another question about Tagrisso not working and alternatives

BobRyan
Posts:0
I'm here because my SIL has NSCLC and I'm her researcher and supporter.

Hi, this is my first time finding your site. Huge thank you to all who have made such an amazing resource available. In January of last year, my SIL was 63 when she was diagnosed, out of the blue, with stage IV lung cancer--which had spread to both lungs, liver, bones and the fluid (??) around the lungs (Not sure about that). She has EGFR mutation and so started Tagrisso and everything went fabulous. Great PET scan in January, but now, four months later, her CT scan shows very small lung and liver spots that weren't there before. No change in her major large tumor in her lung (that had shrunk considerably), nothing new in her bones. She also has had some minor fluid buildup around her heart but the cardiologist says its fine. After this result, she sees her oncologist on Wed and the nurse already warned her that she will be recommending immunotherapy and chemotherapy. My sister in law is quite fragile and she is very sure that the side effects from chemo would be more than she could bare. Even with tagrisso she has struggled with stomach issues. I am wondering if anyone can give any insight into how likely this new combination will give her some good quality of life going forward or if she will be very sick and feel awful during this treatment. She lives alone, will that be possible? Also wondering if staying on Tagrisso makes any sense. I saw some posts from a few years ago that some are staying on Tagrisso and using radiation for the new mets. Perhaps this is old thinking now?? Any feedback or thoughts would be super appreciated. Thanks in advance.

Bob

JanineT GRACE …
Posts: 657
GRACE Community Outreach Team

Hi Bob, Welcome to Grace.  I'm sorry about your sil.  Unfortunately, cancer becomes resistant to TKIs like tagrisso.  Sometimes all of the cancer becomes resistant at once and sometimes just parts of the cancer become resistant.

 

You want every treatment to last as long as possible before moving on.

When there is some new growth and some stable it may be considered oligoprogression and yes that is still a consideration when treating with tagrisso.  This is a link to our youtube 2022 targeted therapies forum playlist.  The whole 6+ hour forum is 1st in the list.  Here's the agenda that can help navigate the full 6 hours.  The forum has been broken down into topics.  There are several on oligogrogession,

https://www.youtube.com/watch?v=4YgX_NdFZT8&list=PLWsyUmdjLXhHeJbIe-G4T…

https://www.youtube.com/watch?v=hJEj16ecyd4&list=PLWsyUmdjLXhHeJbIe-G4T…

https://www.youtube.com/watch?v=9E8EXdHLXBM&list=PLWsyUmdjLXhHeJbIe-G4T…

https://www.youtube.com/watch?v=jVqRhHXvv1Q&list=PLWsyUmdjLXhHeJbIe-G4T…

 

When cancer with EGFR mutations becomes resistant to tagrisso it's often because it creates another mutation. Sometimes these new mutations also have a targeted therapy or other feature that would speak to the best treatment.  Genetic testing is done at this stage to determine what treatment is best. 

 

It's important to know that immunotherapies aren't usually used until all TKIs are used up because moving from immunotherapy to TKI can cause dangerous side effects.

 

This should give your sil or care partner info to start the conversation with her onc.  As for the stomach issues, they are very common and shouldn't be easily excused as not that bad just because it's not chemo.  Chemo may not be as bad as expected and you can always stop, side effects usually resolve quickly after stopping treatment.

Keep us posted please and take care,

Janine

I joined GRACE as a caregiver for my husband who had a Pancoast tumor, NSCLC stage III in 2009. He had curative chemo/rads then it was believed he had a recurrence in the spine/oligometastasis that was radiated. He's 10 years out from treatment.