Stage 4 - Adenocarcinoma - Tagrisso stopped working

[ashnnazila]

Hi everyone, 

I just wanted to start by saying you are all so inspiring and just the mere fact of reading your support for one another helps me every single day. 
I apologize in advance for the lengthy message!

I have recently joined this forum - as this is an entire new world for me - I feel out of my league here. 

My mom was diagnosed with Stage 4 Lung cancer in January 2019. Her first line of treatment was Tagrisso - which she was taking with little to no issues for about a year and a half. 

In June of 2020, we found out her cancer was resisting the Tagrisso due to Malignant Pleural Effusion. 

She recieved surgery where her thoracic surgeon used some Talc Powder on the upper lining of her lung, but she does have a PleurX catheter, which is being drained 3 times a week. 

The fluid is between 10-15 CC - so thankfully the surgery has been working. 

We are awaiting to start a clinical trial of a combo of chemo. (carboplatin) and immunotherapy (imfinzi). Pardon my spelling. 

Upon waiting to begin this clinical trial, we have been notified that with an MRI result - they found a 1 cm nodule in the right temporal lobe of her brian. 
Her nurse says this is easily treatable with one round of radiation - as it was caught early. 

I still havent even shared this news with my mom as I know it would devastate and scare the life out of her. 

She has already come so far - any advice on this entire process, chemo / radiation / immunotherapy / and how to tell her the news of this new founding would be greatly appreciated. 

Thank you so much in advance. 

 

[Tom Galli]

ashnnazila,

Welcome here.

The nodule in the right temporal lobe will likely be treated with some form of precision radiation (SBRT, CyberKnife, and etc.) I had precision radiation for a persistent tumor and it worked like a charm.

I would be frank with your mother and let her know about the brain met. I'd also check if it will have any impact on her qualifying for the clinical trial. 

I've not had combination conventional chemo and immunotherapy. But my taxol and carboplatin treatments were not a walk in the park. The immunotherapy drug Durvalumab (Imfinzi) is something we have a lot of information about on the forum.  Read about it here. There is lots of information about the drug and side effects available for your to read into.

Stay the course.

Tom

[BridgetO]

Hi and welcome.

You're not out of your league here!  We're all in the same league and we're here to support each other. I agree with Tom's advise about telling your mother about the met and also the proposed treatment. Let us know what other questions you may have and how we can support you.

Bridget O

[MartinGoh]

Hi ashnnazila,

I understand what you are going through. My late wife was diagnosed with NSCLC with brain mets. 

From our experience, I would encourage you to seriously consider precision radiotherapy (as per Tom's message) if it's just one small tumour. The earlier this is done (i.e. the smaller the tumour), the higher the chances that the radiotherapy will be successful. A smaller tumour might also mean that your mom needs less doses / sessions and might not need to go on steroids (dexamethasone) for too long if at all. 

Hope this helps.

 

 

God bless,
Martin

[Cass]

Hey ash,

I haven't read all the replied yet but I wanted to let you know sometimes even when the tagrisso isn't fully working anymore they can continue it working even slightly. The reason I mention this is because since my mom's been on tagrisso, she also had a small brain met. She got the gammaray knife procedure ( I believe it goes under diff. Names as well ) which is pinpint Radiation. It worked perfectly and over the course of 8 months it disappeared learning only a tiny scar tissue. It also did not have very intense side effects. My mom's hair thinned a bit but that could also be the tagrisso. I'm sorry to hear the tagrisso isn't working as well BUT tagrisso passes the blood brain barrier and possibly could still help with her brain tumor. I know a lot of medications do not pass the blood brain barrier so just a thought maybe something to ask your oncologist about. Please keep us updated. I'm living in a constant vice of anxiety. I'm not sure how people actually do this and handle anything while this is going on. I'm a mess. I guess we just focus on today. Did your mom get her vaccines so she can live outside of quarantine? My mom just started getting them.