Rower Michelle

Hi Barb-
The Durva Road isn’t an easy one for sure.  The treatment break will hopefully help relief some of the pain which can be debilitating physically and emotionally.  You’ve got serious mo-jo so carry on- Jersey strong. 
Michelle

Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
 
Don't ANYONE tell my doc I was Googling again! 🤐

For all that routinely post or read this forum, while I hope I am not making a mistake posting it here, but a fellow former Durvalumab member isabelle49 who posted in here several times I believe is apparently nearing the end of her fight and chosen to enter home hospice. You may want to read her update posted in "member updates" over the last several days and send her your thoughts and prayers. Forgive me if I shouldn't post this here, but felt that everyone should know.

Barb-
Glad to seen the Jersey spirit alive and well. Skip the opiates onward with  roids .  Get some rest- no working through this one... hang tight.  
 

Not convinced what sent me to the ER last weekend was/is pleuritis. Saw the onc’s PA on Monday, put me on 10mg prednisone for 7 days and a muscle relaxer. Seemed to think the pain is muscle pain. Except for the pain being gone when I inhale and the muscle spasms gone, still hurts when I move upper right shoulder/arm and back. Heat helps temporarily. Anybody have muscle pain issues as a side effect?  I almost want to take a vacation from Imfinzi to see if all this goes away. CT and X-ray were all negative at the ER 😶 

So sorry Barb- not a fun place to be hanging out in.  Unexpected scans are unnerving. Keep us posted. 

So sorry Barb- not a fun place to be hanging out in.  Unexpected scans are unnerving. Keep us posted. 

Hi Ron
You are most welcome!  I’m sorry that you were not tested right from the beginning, however it’s unlikely to have changed the treatment plan as Alectiinib is rarely used in Stage III. 
I was able to obtain Foundation One biomarker testing at no cost after the insurance company issued several denials.  There is a way for patients to be their own advocate and not go bankrupt. 
I’m not sure if you’re using commercial employer insurance, if so then Genentech has a $5 co-pay program.  Their website isn’t easy to use, but you can sign up for email alerts.  The goodie bag will come in the mail a few weeks after the first prescription. 
Please do not rely on Dr Google, the ALK research is moving fast so anything more than six months old is already out of date. A better place is the GO2 Foundation, Lung Cancer Living Room on YouTube.  There aren’t too many ALKs so you’ve got to patiently wait and listen to the whole program. 
As for the side effects, there is a document on the ALKPositive.org highlighting all of them with potential solutions.  
Almost everybody gets stepped down in the first two months due to elevated liver enzymes. Not to worry, this drug is so new that the dosing is one size fits all at the maximum allowable.  Not to worry if a dosing adjustment is needed.  
I don’t do any any social media- please let me know if there are any valuable nuggets. 
I had to meet a number of our “brother & sisters this summer”, they’re awesome.  
So happy continued trails to our Durva cousins! 
Michelle

Hi Ron
You are most welcome!  I’m sorry that you were not tested right from the beginning, however it’s unlikely to have changed the treatment plan as Alectiinib is rarely used in Stage III. 
I was able to obtain Foundation One biomarker testing at no cost after the insurance company issued several denials.  There is a way for patients to be their own advocate and not go bankrupt. 
I’m not sure if you’re using commercial employer insurance, if so then Genentech has a $5 co-pay program.  Their website isn’t easy to use, but you can sign up for email alerts.  The goodie bag will come in the mail a few weeks after the first prescription. 
Please do not rely on Dr Google, the ALK research is moving fast so anything more than six months old is already out of date. A better place is the GO2 Foundation, Lung Cancer Living Room on YouTube.  There aren’t too many ALKs so you’ve got to patiently wait and listen to the whole program. 
As for the side effects, there is a document on the ALKPositive.org highlighting all of them with potential solutions.  
Almost everybody gets stepped down in the first two months due to elevated liver enzymes. Not to worry, this drug is so new that the dosing is one size fits all at the maximum allowable.  Not to worry if a dosing adjustment is needed.  
I don’t do any any social media- please let me know if there are any valuable nuggets. 
I had to meet a number of our “brother & sisters this summer”, they’re awesome.  
So happy continued trails to our Durva cousins! 
Michelle

Hi Ron!
I’m sorry I missed your post. 
You’re biomarker testing is actually wonderful news! I am ALK Positive too. There are five FDA approved inhibitors available to us with a very high quality of life. Kleo was spot on when she said oncologists get excited about targeting mutations.  
 
