Eagle13

Originally I was told needle biopsy was the only option.  Except for me, the nodule was too close to my heart so serious surgery was needed.  I declined.  After monitoring for almost a year, I was told there was a procedure called a navigational bronchoscopy. I opted for that since it was minimally invasive.  I am now almost 1 year to the day a cancer patient/survivor stage 4 metastatic adenocarcinoma lung primary from my biopsy via the navigational bronchoscopy in 2017.
My CT this week showed results that the targeted therapy is working for me and has shut down the cancer compared to my last CT in October.  I am convinced the genetic testing is the right approach, at least for me.  Stay positive and never underestimate the power of prayer.
🦅

Originally I was told needle biopsy was the only option.  Except for me, the nodule was too close to my heart so serious surgery was needed.  I declined.  After monitoring for almost a year, I was told there was a procedure called a navigational bronchoscopy. I opted for that since it was minimally invasive.  I am now almost 1 year to the day a cancer patient/survivor stage 4 metastatic adenocarcinoma lung primary from my biopsy via the navigational bronchoscopy in 2017.
My CT this week showed results that the targeted therapy is working for me and has shut down the cancer compared to my last CT in October.  I am convinced the genetic testing is the right approach, at least for me.  Stay positive and never underestimate the power of prayer.
🦅

Kleo-
I too wish they had done the biomarker testing on my biopsy.  My biomarker testing was done on the fluid pulled from the thoracintesis.   I also had blood pulled that confirmed the finding from the biomarker testing.  In my opinion it can be done from bloodwork.
🦅

I was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion.  I am now Stage 4.  Biomarker testing was done on the fluid that was pulled.
I sought a second opinion with the agreement of my Onc.  My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid.  Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy.  The targeted therapy is 1 pill I take once a day, every day at the same time.  The drug for my mutation, EGFR - (Epidermal Growth Factor Receptor) they chose was Tagrisso.   I am a non-smoker.  EGFR is typical for non-smokers who get  non small cell lung cancer.
🦅
 

Here is a good link that describes the PET and the differences from a CT.
https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan
My personal experience has been insurance wont approve the more expensive PET unless the Dr has a pre-scan approval discussion with the ins company Dr.  The PET is newer more advanced technolgy where the CT is the main stay.
You should ask for a copy of each scan from each provider along with the radiologist report.  Its your medical record.  I have personally taken my scan results to get second and 3rd opinions from no kidding top notch experts.  
Don’t be afraid to demand the genetic biomarker testing.  This is what changed direction for me after the Durva was not working.
 
🦅

Here is a good link that describes the PET and the differences from a CT.
https://my.clevelandclinic.org/health/diagnostics/10123-pet-scan
My personal experience has been insurance wont approve the more expensive PET unless the Dr has a pre-scan approval discussion with the ins company Dr.  The PET is newer more advanced technolgy where the CT is the main stay.
You should ask for a copy of each scan from each provider along with the radiologist report.  Its your medical record.  I have personally taken my scan results to get second and 3rd opinions from no kidding top notch experts.  
Don’t be afraid to demand the genetic biomarker testing.  This is what changed direction for me after the Durva was not working.
 
🦅

Stay positive!  Ask for a copy of the scan on a CD.  There are youtube’s on how to look at the scan yourself.  The PET should light up any cancer that is active.  I pray that your scan is clear.
🦅

Watch the weight gain.  It was fluid build up for me, Pleural Efusion.  Mine was more rapid then a pound every two weeks though.

Opal-
Scans are your friend.  That is the only way to see how things are going.   I have had many scans PETs and CTs.  Also MRI. Sometimes there are discoveries and you make adjustments.  Think positive!

Robert-  
My original diagnosis was Metastatic Adenocarcinoma lung primary and I was Stage 3b at the time.   I was told that the staging is based on where all the cancer is found.  I had a spot on my lung detected from a CT at a physical.  When a biopsy was scheduled via navigational bronchoscopy one of my lymph nodes on the opposite side was found to have issues and was biopsied.  Tumor is stage 1, stage 2 is detection nearby but still contained on the same side in the same organ.  Stage 3 was outside that organ but within close proximity like a lymph node.  3b since the lymph node was on the opposite side.   I became stage 4 when the cancer had spread to the fluid in the pleural effusion.  At least that is how I remember the staging being explained to me.   I was also told that staging is the way the physician determines the approach for treatment.  From what I have read my initial treatment was textbook for my diagnosis.  Chemo and radiation.  Once complete it was typical to go to immunoyherapy for “maintenance” or prevention treatment.  Unforunately, the immunotherapy did not work as expected for me.  You are correct,  not every drug works for every individual.  That is why it is critical to seek as much expert advise as you can get.
Looking back,  knowing what I know now, I would demand biomarker testing before any initial treatment.  Of course hind sight is always 20/20.   Who knows what would have happened since Tagrisso wasn’t approved by the FDA until I had already had a couple of months of treatment.

