After 4 years 8 months on Tarceva - 1251851

rosetta1213
Posts:2

Hello Grace Community especially to the wonderful Dr. West and colleagues who have given us so much amazing insight and information and guidance and the most trying times.

My mom is a N/S diagnosed with Stage 4 Non Small Cell Adenocarcinoma in April 2008, She did the regular chemo with no success and was then put on Tarceva with amazing success. She had tumor in the upper left lobe and in the rib and concerning for metastasis in the tailbone. Radiation and then TARCEVA brought her to No evidence of disease status.

Now after such a long while we received news that what they tols us were bone islands in the spine back in 2011 have increased by .07 centimeters and the fibrosis in the lung they said she had they now figure is residual tumor and soft tissue has not increased although slightly.

We have heard so many things I am confused about what to do next or what options there are. Since regular chemo carbo/taxol etc failed previously are there any options after tarceva. I have heard that if she gets taken off the Tarceva it will spread like wildfire within weeks. We were told it is like a tea kettle with a lid on itm the Tarceva being the lid keeps the cancer in the kettle, you take the lid off and the steam and whistling comes loud and hard that being the cancer. So, we wonder why since she is progressing so slowly do we have to take her off of it completely. Do you know if keeping her on it has shown to be better then taking someone right off of it?

Also do you know if bone islands can increase and look like cancer?

Have you heard of Lucanix and Aftanib ( I cannot understand the info I have read so far) some say the aftanib is like a super tarceva after the built resisitance to Tarceva.
Neither Lucanix or Aftanib is available in Canada yet but I wonder about asking for special access of it

Any thoughts would be greatly appreciated. The job you are doing here is wonderful!

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Reply # - December 26, 2012, 09:21 PM

Dr West
Posts: 4735

It's great that she has done so well for so long. I think the first question I would ask is why there is any temptation to make any changes if the evidence of progression is as extraordinarily subtle as it seems to be. Did you say that the progression is a hint that some presumed bone islands and perhaps some lung findings appear to have grown by an incredibly tiny amount? If progression is extraordinarily minimal, almost any expert would say that it would be extremely unwise to overreact and make any changes.

I would strongly suggest that you look at the information in the links about acquired resistance to read more about the issues that you've described here. Each of the issues you raise is a big topic, but one that has been covered in posts that are already there for you.

http://cancergrace.org/lung/2012/08/05/acquired-resistance-faq/

By the same token, there's plenty written here about Lucanix and afatinib. The search function at the top of the page can lead you to many of the places in which these topics have been discussed.

Good luck.

-Dr. West

Reply # - December 26, 2012, 09:37 PM

catdander
Posts:

hi rosetta
Im sorry your mom may be coming to the end of such a great treatment stint. There are very promising treatment trials for acquired resistance to tarceva as well as practices by lung cancer specialists that appear to have efficacy. Lucanix however has not been found to be the treatment that many were hoping for and needs to be further studied before it is known who can benefit. Afitanib though, I believe is still showing much promise for acquired resistance.

There is truth that some people progress quite quickly when taken off tarceva after an excellent response followed by slow progression. Unfortunately there's no way of knowing (for now) who this will happen to. Dr. West and others compare the continued use of tarceva following slow progression as bad breaks being better than no breaks.

There is much written about it here on Grace, as you suspect.

This link is to the section of the forum devoted solely to EGFR TKIs. In many of these threads you will find not only excellent discussion but also related links.
http://cancergrace.org/forum/cancer-treatments-symptom-management/egfr-…

This is but one of the links on the topic of acquired resistance.
http://cancergrace.org/lung/2012/08/05/acquired-resistance-faq/

Let us know of follow up questions after you've done more reading or if you have questions about accessing or understanding.

One last thought. It has been noted that those who have done well on tarceva like your mom do well with treatments that follow.

All best,
Janine

Reply # - December 26, 2012, 09:47 PM

catdander
Posts:

Dr. West beat me to the post, of course with better info. Especially the idea that your mom may very well not need to make any changes.

Just one tip for the search function. You may need to log off to access the search results depending on your browser of which I'm not sure of specifics (As a moderator, I added safari browser to my internet exploror not sure which number).

Reply # - December 26, 2012, 10:10 PM

rosetta1213
Posts: 2

You guys are amazing and I apologize for missing the previous posts before asking some of my questions but I was so overwhelmed I did not even think to do that !

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