New Member

[ropo71]

Hello, all. 

I am Robin Anne I am a newly diagnosed, NSCLC, Adenocarcinoma patient.  They are hesitating to 'tag' Stage IV, however, that's where it's at due to my showing some thankfully 'small' lesions in my brain right now.

My father died in March and last month I began getting horrible, blinding headaches.  He had suffered from cluster headaches so I thought I was under too much stress and was possibly taking after the family genes.....until a couple of weeks ago when I threw up straight bile (i have no gallbladder), and that's when I hit the ER Running and all was discovered.

My father died from lymphoma and had survived both prostate and bladder cancer for 15 years.  They 'say' all of his cancers were environmental but I also have an aunt (his sister) who went through stem cell replacement.  I believe I got some of the family genes.

I did smoke for 20 years and I have been quit now for 12.....and I'm rather upset that I'm the one that winds up with lung cancer when everyone in my family smoked like stacks and I quit!  (sigh)

I'm religious and a bit scared, but quite ready to fight for my life.  My radiation begins tomorrow.  Wish me luck.  I am praying that all in the community are at a place in their lives that makes them happy....and if not, then life is at least hopeful and tolerable u.til the next step.

I do not know a lot about cancer except it is not something anyone ever wants to hear.  

Thank you for everyone's knowledge, help and support as I head out on this journey.

 

[BridgetO]

Hi Robin Anne,

Welcome here. I'm sorry to hear about your diagnosis.  One thing about lung cancer: in order to get it all you need is lungs, doesn't matter whether you're a current, past or never-smoker. Some things like smoking, radon, and environmental exposures can increase risk, but a lot of people have those and neve get it, while many of us non-smokers with radon-tested houses do get it. In any case, we're all in this together. And the inheritance stuff is pretty mysterious, too. My mom had two different primary cancers and I've had 3. Genetic testing shows I have a "variant of unknown significance".  I currently have no evidence of disease (NED).   I do have some long lasting side effects of treatment. They are tolerable and my life is good. 

I wish you all the best on your cancer journey. These forums are a good place to find information and support. Let us know how we can support you.We're here to do that. If you want basic info on lung cancer, Lung Cancer 101 on the main Lungevity website is a good place to start, if you haven't seen it already. Here's the link: https://lungevity.org/for-patients-caregivers/lung-cancer-101. If you have questions, let us know. Among us, we have a lot of experience to share.

Bridget O

[Tom Galli]

Welcome Robin,

So, let's introduce you to lung cancer.  I believe knowledge is power and this allows you to ask "terribly perceptive questions" of your treatment team.  Here is information about Adenocarcinoma. You haven't told us of your biopsy or much about your scheduled treatments.  I'll take a stab and what your treatment might be gleaned from information in you post.

Are you receiving precision radiation for the brain metastasis (we call metastasis "mets")?  Is this the treatment that starts tomorrow?  Precision radiation is a new form of external beam radiation therapy (EBRT).  Here is information about EBRT.  Click on the right arrow before the question: What are the different types of external beam radiation therapy.  The types of precision radiation you may receive are 3D-CRT, IMRT, or IGRT.  But you'll likely receive SBRT and a special fixture will be designed to hold your head in treatment alignment. SBRT is normally used for brain mets and because it is focused, you may only need 3 treatment, each taking about 15 minutes.

Then, you will likely progress to what is called first line (first treatment) standard of care for lung cancer that cannot be addressed by surgery. Here is a short but complete explanation of first line treatment.  A standard of care is established to treat all flavors of lung cancer and is standardized throughout the US.  It generally consists of conventional radiation (30 daily treatment days over the course of six weeks) and once-a-week of chemotherapy.  For Adenocarcinoma, cisplatin or carboplatin are normally combined with pemetrexit or doctataxel.  This combination is called combination therapy.  It is used to attack the cancer cells with two different modes to stop the cells from mutating resistance to the drugs. During first line treatment, the radiation plays the key role and the chemotherapy will be in a supporting or adjuvant role.  Normally, the concentration of chemotherapy will less potent so you should not experience many, if any, side effects.  I didn't have a chemo related side effect during my first line treatment.

My first line radiation was easy the first two weeks.  I didn't feel anything.  By week three, I started to have a sunburn-like pain in the radiation area, and developed a non-productive cough.  My radiation oncologist gave me medication that helped with these side effects.  But in week three, my energy level declined, and the decline got so bad, I had real trouble finding the energy to walk to the clinic from the parking lot every day in week six.  This is normal.  I like to say radiation is the inverse of March; it comes in like a lamb, and leaves like a lion.

But if you have the right biomarkers from your tumor biopsy, you could have Targeted Therapy in place of first line standard of care.  Here is an explanation about Targeted Therapy.  Targeted Therapy gets complicated to explain so I'll wait till you tell us about your biomarkers.

You are far better than I if you are just a bit scared.  I was a "nut case"!  But, when I was diagnosed in 2003, there was no on line support where I could ask questions about treatments and outcomes.  That is what we do.  Here are my tips and tricks for surviving lung cancer.  The disease is survivable.  Don't pay attention to survivor statistics.  Listen to the Dr. Stephen Jay Gould essay here.  I am a man of faith and a deep believer that hope springs eternal.  Here is more of my view on these important topics.  Most importantly, if I can live, so can you.

Questions?  This is a good place for answers.

Stay the course.

Tom

[Donna G]

Welcome Robin,

Is the radiation your getting to your lung or to your brain ?  Glad to hear that you have a positive attitude that really helps.

Keep us posted on how you are doing and feel free to ask questions.

Donna G

[Murphette214]

Good morning Robin Anne! Welcome to the forum. Although I'm sorry you have to be here. Like you, I am newly diagnosed with Stage IV Adenocarcinima. I know almost nothing about cancer and I'm not going to beat myself up over the fact that I smoked. My whole family also smoked and I'm the first one to get lung cancer. I have gained a lot of valuable information from the various posts here, but the first thing I learned is to take it slow and day by day. There's so much we don't know about our disease, and how our specific bodies will react to it and the meds. Everyone's cancer is different even if it is the same basic type. Don't jump to the end game and thoughts of dying right away. Although those WILL come. Focus on you and your treatment. Hugs and prayers!!

Laura - Murphette214

[LaurenH]

Hi, Robin Ann,

Welcome to LCSC. I'm glad to see that you've already connected with some of our members and moderators. As BridgetO mentioned, this site is a great place to find support, information, and hope! I'd be happy to provide you with more information about LUNGevity's support and education resources. In the meantime, please feel free to ask questions and share your experience in the forums. We are here for you!

With gratitude,

Lauren
--
Digital Community Manager
LUNGevity Foundation

[ropo71]

Thank you, Lauren.

I'm so grateful for everyone's assistance and friendliness.  The posts I have received are already so very knowledgeable and provide me with excellent, initial information to read and absorb.

Robin