Most oncologists test for mutations when a patient is a never-smoker or has a remote smoking history. Here is a podcast on the subject of “Which patients do you send molecular marker testing for, and what tests do you seek?”: http://cancergrace.org/lung/2013/08/15/riely-which-patients-markers-mol… (there are links to additional podcasts on that subject listed as "Related Posts".
The current clear standard of care is testing for an EGFR mutation and ALK rearrangement for people with a metastatic non-squamous NSCLC, and some would test for a KRAS mutation. If all of these are negative, many would now test for a ROS1 rearrangement, particularly in a lifelong never-smoker with an adenocarcinoma -- ROS1 being quite uncommon (about 1-2%), not yet a standard of care, but potentially "actionable" with treatment with XALKORI (crizotinib).
The short answer is no, at least not yet. The link below and the "related posts" that follow are the latest (and earliest) discussions on the subject. I hope your mom the doing alright.
Janine. Thank you. Haven't had a chance to look at Jim's links and will look at yours. Mom passed aug 2 and I am haunted by doc not checking EGFR after it metastisized in jan 13. Changed onc and first thing he did was check it (may). Mom was responding beautifully to tarceva and then we think she got lepto. Tarceva cleared her brain mets. Confirmed via MRI and her liver was showing positive response but didn't make it to her CT on July 30.
I'm sorry to hear that. People with EGFR mutations who respond to Tarceva still seem to be at real risk for brain mets and LMC. Ideally, we'd prefer to know if someone has an EGFR mutation as soon as feasible when a patient has advanced non-squamous NSCLC, but it's not standard of care to check for mutations in earlier stage NSCLC or advanced squamous NSCLC at this time. Sometimes, if there isn't tissue readily available and it's felt there's a need to get going on treatment soon, it's very sensible to start with chemo rather than delay treatment too long while waiting to get a biopsy and send it off for molecular testing. That process may potentially lead to a delay in treatment of several weeks.
In our case, there was time and tissue available; the doctor did not prescribe any additional treatment and did not check for the mutation for a perfectly 'profiled' candidate. He missed it and she lost out. I respectfully respond to this so that other people know to ASK for the testing. I wish i had known.
Leah, I'm sorry and embarrassed I missed your signature as being Leah. As I mentioned in another post to you, your description could have been me talking about my mom though she didn't have cancer. While I think her doctor could have provided better care for full recovery that would have turned her course around, she didn't. I know too that I should have noticed something when caring for her in her last month but I didn't.
I think I trained my brain to be glad for my mom that she didn't suffer longer, that she had a full life up to her last couple of months, and her children were with her. Not many people in this world can say that about their going. The only good reason to hold on to the suspicions about the doctor not giving the care your mom should have had is to try and change that doctor's practices for his/her future patients. I imagine that's a pretty tall order given your mom's case. This is an absolutely horrible horrible disease and there's just no way out.
Otherwise you did the best you could do for your mom, she knew it and loved you for it and I hope hope that you can begin to embrace the memories of her living her life. I know that's what she would want.
You're so right about people being their own advocate and educating themselves about what they need. It's what Grace is all about and it only gets more and more important everyday. Thank you Leah.
Peace out
Janine,
Please do not think twice about it; there are many of us out here :(
Thank you for you kind and supportive words;
I'm in the 'anger' stage of my grief and have time to digest the tornado that we went through;
Many things could have been done better. I am of the opinion that things should always improve (background in software) and trained in continuous process improvement. If a simple checklist was done for these docs who are general oncologists ... did you check x,y,z? then perhpaps the next patient won't get missed. This is the science part of medicine ..., create a process and use it every time to prevent gross oversight. No intent to step on toes on this forum. This has been an invaluable resource for me and Dr. West has been beyond generous with his time. But as a problem solver, when i see one, i like to fix it. And that is what i will attempt to do. Warm wishes to you,
Leah
For completeness, I wonder if identifying a BRAF mutation should also be added to the list. My dad has that mutation and is benefitting from the experimental MEK inhibitors he is on.
