All Over The Place

Angela,
I personally don't have experience with Afatinib but let's see who does.
Forum Members with Afatinib experience, please share it with Angela.
Stay the course.
Tom

Welcome here.
 
Excepting motherhood, I've been exactly where you are now.  At diagnosis, my surgeon told me I was not a surgical candidate.  But my oncologist figured out a way to shrink the tumor to allow surgery.  I had a years worth of post surgical complications from removing my right lung and during that period, the cancer migrated to my left lung.  I was then right where you are - on the 20% five-year survival curve.  Come February 4th, good Lord willing, I will have survived 12 years from non small cell, squamous cell, lung cancer.
 
It took all kinds of treatment, most of that was unsuccessful.  I had lots of nervous time anticipating and waiting for scans, so much so, I coined a term for the special anxiety we lung cancer patients experience - "Scanziety"!  I was absolutely afraid, then depressed, then afraid and depressed.  But I believed I'd be one of the 20% and if I could live one year, why not five?  When I got to five, why not ten?
 
After you digest this, I've got some information on understanding survival statistics that you may find comforting.  But for right now, I'll keep it simple.  You've got to want to survive to survive.  You've got to believe you will live to live.  I believe attitude is of ultimate importance in arresting your disease.  And, you can influence your attitude about survival, treatment and life.  You are in charge of your feelings and beliefs.  They are about the only thing you can control during lung cancer treatment, so grab the control and believe you are going to make that 20%.  Believe you are going to make the 1% or the 1/2% who go on to have lengthy lives after treatment.
 
Show up to treatment armed with this positive attitude and unshakable belief in life and tell the doctors to "bring it on"!  
 
Stay the course.
 
Tom

Welcome.  I think you may have read my story under the post "10 year survivor".
I am a Stage 3B and am a survivor since December 1997 !
Please keep us posted.
 
Donna G

I agree with Tom.This is something you should talk to your mom's doctors about. To avoid confusion, SABR is also called SBRT. Cyberknife is a specific brand name of SBRT.  Has your mom consulted with a radiation oncologist yet? If not, she might want to ask for a referral. The radiation oncologists might have a different take on this than the medical oncologists or pulmonologists. Hang in there and keep asking questions!
Bridget O.

Angela,
Absolutely it is something you should mention.  In fact, we have a forum member who benefited from new radiation techniques for stage IV disease.  Read her experience here.
Stay the course.
Tom

Thanks Tom!  That makes much more sense to me ❤️️Xx
 
 

Angela,
I was diagnosed in February 2016 during surgery to remove a mass in my left lung.  A previous biopsy didn't indicate cancer so I wasn't expecting that result.  My mass had spread to lymph nodes in my chest. I was stunned, angry, confused, scared - you name it, I was there.  I  followed my surgery with four rounds of chemotherapy.  About two months after I ended chemo, we found cancer in my thyroid (both thyroid and metastatic lung cancer). Again, I panicked, cried, screamed and almost gave up.  But I didn't and I did everything my doctors suggested.  I just finished chemo and radiation for a recurrence in my lymph nodes.  All this to say that yes, I am now calm.  I realize that I can't control what the cancer does or where it goes, but I can control how I react.  
On this site, I have found so much information and so many long term survivors who are absolutely the best at providing hope.  Don't get me wrong - the treatment is not fun.  But at the end of the day, I'm here and making plans to live my life; part of me pretends that lung cancer cloud isn't following me. 

