DrBee Posted August 1, 2018 Share Posted August 1, 2018 Hi friends! Since we got the initial path reports back today, I am officially moving myself over from the introduction forum. We now know that darling hubby has adenocarcinoma, waiting on scans this week for staging. I was disappointed to get the results of the serum test for the six most common mutations and find that apparently Lou doesn't have any. It'll be another 10 days or so until we get the results of the more comprehensive tissue testing. I'm wondering if anyone here knows if those tissue tests ever turn up a common mutation when it didn't turn up in the serum testing. Still keeping my fingers crossed for egfr or similar. Thank you all for basically being the only reason that I've kept my sanity for the last 5 days since we got the initial biopsy preliminary report.:-) Link to comment Share on other sites More sharing options...
Roz Posted August 1, 2018 Share Posted August 1, 2018 DrBee, Lots of people don't end up having a common mutation with a targeted treatment. But that doesn't mean that the docs won't come up with a treatment plan. So, once you get results, lots of people on this site will have experiences to share. What testing has been done up to this point? Ro Link to comment Share on other sites More sharing options...
DrBee Posted August 1, 2018 Author Share Posted August 1, 2018 9 minutes ago, Roz said: DrBee, Lots of people don't end up having a common mutation with a targeted treatment. But that doesn't mean that the docs won't come up with a treatment plan. So, once you get results, lots of people on this site will have experiences to share. What testing has been done up to this point? Ro Thank you Roz....i realize this, but hubby went through hell w his mom's chemo and is terrified of it. And yes I've gotten so much support already <3! testing this far: Ct, bronchoscopy. MRI tomorrow and PET Thurs, plus first appt w.oncologist on Thurs. He's half Asian, so was just hoping for EGFR. And wondering if tissue tests look for any of the same mutations as serum, and ever get diff results. Thank you for your quick reply! Link to comment Share on other sites More sharing options...
Roz Posted August 1, 2018 Share Posted August 1, 2018 Dr.Bee, Sounds like he has been having a lot of tests. Good luck with your first oncologist appointment and be prepared to take lots of notes. You will end up having plenty of questions and often the docs do not have the answers. I don't know about tissue tests vs. Serum...sorry. I think it's important to wait for the results and then you will be able to make informed decisions. If you hope for EGFR and then he doesn't have it, you will feel disappointed....depending what the MRI and PET scan show, there may be other decisions made my the oncologist too....Good luck with this excruciating and exhausting process.. I would bring another person with you to the oncologist appointment if you can..someone who can take the notes for you might be good. Ro Link to comment Share on other sites More sharing options...
DrBee Posted August 1, 2018 Author Share Posted August 1, 2018 2 hours ago, Roz said: Dr.Bee, Sounds like he has been having a lot of tests. Good luck with your first oncologist appointment and be prepared to take lots of notes. You will end up having plenty of questions and often the docs do not have the answers. I don't know about tissue tests vs. Serum...sorry. I think it's important to wait for the results and then you will be able to make informed decisions. If you hope for EGFR and then he doesn't have it, you will feel disappointed....depending what the MRI and PET scan show, there may be other decisions made my the oncologist too....Good luck with this excruciating and exhausting process.. I would bring another person with you to the oncologist appointment if you can..someone who can take the notes for you might be good. Ro Great advice, Ro! Thank you. Yes, my bff who just went through breast cancer is going to all key appts with us...and we're so grateful. And you're prob right...I was so hopeful for a mutation, so today was (another) hard day. Thank you for sharing your experience and wisdom! Link to comment Share on other sites More sharing options...
Steff Posted August 1, 2018 Share Posted August 1, 2018 DrBee, I understand your disappointment in testing not coming out the way you want it to. Hell, if testing came out the way we wanted it to, this site wouldn't exist! Lung cancer comes with lots of disappointments. Some heart wrenching and others just shoulder shrugging. I wanted to chime in regarding testing for mutations. I have no experience with serum biopsies, my mom has just had tissue biopsies, so I can help there. But my mom was diagnosed with NSCLC back in the "dark ages" - really only 3 years ago, but those were still the dark ages in the small town we live in. There were no testing for mutations, PD-1, PD-L1, etc. We were still in the caveman times of rip it out, burn it out, poison you to near death. And that is what happened. And my mom made it through fine. She had a lobectomy, then follow up chemo and radiation. So where does the disappointment come in? When she was found to have a recurrence, we were told the "classic" treatment options weren't the best ones. Cue the disappointment - obviously because lung cancer was back, but also because those classic methods weren't being recommended. They recommended this new stuff- immunotherapy. Although her tissue biopsies did not reveal any mutations, she had a high PD-L1 rate, over 90%. So that made her a great candidate for Keytruda. For an added bonus, they added 2 types of chemo for the first 6 sessions. It's been a year and so far her cancer isn't active. (Knock on wood since she has a CT next week to take a look at how things are going, don't want to jinx it!). A year doesn't sound like a lot in the big picture of things, but without 1 day, 1 week, 1 month, and 1 year, you cannot have more days, weeks, or years. We have to start somewhere. So, don't give up hope just because your husband may not have any mutations. There are still lots of treatment options and if 1 of them is immunotherapy, that is 1 more treatment option than what my mom had 3 years ago and she's still here. Take Care, Steff Link to comment Share on other sites More sharing options...