So sorry to learn about your Mom's passing. It's a shame you did not learn she was EGFR positive sooner; perhaps she would have survived longer, but it's doubtful it would have prevented the LMC, maybe only slowed it's progression. Sounds like you loved her very much and I hope she passed peacefully. My sincerest condolences to you and your family. Bob
I understand your anger and the "what ifs". I did that after my husband passed. His first onc didn't do mutation testing either and when we switched dr's the new onc wanted to but not enough tissue was left for testing. I had a lot of anger about the fact that it had not been done but eventually learned to let go of it as he didn't fit the profile. I do hope you find peace and comfort in the days ahead...
Luke, Bob, Marisa, and Dr. West,
Appreciate your condolences. It is a process and a difficult one. I will find peace, its just down the road a bit at this point.
Bob, have been thinking about you and your wife; hope you are holding up ok.
Warm regards,
Leah
I\'m so sorry to hear of your Mom\'s passing. I hope that in time you can find a way to focus on all the good times you shared with her, but I know it is a difficult process.
As far as molecular testing, my wife was EGFR positive (exon 19) and was treated with Tarceva, but that did not prevent the development and progression of LMC, even after using a pulsed Tarceva regimen. As Dr. West said, despite the presence of a mutation and good response to Tarceva, it seems to be effective against LMC for a only a very limited number of patients. Your Mom doesn\'t appear to have been one of those patients, since LMC appeared and progressed while she was taking Tarceva. And as I\'ve written in a previous post in another thread, keeping the rest of the cancer at bay while LMC symptoms are getting worse is at best a mixed blessing - the patient may survive longer only to suffer from the increasingly awful effects of the LMC. (previous post at http://cancergrace.org/topic/leptomeningeal-metastases-valerie-harper#p… )
I realize that you would have preferred to have the chance to treat with Tarceva earlier, but it seems very likely that it would not have provided a real benefit. I can say from my own experience that the problem with second guessing the course of treatment is that we know the bad outcome of the path taken, but we only see the best possibilities of the path not taken.
My thoughts are with you that you can reach some level of peace and comfort.
As for grief stages, you don't need to explain why this or that. I'm a big advocate for people to grieve their own way. I could cycle through the stages in a matter of minutes and never know where I might catch myself, move through it backwards and forwards and inside out. A good friend noted my ability to weep uncontrollably for 10 seconds at a time then stop on a dime and move on with what we were doing or talking about. You will slowly move out of the all consuming grief in time, as you know.
Too I wanted to mention (the if xyz then what you mentioned earlier) there are algorithms and flowcharts oncologists use to help with treatment planning. My husband's onc showed me one that matched my husband's predicament at the time (and matched the blog posts about pancoast tumors by Dr. West :)). I was happy to know we were on the same page, or more pointedly I had the right understanding.
As I recall it was a national institute of health or some such network that is a rather pricey subscription based access that's for oncologists.
Jim - Very wise words; thank you for taking the time to share. And very true. The grass greener for sure. But a blatant and obvious omission is hard to digest and shouldn't happen, imo. While I recognize everyone makes mistakes, that is exactly why let's say engineers working on the space shuttle (I live in Huntsville), have checklists. Again, I'm trained in process improvement and look back on this tornado as one that could have been improved - very specifically with regard to the omission and medicare/rehabilitation fiasco we endured.
Gratefully, for those headed down this path, hospice was one piece that for us worked beautifully and provides an amazing service to the terminally ill.
And Janine - you as well for your continued support. I do feel that way and I do cry for 10 seconds here and there; your note made me cry (good, cleansing tears :)) Living out of town, I was not involved in the day to day meetings with Mom's doctors, until I started seeing things go south quickly after the brain tumor. I then was primary for her care and fortunately the doctors were gracious enough to let me be on speaker phone when I wasn't in town I was not aware of the 'roadmaps' but makes sense; don't know if that is standard but certainly should be with the pace and complexity of these issues.
Coming out of this, I do have concern for a general oncologist being able to keep up with the very quickly changing information - just seems more than one can handle. So if anyone new out there reading this, I would absolutely seek out a lung cancer oncologist if at all possible.
I agree completely with your thinking. The thoracic oncologists here on GRACE have often noted that they have trouble getting to see all the lung cancer presentations at the annual ASCO conference, and can't imagine how a general oncologist can come close to remaining up-to-date on the developments in many different types of cancer. And that's why Dr. West started GRACE - so that patients could be as educated as possible. A highly-motivated patient or caregiver can often uncover information that even a well-informed oncologist is not aware of.