Angela,
Good questions, and, of course, be mindful that I am not a doctor in reviewing my answers.
Advanced stage disease where curative surgery cannot be used is normally treated according to a First Line Standard of Care.  In the US, that would mean combination therapy consisting of radiation and concurrent chemotherapy. Note, I use the word normally because recent treatment methods have, in some instances, replaced the normal First Line Standard of Care (First Line means first treatment experience).
Targeted Therapy is one of the recent innovations. To receive targeted therapy, the tumor biopsy must display certain biomarkers.  A percentage of non small cell adenocarcinoma types are usually the beneficiary of Targeted Therapy.  Immunotherapy is an exciting new form of chemotherapy and I say exciting because it can be used to treat non small cell squamous cell and adenocarcinoma lung cancer.  Before immunotherapy advances, squamous cell had nothing but conventional chemotherapy (i.e. Taxol and Carboplatin or similar) as a treatment vehicle. Again, certain biomarkers must be present in the biopsied tumor to benefit from Immunotherapy.
As to the order of treatment, the order varies depending on the type of lung cancer and the type of Targeted Therapy or Immunotherapy used.  Some Targeted Therapies have been deemed so effective, they have replaced the conventional chemotherapy as First Line Standard of Care.  Targeted Therapies and Immunotherapies are often used as a Second Line Standard of Care treatment. Either way, these innovations are exciting news for the lung cancer community.
The EGFR and ALK markers are indicators for Targeted Therapy while the PD-L and PD-L1 biomarkers are aimed at Immunotherapy. And, remember these new chemotherapy treatments may be paired with radiation therapy. There have also been advances in radiation.  See this link and click on What are the different types of External Beam Radiation Therapies (EBRTs)?
Stay the course.
Tom

Angela, 
Your question: “if cancer in the medistinal nodes, does this mean remission can’t happen.” I answered no meaning remission can happen. We don’t use “remission”; we speak of no evidence of disease or NED. NED can happen if cancer is in medistinal nodes. 
Nodes can be treated with chemo or radiation or specialized radiation. They can also be removed surgically. 
If tumors in lung, spleen and lymph nodes, likely stage 4. Many of us were or are at stage 4. 
What to do?  Love your mother. Be there for her. Learn about the disease. Be her library of knowledge. 
Stay the course. 
Tom. 

Angela,
Quick answers -- on the way to granddaughter's first birthday party....
If in mediastinum nodes, recurrence can't happen?  No.  Location of primary or secondary tumors or nodes has no effect on recurrence I know of.
Can you get rid of cancer in nodes?  Yes, many ways.  Chemo and SBRT, a special form of EBRT.
We all just want cancer gone.
Me calm? Now maybe, while in treatment I was a nightmare.  Bridget is calm. Susan is calm.
Treatments? Pre surgical EBRT and Taxol and Carboplatin to shrink single tumor in right main-stem bronchus.  Right pneumonectomy.  Two more thoracic surgeries to repair pleural-bronchial fistula.  Four tracheal stent insertions.  Twelve more infusions of Taxol and Carboplatin after cancer found in my remaining lung.  CyberKnife (form of SBRT) to zap the one tumor not responding to chemo. Not superhuman, I assure you.  My wife is superhuman.  I was just along for the ride, mainly protesting.
Stay the course.
Tom

I'm here, letting you know that I can relate...feeling alone, can't sleep, feeling the desperate need to learn everything about lung cancer as quickly as possible, and scared to death of the unknown. My mother has adenocarcinoma as well. She was originally diagnosed in 2014. She is now battling a recurrence of lung cancer. Please believe me when I say that it WILL get better. The initial waiting and initial diagnosis seems almost worse than the treatments themselves. Now that you have found us, you are not alone. Everyone who has ever responded to my posts on these forums have helped me feel better with words of encouragement and sharing their personal experience and knowledge. Please reach out to us, we are here for you. I am sorry you and your family are having to deal with all of this. Sending hugs your way.

Hi and welcome!
Your mom's  siituation is not unusual in that earlier stages of lung cancer typically have no symptoms. Mine was diagnosed early because I had CT scans to watch for possible spread of an earlier non-lung cancer. Your anxiey and confusion is normal for anybody who has a family member diagosed with lung cancer. You'r not alone in this. we on this forum understand it.Hang in there and stay with us. You'll find a lot of hope here, as well as information.
Bridget O