New Here - Feel out of my league - Any help is appreciated!

[ashnnazila]

Hi, my mom was diagnosed with Stage 4 - NSCLC in January of 2019. Her main tumor was in her left lung and the cancer had spread to her lymph nodes by the time we found out she had cancer. 

Her first line of treatment was tagrisso - which was ultimately working fine until March 2020, the month she turned 50. She did have a couple of side effect issues throughout the year, but now we have gotten news her cancer is now resisting the tagrisso. She received a thracentesis and the results are that she has malignant pleaural effusion. 

The fluid has since come back into her lungs and her oncologist has recommended a Pleurodesis to help stop the fluid from accumulating. 
As for the MPE, there is new cancer on the lining of her left lung and her main tumor has grown. 

Her oncologist would like her to begin a clinical study of a combo of chemotherapy + Immunotherapy.
Durvalumab +  Platinum Doublet Chemotherapy (pemetrexed + carboplatin) 

I want to know what to expect as my mom has never received any type of chemo. treatment. I want and know my mom will live a long and prosperous life, but I want to make sure she is at ease and doesn't worry too much.  Any advice at all is extremely appreciated. 

I read some of your stories and they are so inspiring and are one of the top reasons I keep strong for my mom. She's my best friend and I still have yet to show her the world. 

Thank you in advance! 

[Tom Galli]

Ashnnazila,

I’m very sorry to learn of your mom’s recurrence. Unfortunately, it is a signature trait of all lung cancer and part of what makes our disease so very dangerous and hard to eliminate.

I can’t speak personally to the efficacy of your mom’s clinical study except in the most general terms. Combination chemotherapy with immunotherapy is very promising treatment.

We have perhaps the most extensive Durvalumab discussion resource in the world. Here is the link. Read through this to learn about Durvalumab’s effectiveness and side effects from people who’ve actually had the treatment.  Moreover, I encourage you or your mother to join this discussion forum and tee up your questions to these subject matter expert immunotherapy survivors.

You are most welcome here and this is the place for questions.

Stay the course.

Tom

[catlady91]

Hey there, my mum was diagnosed with stage 3 non-small cell lung cancer in February so I completely understand the anxiety and worry. The good thing is that they are offering your mum more treatment! Did she just have the tagrisso drug without radiotherapy and chemo? I would have thought that they always offer radiotherapy or surgery if possible.

I really hope that the new treatment works! If it doesn't there are so many different options. It seems if one thing doesn't work or stops working, there are plenty other options. Even a few years ago the options were severely limited.

Best wishes to you and your mum. Stay positive! I really hope that the immunotherapy and chemo does the trick this time. Lots of people live with recurrent cancer or manage to beat it. My mum knows a lady who has had stage 4 lung cancer for 8 years and it keeps coming back but each time they keep it under control. Apparently she's doing really well. My mum also met a lady at the hospital who has been living with small cell cancer for years; which is way more aggressive with a far bleaker prognosis than non-small cell. 

Unfortunately chemo doesn't have pleasant side effects, but if there's a chance that the cancer will go away it's what needs to be done. 

 

[LUNGevityKristin]

Did your mom have biomarker testing done?  Did she have a mutation?

[ashnnazila]

@Tom Galli  Thank you so much!! I've seen your comments and posts on so many different forums on this site, and your words to so many others drove me to reach out, so thank you! 

 

@catlady91 I am so sorry to hear about your mom as well. I hope she is in a way better state. Thank you for sharing this information as it really helps me stay positive. My mom didn't do any radiation or chemotherapy, the tagrisso was her first line of treatment. I am very afraid for her but I know she's strong and she can fight it. Best wishes to you and your mom! 

@LUNGevityKristin I don't think so - her MPE was sent to check if she had a MET protein I believe, but the test was negative. We're looking to receive a second opinion.