I’ve been on Alectiinib for almost a year with excellent results.  I wonder if your doc wants to try the Alectiinib first and save the radiation therapy for a later time.  The Alectiinib knocked out my Mets after a few weeks. The side effects are very manageable, most of us have had some issues with fatigue, weight gain & elevated liver enzymes.  
There are additional resources for ALK Positive patients- a vibrant closed FaceBook Community,       ALKies Unlimited (FB) and ALK Fusion (FB) Website: www.alkpositive.org and YouTube Channel with video feeds from the ALK Positive Summit in Atlanta last August. 
The next ALK Summit has a save the date for July 31-August 2nd (location TBD).  
The leading ALK researchers are here in the US- Alice Shaw MD at Mass General, and Ross Camidge MD University of Denver.
During the Summit Dr Shaw stated there was no better time to be hopeful with lung cancer than today, the research is accelerating survival rates significantly.  In addition to the inhibitors, research for a vaccine and cellular therapy is underway.  
Welcome to mutant land where life is good! 
Michelle

Hi Ron
You are most welcome!  I’m sorry that you were not tested right from the beginning, however it’s unlikely to have changed the treatment plan as Alectiinib is rarely used in Stage III. 
I was able to obtain Foundation One biomarker testing at no cost after the insurance company issued several denials.  There is a way for patients to be their own advocate and not go bankrupt. 
I’m not sure if you’re using commercial employer insurance, if so then Genentech has a $5 co-pay program.  Their website isn’t easy to use, but you can sign up for email alerts.  The goodie bag will come in the mail a few weeks after the first prescription. 
Please do not rely on Dr Google, the ALK research is moving fast so anything more than six months old is already out of date. A better place is the GO2 Foundation, Lung Cancer Living Room on YouTube.  There aren’t too many ALKs so you’ve got to patiently wait and listen to the whole program. 
As for the side effects, there is a document on the ALKPositive.org highlighting all of them with potential solutions.  
Almost everybody gets stepped down in the first two months due to elevated liver enzymes. Not to worry, this drug is so new that the dosing is one size fits all at the maximum allowable.  Not to worry if a dosing adjustment is needed.  
I don’t do any any social media- please let me know if there are any valuable nuggets. 
I had to meet a number of our “brother & sisters this summer”, they’re awesome.  
So happy continued trails to our Durva cousins! 
Michelle

I know how you feel Barb! Just called my onc today after a six pound weight gain in less than two weeks. Here comes the lasix again.  It’s a grey day here in KC someone flipped the fall switch fast here. 
If the Wellbutrin doesn’t kick in within six weeks, ask for a psychiatric evaluation, there are newer more effective agents available. Hang in there. 

Ron....I think the docs get a little excited when they find a mutation. It gives them something to target!
Still reminds me of Professor X and his XMen though.😄 I personally have NO mutations. Nada. Not even a speck of PDL1. They don't know what to do with me!😏
What a tough call though....radiation or targeted therapy. I am like Tom with the radiation...big fan. I did the 5 day treatment and will say it definitely kicked my butt... so much more than the 30 day first treatment I had. But they were also aiming at the lung cancer- in my brain...I'm sure it's totally different!
Barb & Michelle....I actually gained a few pounds while on the Durva. And I'm not a weight gainer...I'm a twig. So I really don't know if the Durva was the culprit or just the steroids they had me on. Both maybe!
 
 

Thanks Tom, I knew you would answer that.    
Told the onc about my feet cramping up for a full day after the last treatment, she said she hadn’t heard that one before. She confirmed what I had been saying all along-this stuff is still so new, they are still learning about it. So we are still blazing this trail fellow Durvas!😎

I know how you feel Barb! Just called my onc today after a six pound weight gain in less than two weeks. Here comes the lasix again.  It’s a grey day here in KC someone flipped the fall switch fast here. 
If the Wellbutrin doesn’t kick in within six weeks, ask for a psychiatric evaluation, there are newer more effective agents available. Hang in there. 

I know how you feel Barb! Just called my onc today after a six pound weight gain in less than two weeks. Here comes the lasix again.  It’s a grey day here in KC someone flipped the fall switch fast here. 
If the Wellbutrin doesn’t kick in within six weeks, ask for a psychiatric evaluation, there are newer more effective agents available. Hang in there. 

Good to hear from you Kleo!  Maybe you’ll finally get an immuno goodie back on the double combo?? You’re an inspiration girl! Keep on rockin’!!!

Thoughts & prayers are with you Ron.  Waiting sucks, hopefully the next treatment plan will kill the little bugger.  

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
 
 
 
 
 

Hi Michelle!
I never get the goodie bags!😣 All I got was a home test for my stool. Ridiculous crap 🤣

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
 
 
 
 
 

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
 
 
 
 
 

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
 
 
 
 
 

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