Barb1260 Posted December 29, 2018 Share Posted December 29, 2018 Having been staged at 3a and advised 6 weeks of radiation and chemo and then immunotherapy, I am now questioning everything after reading lots on here. They did not do biomarker testing, (at that point with the biopsy I didn't know much about it and never asked about it-that was only 7 days into this mess). So how do they know if a targeted therapy isn't what I need instead of radiation and chemo? Is it because it's 3a? I'm worried if I stop at this point, get a 2nd opinion and wait for the testing, that things will have spread and I will be worse off. I'm worried because my sister put off the rad. and chemo to get into a drug trial 2 years ago (which is now on the market) because she was scared of the chemo. By the time she started the trial drug, it had spread like wildfire so they had to stop it, do rad. and chemo to get it under control and could never get back in the trial. Just worried if I wait too long, I'll be going the same route as her. She only lasted 11 months. I'm thankful its nowhere else at this point and would like to get this dealt with asap but now I'm questioning everything. Am I crazy? Link to comment Share on other sites More sharing options...
Tom Galli Posted December 29, 2018 Share Posted December 29, 2018 Barb, No you are not crazy. All your second guessing is normal. Your combination chemo and radiation followed by immunotherapy is a first line standard-of-care treatment when surgery is not possible. In this treatment, radiation is the primary cancer killing agent and it will fry cancer cells. The chemotherapy is used to kill cancer cells in circulation through the blood and lymphatic systems. Immunotherapy is becoming a new add on to first line standard-of-care. So you are getting the latest in treatment modalities and this combination can be very successful. I am assuming, of course, that your doctors have ruled out surgery in your circumstance. I was guilty of third guessing; it is part of engineer's disease that I suffer -- never being satisfied until a perfect solution is devised. But, medicine is an art that uses science and in medicine and engineering, perfection is never possible. Starting your standard-of-care conventional radiation with weekly chemotherapy will also allow the pathology results to be processed. If you are a candidate for targeted therapy, there will be plenty of time to change course and substitute targeted therapy in place of immunotherapy. That also allows immunotherapy to be a reserve in the event targeted therapy does not arrest you disease. You may even be a surgical candidate after first line conventional radiation and chemotherapy. So you've got plenty of options in addition to effective first line treatment. Stay the course. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted December 29, 2018 Share Posted December 29, 2018 I'd start by asking your oncologist to explain to you why s/he hasn't done the biomarker testing. There might be a reason. All you've heard so far on that subject was from the nurse, if I recall correctly. You don't have to postpone your treatment for the sake of a second opinion. You can start with one type of treatment, in many cases, and then switch to something else if it appears, after a second opinion, to be more effective. Link to comment Share on other sites More sharing options...
Barb1260 Posted December 29, 2018 Author Share Posted December 29, 2018 Thanks to you both for replying. I’m going to find the answer to the biomarker testing if it kills me. I’m going to contact Monday. Tom-you have too much information in your brain-how do you turn it off? But thankful that you do. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 29, 2018 Share Posted December 29, 2018 Hi Barb I came in at Stage IV after my PET & immediately started the chemo/immunotherapy route while we waited for the bio marker results to come in. I had already tested negative for EGFR & was PDL-1 negative. It didn’t look too hopeful for me. My tumor was sent to Foundation One and it took three weeks to come back. That’s when we discovered I had the ALK mutation just before round 2 of the chemo combo. I’m really glad we didn’t wait. Asfor the second opinion, I would say if you need to have peace of mind then do it so you are not second guessing yourself. I’ve seen a Lung Cancer Living Room on YouTube from the Bonnie J Addario Foundation where they encourage second opinions & will help patients get one. My LC Peer Mentor was Stage IIIb & learned there can be different opinions with Stage III (I heard this in the Living Room as well). Tom & LexieCat have given great advice. You’ve got time to sort this through. It’s critically important that you have full confidence in the medical team, your treatment plan and your determination to beat this. Stay Jersey strong. Michelle Link to comment Share on other sites More sharing options...
