Roz

Hi Newly Diagnosed,
I wrote a blog called the Roscopal Effect. Take a look at it!
I'm a huge believer in SBRT/SABR!!
 
Best of luck,
Ro

Hi Salem,
I don't like when the medical community says something is not curable. I choose not to believe that and its so much better that way. Who know what treatments will be available with research? I never give up hoping for a treatment.
Hard to answer your questions yet as you don't have results of the biomarker testing. 
So glad you found our Lungevity community.
Best,
Ro

Hi LilyMir,
It's devastating to learn that you have lung cancer no matter what the stage. 
I'm so sorry that your stage is different than you initially thought. 
Once you get the results of your biomarker testing, there may be a targeted therapy.
If not, your team will hopefully have other treatment options for you. I totally understand your feelings of fear and sadness. There are many long term cancer survivors on this forum and as you hear from each of them you will realize that HOPE is alive and well in our community.
We are here for you.
Please ask any questions too!
Best,
Ro
 

Welcome to the Lungevity family.
If you have any questions we are here for you.
Wonderful that the Tagrisso is doing its job!!
 
Best,
Ro

Hi Newly Diagnosed,
I wrote a blog called the Roscopal Effect. Take a look at it!
I'm a huge believer in SBRT/SABR!!
 
Best of luck,
Ro

Hi Salem,
I don't like when the medical community says something is not curable. I choose not to believe that and its so much better that way. Who know what treatments will be available with research? I never give up hoping for a treatment.
Hard to answer your questions yet as you don't have results of the biomarker testing. 
So glad you found our Lungevity community.
Best,
Ro

Greetings!

Has this happened to anyone else ?

I completed radiation for lepidic lung nodule.  In my case, this entailed 5 sessions of stereotactic radiation.

The last day, the treating physician advised that the radiation dented the cancerous cells such that my immune system could now identify them, and my immune system will now be responsible for completing the job.  

If so, I welcome your own story, how you proceeded, results if any, etc.

Thank you.

In health.

Hi LilyMir,
It's devastating to learn that you have lung cancer no matter what the stage. 
I'm so sorry that your stage is different than you initially thought. 
Once you get the results of your biomarker testing, there may be a targeted therapy.
If not, your team will hopefully have other treatment options for you. I totally understand your feelings of fear and sadness. There are many long term cancer survivors on this forum and as you hear from each of them you will realize that HOPE is alive and well in our community.
We are here for you.
Please ask any questions too!
Best,
Ro
 

I also had stereotactic radiation to fry a lung nodule as my 5th line treatment. I remember reading about the Abscopal Effect, but my radiation oncologist did not have data that supported its viability as a systemic cancer treatment.
I know people who've had SBRT (stereotactic body radiation therapy) for one tumor in the lung and have experienced tumors shrinking in other areas. Again, there  are no definitive studies to validate. I endured many recurrences after surgery, chemo-radiation, 18 infusions of taxol and carboplatin. My last treatment was SBRT to stubborn tumor that wouldn't respond to other methods. That was in March 2007 and I've been NED since. So, I'm a believer. I hope you experience similar results.
Stay the course.
Tom

Hi Salem, I was diagnosed at Stage IIIB adenocarcinoma in October 2019 when I was 66. I had a 6 cm tumor in my lower left lung with spread to lymph nodes. I was not a candidate for surgery. I had chemo and chest radiation and then started a targeted therapy for my particular gene mutation in March 2020. I slowly improved over the next year and became NED (No Evidence of Disease) last April. 
The results of your father's biomarker testing will determine his treatment plan. Unfortunately, that testing takes time but is vital. 
Everyone is different, and it's impossible to say how your father may respond to his particular treatment(s), what side effects he might have or how long he can avoid progression. The question of time is one we all have to live with and that many people worry about. I'm NED today but I don't know how long that will last. I also don't know if I'll be hit by a bus tomorrow. I am able to live one day at a time. 
I can say that there are many people with Stage IV lung cancer who are alive and thriving today when just a few years ago, there would have been no hope. We are fortunate to have treatment options that can provide a good quality of life. 

Still waiting on the genes to come back to know more but this is what they confirmed thus far. 
What is the outlook for this type of cancer? They could not find a nodule in the lungs but found adenocarcinoma associated with lc in 2 lymph nodes. I thought this would be associated with a better prognosis but since it’s in the lymph system apparently it doesn’t make a difference.
Was told it’s not curable at stage 3 but am wondering if it is possible to maintain it and for how long is the maximum before I can go to stage 4 or is it guaranteed to get there eventually?
Microscopic Description
Immunohistochemical stains were performed on block A2 with adequate
controls for CK AB1/AE3 ,
CD45.
CD3.
CD20,
CK7, CK20,
TTF-1.
Napsin-A, p40,
S100,
CDX2
GATA3.
PAX&
and
synaptophysin.
The tumor
cells are positive
for
CK AE1/AE3,
CK7, TTF-1,
and Napsin-A.
The tumor cells are negative for
all
other markers
Cytologic evaluation shows large discohesive tumor cells that are positive
for CK AE1 / 3,
CK7,
with variable positivity for TTF-1 and focal positivity
for Napsin-A. The tumor cells are negative for p40 and synaptophysin. All
other markers tested are negative.
These findings favour
diagnosis
of
metastatic non-small
cell adenocarcinoma of lung primary origin. Clinical
and radiographic correlation are recommended.