As far as sharing my experiences, doing so often brings to mind unhappy memories, but if it is helpful to you or others it is worth it. And for me, it is part of the continuing process of healing, nearly two years after my wife passed. I think it's better to bring those memories to the forefront at times rather than leave them in the background. But if I or anyone else on this site (or elsewhere) shares with you their process of grieving, please take it as just one example of how it can be done; as Janine said everyone needs to find their own way to peace and acceptance. If you look at the link at the end of my signature, you can see that I have been unusually fortunate that I found this surprising path that led me to new found happiness. It's not a path I had sought or would ever have expected to find, so I certainly wouldn't tell anyone that they should look for something similar. As a psychologist friend of mine told me during my wife's illness, the important thing is to talk to someone with an empathetic ear (empathy is much more helpful than sympathy), whether a family member, friend (including online friends!), clergy or professional counselor. In the presence of someone who cares, cry when you need to, laugh whenever you can.
Reply # - September 5, 2013, 08:02 PM
Reply To: EGFR testing
daisy,
Most oncologists test for mutations when a patient is a never-smoker or has a remote smoking history. Here is a podcast on the subject of “Which patients do you send molecular marker testing for, and what tests do you seek?”: http://cancergrace.org/lung/2013/08/15/riely-which-patients-markers-mol… (there are links to additional podcasts on that subject listed as "Related Posts".
JimC
Forum moderator
Reply # - September 5, 2013, 09:27 PM
Reply To: EGFR testing
The current clear standard of care is testing for an EGFR mutation and ALK rearrangement for people with a metastatic non-squamous NSCLC, and some would test for a KRAS mutation. If all of these are negative, many would now test for a ROS1 rearrangement, particularly in a lifelong never-smoker with an adenocarcinoma -- ROS1 being quite uncommon (about 1-2%), not yet a standard of care, but potentially "actionable" with treatment with XALKORI (crizotinib).
-Dr. West
Reply # - September 6, 2013, 08:55 AM
Reply To: EGFR testing
Thank you,
Is it standard to test after the cancer has metastisized? Do you test immediatly upon diagnosis of someone fitting the profile?
Reply # - September 6, 2013, 10:00 AM
Reply To: EGFR testing
The short answer is no, at least not yet. The link below and the "related posts" that follow are the latest (and earliest) discussions on the subject. I hope your mom the doing alright.
All best,
Janine
http://cancergrace.org/lung/2013/04/27/juergens-targeted-therapy-adjuva…
Reply # - September 6, 2013, 10:26 AM
Reply To: EGFR testing
Janine. Thank you. Haven't had a chance to look at Jim's links and will look at yours. Mom passed aug 2 and I am haunted by doc not checking EGFR after it metastisized in jan 13. Changed onc and first thing he did was check it (may). Mom was responding beautifully to tarceva and then we think she got lepto. Tarceva cleared her brain mets. Confirmed via MRI and her liver was showing positive response but didn't make it to her CT on July 30.
Reply # - September 6, 2013, 12:01 PM
Reply To: EGFR testing
I'm sorry to hear that. People with EGFR mutations who respond to Tarceva still seem to be at real risk for brain mets and LMC. Ideally, we'd prefer to know if someone has an EGFR mutation as soon as feasible when a patient has advanced non-squamous NSCLC, but it's not standard of care to check for mutations in earlier stage NSCLC or advanced squamous NSCLC at this time. Sometimes, if there isn't tissue readily available and it's felt there's a need to get going on treatment soon, it's very sensible to start with chemo rather than delay treatment too long while waiting to get a biopsy and send it off for molecular testing. That process may potentially lead to a delay in treatment of several weeks.
-Dr. West
Reply # - September 6, 2013, 01:15 PM
Reply To: EGFR testing
In our case, there was time and tissue available; the doctor did not prescribe any additional treatment and did not check for the mutation for a perfectly 'profiled' candidate. He missed it and she lost out. I respectfully respond to this so that other people know to ASK for the testing. I wish i had known.
Reply # - September 6, 2013, 01:34 PM
Reply To: EGFR testing
Leah, I'm sorry and embarrassed I missed your signature as being Leah. As I mentioned in another post to you, your description could have been me talking about my mom though she didn't have cancer. While I think her doctor could have provided better care for full recovery that would have turned her course around, she didn't. I know too that I should have noticed something when caring for her in her last month but I didn't.
