Advice with brain mets after 10 years Afatinib-Tagrisso

APT_CL
Posts:2
I'm a husband and advocate for my wife, who has been battling stage 4 lung cancer since her diagnosis nearly 10 years ago. We've faced numerous challenges, including multiple brain metastases and various treatments.

Hello everyone,

I'm seeking advice as my wife (51) and I navigate a tough treatment decision in her cancer journey. We are incredibly grateful to be nearing 10 years since her diagnosis of stage 4 NSCLC, which had several brain metastases.

Since her diagnosis, she underwent full brain radiotherapy in 2014 and began treatment with Afatinib (exon 19 mutation), responding well for 2 years before progressing. She then switched to Tagrisso, which has kept her lung disease stable for nearly 8 years, with great quality of life apart from the typical side effects. However, an MRI in early 2023 revealed brain progression, leading to the surgical removal of a 20 mm lesion. Unfortunately, 8 months after the operation, the MRI showed new growth in the same area, so they did targeted radiotherapy, which worked well and “killed” the lesions. However, almost 10 months after the last radiotherapy, the MRI showed further progression, with a new +10 mm lesion that developed rapidly (in less than 3 months).

Doctors have told us this is not a good scenario and have presented two difficult options: 1) further targeted radiotherapy followed by another brain surgery, which may only achieve partial removal of the lesion, or 2) systemic chemotherapy and immunotherapy while continuing Tagrisso, which remains effective in the rest of her body. My wife understandably hesitates about surgery, but we worry that chemotherapy and immunotherapy alone might not be effective, especially since she hasn’t used traditional chemotherapy yet, and we are also concerned about the blood-brain barrier.

She is also afraid of possible sequelae since her first brain surgery 18 months ago provoked her walking instability and hearing loss in one ear. We’re also uncertain if choosing one option could limit our ability to pursue the other later. We know the near future appears unpromising, but we want to keep fighting and are desperate to make the best decision. If anyone has insights, suggestions, or knows of any cutting-edge treatments or alternatives that could help us, we’d be deeply grateful.

APT

APT_CL
Posts: 2
I'm a husband and advocate for my wife, who has been battling stage 4 lung cancer since her diagnosis nearly 10 years ago. We've faced numerous challenges, including multiple brain metastases and various treatments.

Radiation + Brain Operation has just been discarded due to high risk. They will double Tagrisso dosis and then wait to see if it works, then try traditional Chemo. I would still love to hear opinions. Thanks!!!

APT

JanineT GRACE …
Posts: 665
GRACE Community Outreach Team

Hi and welcome to GRACE.  I'm sorry to know you are entering a new stage.  I'm not about to comment just now but wanted to let you know I see your post and will attend to it this evening. 

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.

JanineT GRACE …
Posts: 665
GRACE Community Outreach Team

Edit to say, we can't give advice but we can comment with views and facts.  :)

 

My first thought is to ask if she has been seen at a large research cancer center such as one of NCI cancer centers.  Not that a community cancer center doesn't have skilled knowledgeable oncologist but these centers are dedicated and well regulated centers that have all the nessecary tools to find available options that fit your wife's needs.  The oncologists also do many consults and have ties with others' who will also have input. I say this to most everyone because 2 heads are better than one but your wife may have good options that are only available through a clinical trial.  Often they confirm what the primary oncologist sees which also brings the knowledge you have covered all the bases.  This isn't a popular note however it's important to find the right balance/timing for anti cancer treatment and comfort care.  You may need to start that conversation because docs aren't (yet) being trained on how to do this.  

 

Immunotherapy doesn't show very promising results for those with mutations.  Combining immunotherapy with TKIs can cause dangerous lung inflammation. 
Also the lung inflammation often happens when immunotherapy is followed by a TKI.  Very careful discussion needs to happen before trying that combo if at all. 

 

This is an article on 2nd opinions and this biomarker retesting and resistance, post tagrisso treatment options and more The entire targeted therapies forum is here.  Maybe I should let you go through the 23 targeted therapies forum playlist yourself.    If you are a spanish speaker see this.

 

Keep us posted and I'll keep you and her in my thoughts.

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.