....itspread to my lymphnode so isn't that still metatastic?
I am not a physician.  The definition of metastatic is when the cancer moves from the oringinal location to any other location in the body.   Don’t be afraid to get a second opinion from a specialist in lung cancer.   The treatment is was given was not working for me.  I asked my onc for a referral to a specialist.  That is when my onc ordered the biomarker testing on my drained fluid.  The test results and consultation with another totally separate cancer treatment facility is how my treatment changed.  I also had a totally separate 3rd consultation with a no kidding Lung Cancer Specialist at another cancer treatment facility to confirm that the Tagrisso was the right choice for my situation.  I was fortunate enough to find what appears to be the right treatment for me.  At least so far.  I am hopeful that it will be a long time before the Tagrisso stops working.  I am told that at some point the cancer will prevail and I will have to switch treatment.  The 3rd opinion specialist said he was hopefully it would be a few years or more.   That was very encouraging.

I was on Durvalumab for 2 months.  It did not work for me.  I developed a plural efusion and had to have 4 Thoracentisis procedures to remove the fluid. The fluid was tested for cancer and came back positive.  That moved me to stage 4.  Luckily they did biomarker testing on the fluid and I came back as EGFR.  Then I was switched to Tagrisso.  The Tagrisso has shut down the plueral effusion.  I have not had to have any fluid removed since starting Tagrisso a couple of months ago.
I was told by the pharmacist that pleural effusion was a possible side effect of the Durvalumab.   If you start experiencing severe shortness of breath you should go see your pulmanologist and have them check for fluid build up around your lung(s).
If you have not had biomarker testing done I would ask for it.  In my opinion the targeted therapy determined from the biomarker testing is the right approach.  By design it goes after the genetic code that is the engine for the cancer you have.  
BTW-  the Thoracentisis procedure is not a big deal.  Seems a little scarry when you hear about it.  If you have fluid build up, you will notice a major improvement in breathing once its removed.  Check Youtube for a video of the Thoracentisis procedure.
Don’t underestimate the power of prayer.
 

Opal-
Scans are your friend.  That is the only way to see how things are going.   I have had many scans PETs and CTs.  Also MRI. Sometimes there are discoveries and you make adjustments.  Think positive!

Robert- 
I pray that you get good results from your CT.  I wanted the Durvalumab to work for me.   Based on the technical data it works well for a lot of people. 

I found that coffee was a problem for me until I started the Tagrisso.  It gave me dry mouth and irritated my throat.  I believe my issue was the radiation treatement that focused on my lymph nodes next to my trachea.  I was a major robust coffee drinker before the chemo and radiation.   It seems like I am finally healing from the radiation and can drink my favorite coffees again.
I had 7 treatments of Durvalumab(Imfinzy) before I had to stop.  It is no fun to have to do the infusion every two weeks and the blood work that goes with it.  For me, I noticed shortness of breath getting worse as the treatment progressed.  Stairs were particularly a problem.  It got so bad I had to start using the elevator to go up 1 floor.  Finally during my 7th treatment visit I asked what I could do for relief. Inhaler, oxygen concentrator etc....   that is when I was told the onc would have to defer to the pulmonologists if I wanted those things.  I went to the pulmonologist, he told me I had ~gallon of fluid and sent me to the ER for a Thoracentisis.  That started to road to Tagrisso.

Yes, every treatment I saw the PA or the oncologist.  I told them both about the continued issue with shortness of breath at each meeting.   They wanted to give the treatment time to work and were waiting for the time when the next CT was allowed by insurance.  The CT is what they go by to see how things are working or not.   A chest xray will show the Pleural effusion.   I got a CT after the chest xray in the ER.

