New to forum

[Afearon]

Hi my name is Anna Marie. I am a 56 year old mom, wife and Nana. I was diagnosed with nsclc stage 3A last November.  I had three rounds of chemo then the removal of my right lung upper lobe.  After surgery they found cancer cells in the lining of my lung.  I have a year of immunotherapy imfinzi.  The immunotherapy has been a bit tough, my thyroid is out of wack and I am extremely fatigue. New to this forum and happy I found it. I have had my 3 month CT scan which showed two new spots on my left lung.  They will continue to watch the spots for any growth.  Also my Tumor Marker (CEA) keeps rising which is very scary. The oncologist said there can be many reasons it is on the rise. I am so scared that the cancer is spreading. Any help or advice will be so appreciated.  Thank you, Anna Marie 

[Judy M2]

Anna Marie, welcome to this forum and sorry you are part of the "club".

I was also diagnosed last fall, with Stage IIIB NSCLC (EGFR mutation-Exon 19 deletion). I had 30 radiation sessions, 6 chemo infusions and have been on Tagrisso (targeted therapy) since March with good results. I was not a candidate for surgery.

There are a number of Stage IV survivors on this site. These days our doctors have more options than ever before, so if one treatment isn't effective or causes side effects, there are others than can be used. Having said all that, the fear is real, especially when you're not feeling well.

You may want to visit the Immunotherapy section of this site where you may get some useful information from others who are on Imfinzi. They may have had experiences similar to yours. I hope you find it helpful. 

[Rower Michelle]

Hi Anna Marie,

Welcome to the club no one wants to join.  Judy has pointed you in the right direction what we call “The Durva Club”.  There’s lots of great information posted. 
A word about the CEA markers, they are not very reliable for lung cancer and few oncologists actually track this marker as it’s know to be relatively “noisy” and imprecise as part of a precision treatment plan. 
 

Do you know if you’ve had comprehensive biomarker testing?  There have been a couple of Durva Club members have some spots pop up after completing the 26 infusions and learned there was an EGFR or ALK mutation.   If you haven’t had this done the motto is test don’t guess.  There are so many treatment options available right now.   You might also want to consider a second opinion.  Science is on our side. 
 

Michelle

[Sandy N]

Hello!  I just joined this forum a few minutes ago and wow, to already find people that I can relate to.  My intro has been posted so I won't do a repeat performance here.  In a nutshell, I was diagnosed with 3A in fall of 2019, did the 6 weeks of chemoradiation, was "no evidence of disease" for about 6 months, was started on Durva immediately afterwards, was tolerating it fairly well (a little inflammation), my scan in August showed a small blip on my right adrenal gland but other than that everything else was fine, scan last week showed the blip had grown a little and it's got a couple of relatives that decided to take up residency on my left one, too, and to make it even more special, the lymph node that was originally enlarged for diagnosis one but shrank after treatment was slightly enlarged again.   Sad thing was that I was 3/4 of the way through the Durva treatment...only 6 more to go.  Sadder thing is that Durva didn't seem to help me. 

I think I'm going to be one of the folks that Michelle just mentioned about a group of Durva folks that ended up with spots.  Durva doesn't sound like it's for folks with genetic issues.  So my next step is a biopsy and a blood test.   I'm not giving up because Michelle is right, science is on our side.   

[BridgetO]

Hi Sandy and welcome. It sounds like you haven't had biomarker testing. If you haven't, that's an important next step. Here's a place with info about biomarkers: https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer .

You mentioned "genetic issues", so  I want to be sure you know that there are two kinds of genetic issues. Some people (ncluding me, for a long tme) are unclear about the difference. One kind is called germline or somatic mutations.  These are ones you have inherited and so they will be present in all the cells in your body. Some of these may increase your risk of developing certain cancers. An example is the BRCA mutations that increase risk of breast and some other cancers.  These are detemined by a blood test.  

The other is tumor genetics,which are now usually called "biomarkers" . These mutations are not in your whole body, but only in the cancer. You don't inherit these and you won't pass them on.  They develop when cells start to mutate, often for unknown reasons   These mutations determine whether particular treaments (especially "targeted" therapy) are likely to be effective.  They are diagnosed from testing the tumor tissue, and now, sometimes also by a kind of blood test called a liquid biopsy. Some mutations  you will hear about on these forums are EFGR and ALK.  My tumor had a KRAS mutation, for which there isnt yet a targeted treatment.   

I would guess that most people with lung cancer don't get the testing for somatic mutations. People with advanced lung cancers ususally get biomarker testing and there's a movement to test everybody with lung cancer regardless of stage.

I hope that this info is clarifying and not confusing. Maybe you knwe it already, but as i said,  a lot of people don't.

 I wish you all the best with your future treatment. Keep us posted!

Bridget O