I think I trained my brain to be glad for my mom that she didn't suffer longer, that she had a full life up to her last couple of months, and her children were with her. Not many people in this world can say that about their going. The only good reason to hold on to the suspicions about the doctor not giving the care your mom should have had is to try and change that doctor's practices for his/her future patients. I imagine that's a pretty tall order given your mom's case. This is an absolutely horrible horrible disease and there's just no way out.
Otherwise you did the best you could do for your mom, she knew it and loved you for it and I hope hope that you can begin to embrace the memories of her living her life. I know that's what she would want.
Namaste,
Janine
Reply # - September 6, 2013, 01:39 PM
Reply To: EGFR testing
You're so right about people being their own advocate and educating themselves about what they need. It's what Grace is all about and it only gets more and more important everyday. Thank you Leah.
Peace out
Reply # - September 6, 2013, 02:45 PM
Reply To: EGFR testing
Janine,
Please do not think twice about it; there are many of us out here :(
Thank you for you kind and supportive words;
I'm in the 'anger' stage of my grief and have time to digest the tornado that we went through;
Many things could have been done better. I am of the opinion that things should always improve (background in software) and trained in continuous process improvement. If a simple checklist was done for these docs who are general oncologists ... did you check x,y,z? then perhpaps the next patient won't get missed. This is the science part of medicine ..., create a process and use it every time to prevent gross oversight. No intent to step on toes on this forum. This has been an invaluable resource for me and Dr. West has been beyond generous with his time. But as a problem solver, when i see one, i like to fix it. And that is what i will attempt to do. Warm wishes to you,
Leah
Reply # - September 6, 2013, 08:04 PM
Reply To: EGFR testing
I am truly sorry for your loss Leah.
For completeness, I wonder if identifying a BRAF mutation should also be added to the list. My dad has that mutation and is benefitting from the experimental MEK inhibitors he is on.
Reply # - September 6, 2013, 08:51 PM
Reply To: EGFR testing
Leah
So sorry to learn about your Mom's passing. It's a shame you did not learn she was EGFR positive sooner; perhaps she would have survived longer, but it's doubtful it would have prevented the LMC, maybe only slowed it's progression. Sounds like you loved her very much and I hope she passed peacefully. My sincerest condolences to you and your family. Bob
Reply # - September 7, 2013, 11:51 AM
Reply To: EGFR testing
Leah,
I'm very sorry to hear of your mom's passing.
I understand your anger and the "what ifs". I did that after my husband passed. His first onc didn't do mutation testing either and when we switched dr's the new onc wanted to but not enough tissue was left for testing. I had a lot of anger about the fact that it had not been done but eventually learned to let go of it as he didn't fit the profile. I do hope you find peace and comfort in the days ahead...
Lisa
Reply # - September 7, 2013, 03:51 PM
Reply To: EGFR testing
I also wanted to add my sincere condolences, Leah.
-Dr. West
Reply # - September 7, 2013, 05:40 PM
Reply To: EGFR testing
Luke, Bob, Marisa, and Dr. West,
Appreciate your condolences. It is a process and a difficult one. I will find peace, its just down the road a bit at this point.
Bob, have been thinking about you and your wife; hope you are holding up ok.
Warm regards,
Leah
Reply # - September 8, 2013, 11:41 AM
Reply To: EGFR testing
Leah,
I\'m so sorry to hear of your Mom\'s passing. I hope that in time you can find a way to focus on all the good times you shared with her, but I know it is a difficult process.
As far as molecular testing, my wife was EGFR positive (exon 19) and was treated with Tarceva, but that did not prevent the development and progression of LMC, even after using a pulsed Tarceva regimen. As Dr. West said, despite the presence of a mutation and good response to Tarceva, it seems to be effective against LMC for a only a very limited number of patients. Your Mom doesn\'t appear to have been one of those patients, since LMC appeared and progressed while she was taking Tarceva. And as I\'ve written in a previous post in another thread, keeping the rest of the cancer at bay while LMC symptoms are getting worse is at best a mixed blessing - the patient may survive longer only to suffer from the increasingly awful effects of the LMC. (previous post at http://cancergrace.org/topic/leptomeningeal-metastases-valerie-harper#p… )
I realize that you would have preferred to have the chance to treat with Tarceva earlier, but it seems very likely that it would not have provided a real benefit. I can say from my own experience that the problem with second guessing the course of treatment is that we know the bad outcome of the path taken, but we only see the best possibilities of the path not taken.
