TJM Posted December 4, 2020 Share Posted December 4, 2020 Talked with my oncologist this after noon. Rather strange conversation because he started by asking me how he could help. I said I was hoping to get an idea on what the plan of attack was and he said we needed to wait for the results of the tumor analysis. Long story short, it looks like both radiation and surgery are not options, he wasn't confident we would have much success finding any targeted therapy which basically means hail mary time with Chemo. We talked about getting a second opinion (Tom G was kind enough to give me a referral) but he said he could pretty much find any options available and Kaiser wouldn't cover the cost of an outside second opinion. He is going to be on vacation next week and Hope's to have the test results by the time he gets back. Interesting part however, is I got a call back from the oncology nurse a few minutes later saying he wanted me to meet with another Oncologist from Kaiser next week who had more experience with Large Cell. That made me feel better because it's another brain to poke. Based on how all this goes I will decide if I will go for the second opinion in Seattle later. To sum up, he was not very encouraging about effective treatment options. I have met the other oncologist once before and he was much easier to talk with so am looking forward to seeing him next Tuesday. I'm still vital (as in no other health issues and maintaining my weight) and can get around fine, if somewhat breathlessly, so got plenty of fight left. Still...not what I was hoping to hear. Another good example of the importance of being your own advocate. I feel more comfortable that I atleast have his attention. If I hadnt pushed I would be sitting around stewing and in the dark for two more weeks. Best to all Tom Link to comment Share on other sites More sharing options...
Sabacat Posted December 4, 2020 Share Posted December 4, 2020 Definitely not what you wanted to hear, but maybe will turn out for the best with second opinion. If there’s someone within Kaiser with more experience in your specific cancer, that could be a huge help. What test results is he waiting for? Link to comment Share on other sites More sharing options...
TJM Posted December 4, 2020 Author Share Posted December 4, 2020 Test on the original tumor to see if any immunotherapy or targeted treatments are an option. Link to comment Share on other sites More sharing options...
GaryG Posted December 4, 2020 Share Posted December 4, 2020 Sorry to hear the news Tom. Let's hope the next oncologist will be more helpful. Meanwhile like you said you need to keep pushing and maybe seek another opinion from outside that circle. I wish you the best. Link to comment Share on other sites More sharing options...
Rower Michelle Posted December 4, 2020 Share Posted December 4, 2020 Oh Tom, I can hear the fight in your words. I’m very sorry your oncologist didn’t have better news to share. A second opinion is worth a shot and since your oncologist seems to be a fan of Aaron Rodgers, have you also considered contacting the Go2Foundation Lung Match program to be matched with a clinical trial? Don’t let the bureaucratic answer of Kaiser won’t pay for treatment stand. That’s what the Department of Insurance is there for. They can be your advocate. Just because it’s a long shot doesn’t mean you can’t score: Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted December 4, 2020 Share Posted December 4, 2020 I'm sorry Tom. If you would like to be matched with someone who has been through clinical trials, we can pair you with a clinical trial ambassador: https://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring/clinical-trial-ambassadors Also, if you would like to see if there are any clinical trials you qualify for, here is the LUNGevity Clinical Trial Finder: https://lungevity.org/for-patients-caregivers/lung-cancer-101/find-clinical-trial Link to comment Share on other sites More sharing options...
TJM Posted December 4, 2020 Author Share Posted December 4, 2020 Rower Your killing me. I am a diehard Lions fan...I've seen enough Rodgers miracles against Detroit all ready. 😶 Thanks for the wise advice. First thing on my list is to apply for SSDI since I'm now stage IV. After that I will do more homework about treatment options. Tom Link to comment Share on other sites More sharing options...
LexieCat Posted December 4, 2020 Share Posted December 4, 2020 Hey, Tom, Sorry things have gotten so complicated. Hopefully one of these resources will get you back on track. Hang in there, dude. Link to comment Share on other sites More sharing options...
Tom Galli Posted December 4, 2020 Share Posted December 4, 2020 Tom, Large cell and small cell LC are well, you know (insert the appropriate cuss word). I was indeed fortunate in two respects: I had a vanilla type of LC and a physician oncologist who always set the table for next-in-line-treatment at each consultation. I really think you could benefit from a second set of eyes on your problem. I'd be driving to Seattle. Stay the course. Tom Link to comment Share on other sites More sharing options...
MBinOregon Posted December 4, 2020 Share Posted December 4, 2020 Tom, Urgh, that news sucks very bad... but I couldn't agree with you more on how we need to be our own advocate. Even if I had a caretaker, I still would have been very vocal - it is MY life, not anyone else's after all. I personally hope you are going with a different insurer next year, but in the meanwhile, I'm glad that you're getting a second opinion. In addition, I agree with Tom G - I'd also meet with the doc in Seattle as well. Let us know how the appointments go and feel the support from your forum family 😊 warm thoughts... MB Link to comment Share on other sites More sharing options...
BridgetO Posted December 4, 2020 Share Posted December 4, 2020 Hi Tom, I may have told you this before. If so, sorry for the repeat. As you know, I have Kaiser also. When I had a rare type of non-lung cancer (stage 3), Kaiser wouldn't pay for an outside second opinion. I paid for one myself., from a doctor who had experience with my cancer type. I could afford the opinion, but not out-of-Kaiser treatment. Fortuantely the Kaiser onc agreed to follow the recommendation of the second doctor, in part because my prognosis was "dismal" . And 9 years later I'm still NED. Bridget O Link to comment Share on other sites More sharing options...
TJM Posted December 4, 2020 Author Share Posted December 4, 2020 Thanks Bridget. That would be my exact plan. Pay for the second myself and then if I like the plan from the Seattle guy better have them give me the witches brew at Kaiser. Link to comment Share on other sites More sharing options...
Judy M2 Posted December 5, 2020 Share Posted December 5, 2020 Tom, just wondering if you can use open enrollment to change from Kaiser? Did we have this discussion previously? Anyway, glad you're up for the fight, and everyone has already given you great advice. Best of luck. Link to comment Share on other sites More sharing options...
TJM Posted December 5, 2020 Author Share Posted December 5, 2020 Just finished open enrollment in November and we seriously considered changing companies but after going through all the pros and cons decided to stay at Kaiser. My logic is I just need to have the treatments identified (if they exist). After that it doesn't matter who sticks me for the infusion. I can afford to pay someone out of pocket to get the treatment plan and assume Kaiser will oblige. Tom Link to comment Share on other sites More sharing options...
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