Eagle13

When I was on Durva they told me alcohol was okay. Like your Onc said, moderation.  If you like chocolate beer I have a couple recommendations
”Sweet Baby Jesus Peanut Butter Chocolate Stout” - DuClaw brewing
or
Samuel Smith’s “Organic Chocolate Stout”
 
cheers 🍻
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Well said Michelle!

Well said Michelle!

Hi Rosann & DFK
I have the ALK driver mutation and maybe I can she some light from mutant land pertaining biomarkers, TKI & Immunotherapy
The “standard biomarker panel” consists of EGFR, ALK, ROS1 & a PDL-1 percentage. There’s quite a controversy as to when the standard panel is done if the cancer is Stage III or above where the goal of treatment is with curative intent  
Payment for biomarker testing is Sometimes driven by the health insurance medical necessity guidelines to only pay  at Stage IV.  In an ideal world everyone with adenocarcinoma should be tested for a driver mutation  but it’s expensive (close to $6k).  
The “standard panel” is considered insufficient for treatment planning purposes since there are many other driver mutations. The gold standard is called (get ready) comprehensive biomarker, a full panel, molecular testing, next generation sequencing, or oncogene testing  (whew).  All means the same thing.   While there are a few companies in the US who perform this analysis, most physicians use Foundation One in Boston.
Another reason for comprehensive testing is greater sensitivity, there are two ALK tests. The standard panel can turn up indeterminate.  It’s important to know which ALK test was completed. 
TKI are inhibitors in pill form used to put the brakes on a mutation. Durva and Keytruda are classified as a immunotherapy which is a “targeted “therapy for those with a high PDL-1 percentage.  In other words there are two types of targeted therapies: TKIs and Immunotherapy. 
TKIs and Immunotherapy in some cases do not mix (pneumonitis).  This is true for the ALK inhibitors.    “Mutants” don’t respond to Immunotherapy even if there is a high PDL-1 (no one knows why).  I don’t think this is anything you have to worry about now.
All this stuff is very complicated, research is emerging so quickly anything more than six months old is already out of date.  Dr Google is not our friend.   
A great resource is the Lung Cancer Living Room on YouTube by the GO2 Foundation. Last week the key presentation was on Immunotherapy.  Even though it’s two hours you might find it to be worth your time.
Hope this helps to clarify some.
Keep up the fight!
Michelle
 
 
 
 
 

Barb,
I developed a pleural effusion while on Durva.  Ultimately, I was taken off the Durva because of it.   The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me.  I had 4 Thoracentisis done removing 6 liters of fluid from my left lung.  The fluid was cancerous and moved me from 3B to stage IV.   That was last July,2018.  I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday.  I am considered stable with no progression.  There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all.   I recommend asking for a biomarker test.  There are many new treatments beyond immunotherapy.
 
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Barb,
I developed a pleural effusion while on Durva.  Ultimately, I was taken off the Durva because of it.   The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me.  I had 4 Thoracentisis done removing 6 liters of fluid from my left lung.  The fluid was cancerous and moved me from 3B to stage IV.   That was last July,2018.  I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday.  I am considered stable with no progression.  There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all.   I recommend asking for a biomarker test.  There are many new treatments beyond immunotherapy.
 
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Yes Rower Michelle!.... This is the new protocol now....just as the durva was. 
Gotta wonder..... how similar are Tecentriq and durvalumab considering they target the same thing? Just like Keytruda and durvalumab….🤔 
 

I’m willing to sell tickets to that show down tomorrow!  Anyway, I’m looking at the June 2019 American Society of Oncology Association. (ASCO) abstracts.  It appears as if your medical team is humming along with the new chemo immunotherapy protocol. Typically administered when there is no PDL-1 or targeted mutation.  Early studies suggest good results in PFS.  
Ask the doc to show you which abstract is most applicable and have them provide you with a copy.  Sounds like this is going to be worth it in the long run.  
Good luck-lock and load.  

Kleo,
Did they do the full biomarker tests?   I think I would ask for another full test.  It can be done with blood.
https://www.ncbi.nlm.nih.gov/m/pubmed/29413057/
praying for the best 
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Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups.  I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected.  The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment.
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Spot on! I use a large 3 ring binder to keep everything together and take it with me when I go to the Dr for checkups.  I also ask for a printed copy of reports and get the CD/DVD of the scans or other electronic data collected.  The disks have come in very handy when I see someone like my pulmonologist so he can see them without having to search during my appointment.
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There are breakthroughs in treatment taking place everyday.   This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions.  Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice.  It has made a world of difference for me. 
Forums like this one and other focus groups you can join are a wealth of information.  Be sure and do your own verification on things you learn.
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There are breakthroughs in treatment taking place everyday.   This is why its critical that you stay personally informed about treatment and ask your doctor detailed questions.  Don’t be afraid to make an appointment with a no kidding expert who eats and sleeps your type of cancer in their daily practice.  It has made a world of difference for me. 
Forums like this one and other focus groups you can join are a wealth of information.  Be sure and do your own verification on things you learn.
🦅