My thoughts are with you that you can reach some level of peace and comfort.
JimC
Forum moderator
Reply # - September 8, 2013, 02:39 PM
Reply To: EGFR testing
I thought I'd written this but let me try again,
As for grief stages, you don't need to explain why this or that. I'm a big advocate for people to grieve their own way. I could cycle through the stages in a matter of minutes and never know where I might catch myself, move through it backwards and forwards and inside out. A good friend noted my ability to weep uncontrollably for 10 seconds at a time then stop on a dime and move on with what we were doing or talking about. You will slowly move out of the all consuming grief in time, as you know.
Too I wanted to mention (the if xyz then what you mentioned earlier) there are algorithms and flowcharts oncologists use to help with treatment planning. My husband's onc showed me one that matched my husband's predicament at the time (and matched the blog posts about pancoast tumors by Dr. West :)). I was happy to know we were on the same page, or more pointedly I had the right understanding.
As I recall it was a national institute of health or some such network that is a rather pricey subscription based access that's for oncologists.
xo
Reply # - September 8, 2013, 06:35 PM
Reply To: EGFR testing
Jim - Very wise words; thank you for taking the time to share. And very true. The grass greener for sure. But a blatant and obvious omission is hard to digest and shouldn't happen, imo. While I recognize everyone makes mistakes, that is exactly why let's say engineers working on the space shuttle (I live in Huntsville), have checklists. Again, I'm trained in process improvement and look back on this tornado as one that could have been improved - very specifically with regard to the omission and medicare/rehabilitation fiasco we endured.
Gratefully, for those headed down this path, hospice was one piece that for us worked beautifully and provides an amazing service to the terminally ill.
And Janine - you as well for your continued support. I do feel that way and I do cry for 10 seconds here and there; your note made me cry (good, cleansing tears :)) Living out of town, I was not involved in the day to day meetings with Mom's doctors, until I started seeing things go south quickly after the brain tumor. I then was primary for her care and fortunately the doctors were gracious enough to let me be on speaker phone when I wasn't in town I was not aware of the 'roadmaps' but makes sense; don't know if that is standard but certainly should be with the pace and complexity of these issues.
Coming out of this, I do have concern for a general oncologist being able to keep up with the very quickly changing information - just seems more than one can handle. So if anyone new out there reading this, I would absolutely seek out a lung cancer oncologist if at all possible.
Namaste,
Leah
Reply # - September 9, 2013, 09:18 AM
Reply To: EGFR testing
Leah,
I agree completely with your thinking. The thoracic oncologists here on GRACE have often noted that they have trouble getting to see all the lung cancer presentations at the annual ASCO conference, and can't imagine how a general oncologist can come close to remaining up-to-date on the developments in many different types of cancer. And that's why Dr. West started GRACE - so that patients could be as educated as possible. A highly-motivated patient or caregiver can often uncover information that even a well-informed oncologist is not aware of.
As far as sharing my experiences, doing so often brings to mind unhappy memories, but if it is helpful to you or others it is worth it. And for me, it is part of the continuing process of healing, nearly two years after my wife passed. I think it's better to bring those memories to the forefront at times rather than leave them in the background. But if I or anyone else on this site (or elsewhere) shares with you their process of grieving, please take it as just one example of how it can be done; as Janine said everyone needs to find their own way to peace and acceptance. If you look at the link at the end of my signature, you can see that I have been unusually fortunate that I found this surprising path that led me to new found happiness. It's not a path I had sought or would ever have expected to find, so I certainly wouldn't tell anyone that they should look for something similar. As a psychologist friend of mine told me during my wife's illness, the important thing is to talk to someone with an empathetic ear (empathy is much more helpful than sympathy), whether a family member, friend (including online friends!), clergy or professional counselor. In the presence of someone who cares, cry when you need to, laugh whenever you can.
Namaste,
JimC
Forum moderator