719X Detects G719S, G719A and G719C
19 Deletions Detects 20 deletions and complex mutations
20 S768I Detects single base change 2303 G>T
T790M Detects single base change 2369 C>T
21 L858R Detects single base change 2573 T>G
L861O Detects single base change 2582 T>A

With these results showing T790M would that mean that I would be resistant to Tarceva?

Reply # - November 14, 2013, 05:33 AM

JimC
Posts: 2753

Hi styles,

Since you have mutations in exons 18, 19 and 21 (including 20 deletions detected in exon 19), each of which would indicate sensitivity to Tarceva, it seem possible that more of your cancer is sensitive than not. In addition, as Dr. West pointed out in his link above, second-line therapy Tarceva has been shown to provide a benefit for EGFR-negative patients, so either way you look at it, it's an appropriate choice.

Dr. Pennell has an excellent discussion of EGFR mutations here: http://cancergrace.org/lung/2009/03/20/np-egfr-muts-demystified/

Good luck with Tarceva. I hope it is effective and that the side effects are mild. If you do have any skin issues, a good place to start would be Dr. Lacouture's presentation: http://cancergrace.org/cancer-treatments/2011/09/08/dr-mario-lacouture-…

JimC
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Reply # - November 14, 2013, 09:02 AM

styles
Posts: 5

Thank you Jim, that is very reassuring. I just wonder if the presence of the T790M is a concern and with that being present does it have an effect on the response to Tarceva?

Reply # - November 14, 2013, 12:20 PM

catdander
Posts:

You're describing a rather rare event in which Dr. Oxnard at Dana Farber is studying. In the following link he asks that those who are found to have the t790m mutation at dx contact him. The contact info is included in the interview link. He doesn't speak to the odds of someone in your situation benefiting from tarceva. The only way to know that for sure is to try it. I'm sure your best info will come from Dr. Oxnard and his team.
http://cancergrace.org/lung/2013/02/22/inherited-t790m-mutation-oxnard/

All the very best and please let us know how things move forward.
Janine

Reply # - November 14, 2013, 08:48 PM

Dr West
Posts: 4735

There is some work that Dr. Greg Riely from Memorial Sloan-Kettering has reported at ASCO 2013, showing that the outcomes in people with a T790M mutation at the time of initial treatment tended to not be particularly favorable with oral EGFR inhibitors. There is still much to learn about this question, but it definitely decreases the probability of a significant favorable response to an oral EGFR inhibitor like Tarceva (erlotinib).

-Dr. West

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