DrBee Posted August 2, 2018 Author Share Posted August 2, 2018 15 hours ago, Steff said: DrBee, I understand your disappointment in testing not coming out the way you want it to. Hell, if testing came out the way we wanted it to, this site wouldn't exist! Lung cancer comes with lots of disappointments. Some heart wrenching and others just shoulder shrugging. I wanted to chime in regarding testing for mutations. I have no experience with serum biopsies, my mom has just had tissue biopsies, so I can help there. But my mom was diagnosed with NSCLC back in the "dark ages" - really only 3 years ago, but those were still the dark ages in the small town we live in. There were no testing for mutations, PD-1, PD-L1, etc. We were still in the caveman times of rip it out, burn it out, poison you to near death. And that is what happened. And my mom made it through fine. She had a lobectomy, then follow up chemo and radiation. So where does the disappointment come in? When she was found to have a recurrence, we were told the "classic" treatment options weren't the best ones. Cue the disappointment - obviously because lung cancer was back, but also because those classic methods weren't being recommended. They recommended this new stuff- immunotherapy. Although her tissue biopsies did not reveal any mutations, she had a high PD-L1 rate, over 90%. So that made her a great candidate for Keytruda. For an added bonus, they added 2 types of chemo for the first 6 sessions. It's been a year and so far her cancer isn't active. (Knock on wood since she has a CT next week to take a look at how things are going, don't want to jinx it!). A year doesn't sound like a lot in the big picture of things, but without 1 day, 1 week, 1 month, and 1 year, you cannot have more days, weeks, or years. We have to start somewhere. So, don't give up hope just because your husband may not have any mutations. There are still lots of treatment options and if 1 of them is immunotherapy, that is 1 more treatment option than what my mom had 3 years ago and she's still here. Take Care, Steff Steff, excellent point about the testing. Right, everyone on this site has gotten results they sure as heck didn't want at some point. When I take a step back, I know I am being a bit of a baby. Especially given your needed perspective about how much things have changed in the last 2-3 years, and also how hugely blessed we are to live near excellent care. It gives me faith that there are going to be many many folks joining the ranks of Toms and Donnas in the world. I am also realising how very much I have to learn about the mutations (as I google PD-L1)....and that I should also probably slow down the research train on those until we get results. I read up SO much on EGFR because he's part Asian, and young...time I probably could have used more usefully - except now I can pass that info along to others. Hoping to one day pay forward the amazing mentorship I've gotten here and that is truly responsible for saving my sanity this past week. Bedtime before very early appt in the am for PET. Nervous about that and onco in the afternoon. But also ready to get this show on the road. We are part of this amazing community of survivors now, after all. Much love to you and your mom! Link to comment Share on other sites More sharing options...
DrBee Posted August 9, 2018 Author Share Posted August 9, 2018 I just realised I had posted updates to this elsewhere but not here. I was so keen to get going on treatment once we got our Stage IV diagnosis. We got ALK+ results on Monday, started Alectinib yesterday. Fingers crossed! Link to comment Share on other sites More sharing options...
LaurenH Posted August 10, 2018 Share Posted August 10, 2018 Hi, Bethany, We're glad that you have a treatment plan in place! Please continue to keep us posted and ask questions. I'm happy to provide you with additional information about LUNGevity's support and education resources as well. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Link to comment Share on other sites More sharing options...
DrBee Posted August 10, 2018 Author Share Posted August 10, 2018 1 hour ago, LaurenH said: Hi, Bethany, We're glad that you have a treatment plan in place! Please continue to keep us posted and ask questions. I'm happy to provide you with additional information about LUNGevity's support and education resources as well. We are here for you! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Thank you Lauren! Will do! It's been close to 48 hours since the first treatment and even super pessimist hubby said "you know maybe it's just because I know I'm on treatment but I think I feel a little bit better." YESSSS! And he has been definitely perkier with less coughing. So I'm not sure how much of that is in his head and how much of it is the treatment since it is still so early, but I am so grateful to have these options and to have this community. Also found the wonderful ALK+ group on Facebook which I know works with Lungevity as well! Link to comment Share on other sites More sharing options...
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