I found that coffee was a problem for me until I started the Tagrisso.  It gave me dry mouth and irritated my throat.  I believe my issue was the radiation treatement that focused on my lymph nodes next to my trachea.  I was a major robust coffee drinker before the chemo and radiation.   It seems like I am finally healing from the radiation and can drink my favorite coffees again.
I had 7 treatments of Durvalumab(Imfinzy) before I had to stop.  It is no fun to have to do the infusion every two weeks and the blood work that goes with it.  For me, I noticed shortness of breath getting worse as the treatment progressed.  Stairs were particularly a problem.  It got so bad I had to start using the elevator to go up 1 floor.  Finally during my 7th treatment visit I asked what I could do for relief. Inhaler, oxygen concentrator etc....   that is when I was told the onc would have to defer to the pulmonologists if I wanted those things.  I went to the pulmonologist, he told me I had ~gallon of fluid and sent me to the ER for a Thoracentisis.  That started to road to Tagrisso.

Kleo-
drink a lot of water to counter the side effects.  I found that drinking plenty of water every day made a big difference in side effects.  It worked for the Platinum based chemo and the Durvalumab.  In my cased the side effects of the Durvalumab were a cough, fatigue and the unfortunate build up of fluid. (Pleural effusion). Hopefully, you won’t experience the Pleural Effusion.

Robert-  
My original diagnosis was Metastatic Adenocarcinoma lung primary and I was Stage 3b at the time.   I was told that the staging is based on where all the cancer is found.  I had a spot on my lung detected from a CT at a physical.  When a biopsy was scheduled via navigational bronchoscopy one of my lymph nodes on the opposite side was found to have issues and was biopsied.  Tumor is stage 1, stage 2 is detection nearby but still contained on the same side in the same organ.  Stage 3 was outside that organ but within close proximity like a lymph node.  3b since the lymph node was on the opposite side.   I became stage 4 when the cancer had spread to the fluid in the pleural effusion.  At least that is how I remember the staging being explained to me.   I was also told that staging is the way the physician determines the approach for treatment.  From what I have read my initial treatment was textbook for my diagnosis.  Chemo and radiation.  Once complete it was typical to go to immunoyherapy for “maintenance” or prevention treatment.  Unforunately, the immunotherapy did not work as expected for me.  You are correct,  not every drug works for every individual.  That is why it is critical to seek as much expert advise as you can get.
Looking back,  knowing what I know now, I would demand biomarker testing before any initial treatment.  Of course hind sight is always 20/20.   Who knows what would have happened since Tagrisso wasn’t approved by the FDA until I had already had a couple of months of treatment.

....itspread to my lymphnode so isn't that still metatastic?
I am not a physician.  The definition of metastatic is when the cancer moves from the oringinal location to any other location in the body.   Don’t be afraid to get a second opinion from a specialist in lung cancer.   The treatment is was given was not working for me.  I asked my onc for a referral to a specialist.  That is when my onc ordered the biomarker testing on my drained fluid.  The test results and consultation with another totally separate cancer treatment facility is how my treatment changed.  I also had a totally separate 3rd consultation with a no kidding Lung Cancer Specialist at another cancer treatment facility to confirm that the Tagrisso was the right choice for my situation.  I was fortunate enough to find what appears to be the right treatment for me.  At least so far.  I am hopeful that it will be a long time before the Tagrisso stops working.  I am told that at some point the cancer will prevail and I will have to switch treatment.  The 3rd opinion specialist said he was hopefully it would be a few years or more.   That was very encouraging.

I was on Durvalumab for 2 months.  It did not work for me.  I developed a plural efusion and had to have 4 Thoracentisis procedures to remove the fluid. The fluid was tested for cancer and came back positive.  That moved me to stage 4.  Luckily they did biomarker testing on the fluid and I came back as EGFR.  Then I was switched to Tagrisso.  The Tagrisso has shut down the plueral effusion.  I have not had to have any fluid removed since starting Tagrisso a couple of months ago.
I was told by the pharmacist that pleural effusion was a possible side effect of the Durvalumab.   If you start experiencing severe shortness of breath you should go see your pulmanologist and have them check for fluid build up around your lung(s).
If you have not had biomarker testing done I would ask for it.  In my opinion the targeted therapy determined from the biomarker testing is the right approach.  By design it goes after the genetic code that is the engine for the cancer you have.  
BTW-  the Thoracentisis procedure is not a big deal.  Seems a little scarry when you hear about it.  If you have fluid build up, you will notice a major improvement in breathing once its removed.  Check Youtube for a video of the Thoracentisis procedure.
Don’t underestimate the power of prayer.