Hello Opal,
The Durvalamb did not work for me.  Even though I was given 8 infusions before they stopped due to my Pleural Effusion.  I had no PD-L1 test before the immunotherapy.  It would shown from the beginning it would not have worked.   That switched me from stage 3b to stage 4.  Biomarker tests were done on the fluid that was pulled via Thoracentisis.  I went to a specialists with the biomarker test results and they put me on Tagrisso.  My mutation is EGFR exxon 19 deletion per the tests.  I have been on Tagrisso now for 218 days (~7 months).  I have had several CTs and 2 MRIs and the results have shown no progression, the pleural effusion is gone, there is reduction in size of some of the lymph nodes and I am considered stable.  Yes, there are some side effects from the Tagrisso but, I feel better every day.   I am also aware that the type of cancer I have will eventually figure out the Tagrisso and will progress again.  Discoveries are being made everyday.  I am hopeful that there will be some other advancement for my treatment when the Tagrisso’s time is up.  
There are several different mutations that can come back from the biomarker testing.  I am fortunate enough to have been EGFR that has several options for treatment.  
Stay positive, don’t be afraid to ask a true specialist for their opinion, never stop believing in the power of prayer.
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Hello Opal,
The Durvalamb did not work for me.  Even though I was given 8 infusions before they stopped due to my Pleural Effusion.  I had no PD-L1 test before the immunotherapy.  It would shown from the beginning it would not have worked.   That switched me from stage 3b to stage 4.  Biomarker tests were done on the fluid that was pulled via Thoracentisis.  I went to a specialists with the biomarker test results and they put me on Tagrisso.  My mutation is EGFR exxon 19 deletion per the tests.  I have been on Tagrisso now for 218 days (~7 months).  I have had several CTs and 2 MRIs and the results have shown no progression, the pleural effusion is gone, there is reduction in size of some of the lymph nodes and I am considered stable.  Yes, there are some side effects from the Tagrisso but, I feel better every day.   I am also aware that the type of cancer I have will eventually figure out the Tagrisso and will progress again.  Discoveries are being made everyday.  I am hopeful that there will be some other advancement for my treatment when the Tagrisso’s time is up.  
There are several different mutations that can come back from the biomarker testing.  I am fortunate enough to have been EGFR that has several options for treatment.  
Stay positive, don’t be afraid to ask a true specialist for their opinion, never stop believing in the power of prayer.
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Ask for a biomarker test.  At a minimum get a PDL-1 test to see if you are a good candidate for the Durvalamb.  The biomarker test is really the way to go.  I found out after 8 treatments that I was not a good candidate for Durvalamb since there was no PDL-1 test prior to starting treatment.  That is when a biomarker test was done.  I have been on targeted therapy now for 150 days taking Tagrisso since I am EGFR mutation.  I was 3b went to stage 4 while on the Durvalamb.  The targeted therapy has stopped the progression of the cancer and reversed it in some of the lymph nodes based on measurements from CT scans.   You are spot on about the power of prayer.  
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Bob -  that was exactly how I was prescribed Imfinzi without a PD-L1 test.  Unfortunately,  it did not work for me.  I can’t emphasize enough how important the bio-marker testing was for me.  In hind sight, I believe the bio-marker test should be done before any treatment is started for NSCLC.  My bio-marker test was not done until the Imfinzi showed it was not working for me and I ended up with a Pleural Effusion.
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Bob -  that was exactly how I was prescribed Imfinzi without a PD-L1 test.  Unfortunately,  it did not work for me.  I can’t emphasize enough how important the bio-marker testing was for me.  In hind sight, I believe the bio-marker test should be done before any treatment is started for NSCLC.  My bio-marker test was not done until the Imfinzi showed it was not working for me and I ended up with a Pleural Effusion.
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Kleo,
That is wonderful news! Congratulations! 
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Kleo- I had 4 thoracentisis procedures that involved a large needle stuck through my back into the pleura around my left lung.  They drained over 6 liters of fluid from my left lung through these.  They did a local anesthesia each time.  I watched the procedure on the sonogram live.  The initial stick was similar to the stick for bloodwork.  It was surprisingly non-eventful.   
I suspect the needle biopsy will be similar and actually less of an event.  I’m sure they will give you a lidacane shot to numb the area that will actually hurt worse than the procedure. 🙂
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Took ~2 weeks for my biomarker test to come back.  Absolutely a game changer for me.  I take a Tagrisso pill once a day since I am EGFR.  No more infusions since Tagrisso started and my port is being removed next week.  This is working for me.  I pray you get the right treatment to fight your mutation.
Biomarker test was done on my fluid from the thoracentisis.  It was essentially blood.
BTW - I would ask for a bronchoscopy to check to make sure your lymph nodes are normal.  Thats what they biopsied the first time for me.  They didn’t make it to the small nodule that they were after because the lymph node looked abnormal.
Merry Christmas and Happy Holidays! 🌲🎅🏻☃️❄️
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Took ~2 weeks for my biomarker test to come back.  Absolutely a game changer for me.  I take a Tagrisso pill once a day since I am EGFR.  No more infusions since Tagrisso started and my port is being removed next week.  This is working for me.  I pray you get the right treatment to fight your mutation.
Biomarker test was done on my fluid from the thoracentisis.  It was essentially blood.
BTW - I would ask for a bronchoscopy to check to make sure your lymph nodes are normal.  Thats what they biopsied the first time for me.  They didn’t make it to the small nodule that they were after because the lymph node looked abnormal.
Merry Christmas and Happy Holidays! 🌲🎅🏻☃️❄️
🦅

Took ~2 weeks for my biomarker test to come back.  Absolutely a game changer for me.  I take a Tagrisso pill once a day since I am EGFR.  No more infusions since Tagrisso started and my port is being removed next week.  This is working for me.  I pray you get the right treatment to fight your mutation.
Biomarker test was done on my fluid from the thoracentisis.  It was essentially blood.
BTW - I would ask for a bronchoscopy to check to make sure your lymph nodes are normal.  Thats what they biopsied the first time for me.  They didn’t make it to the small nodule that they were after because the lymph node looked abnormal.
Merry Christmas and Happy Holidays! 🌲🎅🏻☃️❄️
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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.
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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.
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