I am so distraught friends. My surgeon still did not receive the mutation/biomarker results but he called me about the other parts of the final pathology report saying it stages me T3N2. The adenocarcenma that looked under 2.7cm on my contrast CT ended up being 5cm in pathology report. Despite one node on same side (ipsilateral) being positive (8 other node stations were negative), the pathologist set me at N2 since it is a node in the level 5 AP window (aerate pulmonary window 5) which seems controversial (some would stage it T3N1). So here I am anyways finding myself with stage 3B diagnosis despite them thinking it would be stage 1 then 2 originally. I am devastated to say the least. I keep staring at my little boy sobbing wondering if I would be here long for him. I am in a very dark place and need to find my way out friends. Still waiting for biomarker testing results, this is the third week waiting. I am so deeply sad and scared.

Hi everybody!  Would like to say I'm happy to be here, but you know how it is...🤣
 
I was diagnosed back in November of 2019 with stage 4 NSCLC - EGFR exon 19 deletion (gooooo Tagrisso!)
Mets to my brain (it's cool, I don't use it much anyway), leptomeninges, spine and hip (suffice to say, I don't do much dancing anymore)
I'm a 46 year old male.  Never smoker and nobody in my immediate family is/was a smoker (hey, sometimes 💩 happens).
 
Not sure what else to really say at this point.  I think the worst part of my diagnosis was that it may have caused my primary care doctor to quit medicine.  He was a new doctor and the poor guy had to tell me I had cancer when I was just there for a routine check up.  His practice told me he left medicine a couple of months later 😢
 
Anyway, hope you're all doing well!  Keep fighting the good fight and keep ringing those bells! Y'all got this!
 

Steph - 
Your mom has helped so many with her knowledge, wit and empathy for all of us. I am saddened by this latest turn but pray that hospice gives her the relief she desires. I know this is a difficult time for you as well. We'll always be here for you.

Steph,
My heart breaks for what is happening to your Mom.  She has always been a brave and strong woman and she isn't changing in this situation.  All my prayers for her to have peace and comfort and for all of your family to pass through this most difficult time with peace and strength.  A wonderful woman and friend, she was one of the first people to greet me on this forum and I found strength in her attitude and courage.  I will not forget what she did for me and many others here.
Lou

Hi Steph,
I’m very sorry to hear this news.  We know your Mom well here, as a frequent contributor & occasional Zoomer.  There comes a time when hospice becomes the brave choice.  We will pray for your family during this very difficult time.   
Michelle

Dear Steph,
I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
Warmly,
Deb

Dear Steph, 
I'm so very sorry to hear about your mom. She has inspired and helped so many of us on these forums. 
I sincerely hope that she knows how many of us she has touched. I completely understand her decision to transfer to hospice care but know it must be so hard on the family.
I hope she finds peace and comfort.
 
Love, 
Ro
 

Dear Steph, 
I'm so very sorry to hear about your mom. She has inspired and helped so many of us on these forums. 
I sincerely hope that she knows how many of us she has touched. I completely understand her decision to transfer to hospice care but know it must be so hard on the family.
I hope she finds peace and comfort.
 
Love, 
Ro
 

Dear Steph, 
I'm so very sorry to hear about your mom. She has inspired and helped so many of us on these forums. 
I sincerely hope that she knows how many of us she has touched. I completely understand her decision to transfer to hospice care but know it must be so hard on the family.
I hope she finds peace and comfort.
 
Love, 
Ro
 

Dear Steph, 
I'm so very sorry to hear about your mom. She has inspired and helped so many of us on these forums. 
I sincerely hope that she knows how many of us she has touched. I completely understand her decision to transfer to hospice care but know it must be so hard on the family.
I hope she finds peace and comfort.
 
Love, 
Ro
 

Hi everyone,
Sorry I haven't been doing a good job with regular updates here.
Mom discharged home from the SNF and was home for a couple weeks.
She was having a lot of problems with her mobility and standing up and getting around on her own. But we were improvising and finding solutions as we went.
She had 2 more weekly carboplatin infusions but this Friday, 4 days after the 2nd infusion, she went to the bathroom and it was almost entirely blood.
I took her back to the Hospital of the Univeristy of Pennsylvania ED and they admitted her. However, at this time she's declining all diagnostic procedures to identify the source of the bleed and stopping it. She's adamant on transferring to inpatient hospice care and discontinuing all treatment and procedures unrelated to pain management, as is her right.
It's unlikely she will post here again. I know you all understand how difficult of a time this is for her and the rest of our family and that I don't anticipate being very active here at least in the short term.
However, I promise I will update you all if/when anything happens or changes. I know she loved this community dearly and it helped her a lot and she truly enjoyed being able to help others in their journeys as well.
I'll keep you all in my thoughts and I know you'll do the same for her. ❤

Steph,
A number of us were getting very worried.  But we appreciate your updates and hope to continue to hear good things for your Mom.  Thanks so much for the updates and please let her know that she is on all of our minds and we all want a swift recovery for her.
Lou

Hey all,
Mom is making a lot of progress. Things are going slowly but she's making all the right progress she should.
The doctors are hopeful they will be able to discharge her to a rehab/SNF on Friday to start getting some strength back so she can come home and not require 24/7 nursing.

Hey I’m lucky I got through 12 infusions before any bad reactions. 
Just a bunch of pleuritis. No PE or blood clot. Nothing new on the CT. painkillers and anti inflammatory until the onc okays the prednisone tomorrow if she wants to. I told the ER doc it’s usually prednisone for this from the immunotherapy. Said he knows my onc and thinks she may not want me to be on it at this point. Which is fine with me. Not in too much pain. Holding off on the opioids-I’ve had crazy reactions to some and unless my pain is a 20 no way. I have a high pain tolerance and rate this as a 4 on a 1-10 scale. My frame of reference is 32 hours in labor-not even close🥴