MBinOregon Posted December 29, 2018 Share Posted December 29, 2018 Barb, Despite my being positive for ROS1, thus eligible for the targeted therapy, my 2nd onc insisted on regular chemo. Everything had moved super fast for me, so this was only after 2 weeks of my diagnosis and a few days after learning of having ROS1 positive LC. So despite my misgivings (my every so trusty gut feeling), I agreed and went ahead with the first infusion. During 4-5 hours of watching the drip, drip, drip of chemo, I had lots of time to think the whole thing and decided I am going for 3rd onc. The first appointment with my 3rd (and current) onc, he walked in, said his name and then first thing out of his mouth was "You're positive for ROS1, why are you not on targeted therapy?" and I knew he would do As Tom and Lexie mentioned, you could start with the "conventional" treatment while getting your gene testing done. One thing to note, though, depending on your insurance company, they *might* deny covering the targeted therapy if you've started with the conventional treatment - my onc was worried since I had gotten 1 chemo by the time I met him, but he did promise he'd argue/fight the insurance company for me. Luckily, he didn't have to. But something to keep in mind... MB Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 30, 2018 Share Posted December 30, 2018 Totally on point MB. Barb- When you track down the biomarker mystery with your doc be sure to connect with the insurance company. The molecular testing runs about $5800 and should be covered under most commercial insurance. Somehow I had my wits about me and contacted my insurance company case manager to ask about this testing I've never heard of. She hadn't; either. After doing some research I was advised the testing was covered and that was it- or so I thought, About a month later I received a call from Foundation One with the "good news" I had a 20% discount and how to I plan to pay the remaining $36000. WHAT??!! My insurance executive in me kicked in and told these people to file an appeal and take a walk. My insurance company is hitting me with a "failure to pre-certify" penalty and paid the benefit out of network since Foundation One is out of network. Boy, did I have a royal meltdown. Here's the inside baseball on this: Foundation One is the only game in town so the insurance company must pay the in network benefit as there are no alternative in network labs that provide this service. I contacted my employer's insurance advocate as well and am now awaiting the appeal determination. This is the long way of saying that unfortunately, it's a safe thing to micromanage your insurance company until the treatment plan is in full swing. Keep us posted, Michelle Link to comment Share on other sites More sharing options...
Barb1260 Posted December 30, 2018 Author Share Posted December 30, 2018 Wow-thanks for that info. And isn’t it the docs office to get precertification? I know you’re ultimately responsible but if the docs office didn’t they should pay for it-haha. how did it go from $5800 to $36k? Link to comment Share on other sites More sharing options...
LexieCat Posted December 30, 2018 Share Posted December 30, 2018 FWIW, this is why I switched to an insurance plan that offers out-of-network benefits during the last open-enrollment period. I'm not PLANNING on any recurrences, lol, but I decided that just in case I wanted to receive treatment out-of-network I wasn't completely hosed. Incidentally, my own doc didn't do biomarker testing, but that's mainly because I had surgery that was (hopefully) curative. I opted for no chemo, just semiannual scans. He said IF I ever had a recurrence, that's when they would look into the biomarker testing. That made sense to me. With luck, I will never need it. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 30, 2018 Share Posted December 30, 2018 Haha. Oops. Hyperactive typo! It’s $3600. You would think the provider would be responsible however in this case the insurance company produced a mystery manual that indicated patient responsibility for pre-cert. In the 20 years I worked for insurance companies I’ve never seen anything like this. We all seem to hit bumps in the insurance process. Everything can be appealed. Carry on! Link to comment Share on other sites More sharing options...
Barb1260 Posted December 31, 2018 Author Share Posted December 31, 2018 Aha-got the answer on the biomarker test. They don’t do it normally unless staged at 4 or above. So my plan is to start this process, and when I see the doc on the first chemo day I will speak to her and ask for it. I’m having a hunch the insurance company may have a say in it all. Either way, I don’t want to prolong killing off the little buggers so the path is a little clearer now. Happy New Year all. Link to comment Share on other sites More sharing options...
LexieCat Posted December 31, 2018 Share Posted December 31, 2018 Sounds reasonable to me. With any luck, the chemo/radiation will poison/nuke the heck out of your cancer! The targeted therapy, if available, can be in reserve. When do your treatments start? Link to comment Share on other sites More sharing options...
Barb1260 Posted December 31, 2018 Author Share Posted December 31, 2018 Meeting with radiologist on Wednesday and will set up a schedule. Still waiting for the appointment to get the port but the holidays may have something to do with that. Happy And healthy New Year to you great lady. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 31, 2018 Share Posted December 31, 2018 Hey Barb- I would push back on that assessment. My ALK peer mentor was Stage 3a & her cancer center did the bio-marker testing. When she got her second opinion she was restaged at 3B. I was initially staged at 3 & the hospital immediately tested for EGFR. My biopsy was sent to Foundation One before the PET scan. From what I’ve learned from my other “mutant”’friends the bio-marker testing for stage 3 & above. Michelle Link to comment Share on other sites More sharing options...
Barb1260 Posted December 31, 2018 Author Share Posted December 31, 2018 Now I’m worrying about what to do. I almost feel like damned if you do and damned if you don’t. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 31, 2018 Share Posted December 31, 2018 No need to worry. You’ve got a plan in place. When you see the doc, You might need to be assertive in challenging the assumption that bio marker is only done at Stage IV. Link to comment Share on other sites More sharing options...
Barb1260 Posted December 31, 2018 Author Share Posted December 31, 2018 On top of it all, new insurance company kicks in tomorrow so I’m trying to navigate through that. Link to comment Share on other sites More sharing options...
LexieCat Posted December 31, 2018 Share Posted December 31, 2018 Here's Lungevity's guide to biomarker testing--might be helpful to read so you know what questions to ask: https://www.lungevity.org/sites/default/files/file-uploads/biomarker-testing-brochure-110617.pdf Link to comment Share on other sites More sharing options...
Barb1260 Posted December 31, 2018 Author Share Posted December 31, 2018 Thank you ma’am. You read my mind as I saw this when I was not doing my work today and made a note to look it up when I got home. You saved me a few minutes. 😀 Link to comment Share on other sites More sharing options...
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