JoWell Posted November 22, 2020 Share Posted November 22, 2020 My mom had her first pet scan on the 17th, two month after starting on Tagrisso. We emailed her onc on the 20th to find out the results. Her onc said that she needed to take the results to the lung cancer board first before sharing with us. My guess is that the results must be bad. My mom is with Kaiser. Are there fellow Kaiser patients here? Did you have similar experience? Link to comment Share on other sites More sharing options...
LexieCat Posted November 22, 2020 Share Posted November 22, 2020 Hi, Jo, I know there are other Kaiser patients here, and I'm sure they will weigh in. I wouldn't conclude that the results must be "bad"--it may be their standard protocol (tumor boards debate test results and treatment protocols to decide what's likely to be most effective, pooling their various areas of expertise and perspectives), and/or the response might not be as complete as they hoped and the treatment may need to be tweaked. Lots of people here start off on one treatment path that is disappointing, but then respond well to an alternative. Yes, the anxiety is real--I hope you get the results soon and that they are overall good. Link to comment Share on other sites More sharing options...
LouT Posted November 22, 2020 Share Posted November 22, 2020 JoWell, Yes Scanziety is real, for sure. But, I agree with Lexie that the doctor may be covering all the bases (in a good way) before sharing results with you. But, please try not to "catastrophize" the situation. I had a PHD is doing that and it caused me days of self-torment that wasn't really necessary. Good luck with the results and we look forward to hearing them. Lou Link to comment Share on other sites More sharing options...
TJM Posted November 22, 2020 Share Posted November 22, 2020 I am being treated by Kaiser and yes they are less than diligent about sharing scan results. But I have put my foot down and they now share more quickly. It's a fact that those scans are my property and I pointed that out to them clearly. I am guessing that many patients dont do that so they can get away with it more often than not. Good luck Tom Link to comment Share on other sites More sharing options...
BridgetO Posted November 22, 2020 Share Posted November 22, 2020 I have Kaiser in Portland and I'm not sure whether policies in California are the same. I don't have any problems getting scan results. If they don't send them right away I ask for them. I know they use the tumor board a lot. With my lung cancer, my surgeon went to the board to see if anyone thought my tumor could be biopsied by needle or bronchoscope -- it was in a difficult location. For another advanced non-lung cancer, I got the tumor board report about the recommendations for my chemo. There was one dissenter, who thought that I should get additional and some different chemo than my med onc recommended. Based on that, I got a second opinion and had the additional chemo. So tumor boards can be helpful. I don't know that delaying giving you info is necessary, though. Bridget O Link to comment Share on other sites More sharing options...
JoWell Posted November 23, 2020 Author Share Posted November 23, 2020 Thank you LexieCat, Lou, Tom, and Bridget. I appreciate your comforting/reassuring words and sharing your KP experiences. I've been trying to stay calm by doing busy tasks (e.g. mopping floors, doing laundry, buying groceries). Now I'm exhausted but still with a racing heart I'll find out the results Tue or Wed, I'll let you guys know what they are. My mom has been quite chill about this. Nothing fazes her anymore. I'm the one running around like a headless chicken. I want to embrace life to enjoy every minute with her at the same time I'm not living life to the full as "could've should've would've" has filled up my head. I wanted to say thank you. I hang around this forum every night and have read many of your posts. Many have benefited from your experience, I feel lucky that I'm one of them. Link to comment Share on other sites More sharing options...
JoWell Posted November 25, 2020 Author Share Posted November 25, 2020 Hi all: Our onc called just now. My mom's lung cancer is showing under control (low activity, no more effusion) but four lymph nodes on her neck are very active (Pet Scan reads activity level 8). The next step is ultrasound-guided biopsy. They want to find if out if it's separate cancer or part of lung cancer that isn't responding to Tagrisso. So guys, what do you think? Please speculate. The more I know the better prepared I am. If I don't hear from you today I wish you a Happy Thanksgiving! Link to comment Share on other sites More sharing options...
LexieCat Posted November 25, 2020 Share Posted November 25, 2020 I don't think any of us can speculate. I had a lobectomy three years ago to remove a Stage Ib lung cancer, then three years later was diagnosed with Stage IV lung cancer in my other lung. None of the docs can determine whether it's a separate cancer or a recurrence/spread from the first one. Be sure to ask them to send the tissue samples out for molecular testing--it could be there's a different targeted therapy that will treat it. Link to comment Share on other sites More sharing options...
GaryG Posted November 25, 2020 Share Posted November 25, 2020 Basically nobody knows for sure till the biopsy result is known. As Lexie said make sure they take enough tissue to run all the tests including molecular testing. Good luck! Link to comment Share on other sites More sharing options...
JoWell Posted November 25, 2020 Author Share Posted November 25, 2020 I heard about Next Generation Sequencing (NGS). Is that similar to biomarker testing? When is the time that's appropriate to ask for NGS? Link to comment Share on other sites More sharing options...
LexieCat Posted November 26, 2020 Share Posted November 26, 2020 Yes, it's a form of biomarker testing--more thorough than the traditional technologies. I'd ask for it to be done now. My understanding is that it's appropriate any time there's progression. I believe it's more thorough and comprehensive than traditional genomic sequencing to look for specific biomarkers. Link to comment Share on other sites More sharing options...
LouT Posted November 26, 2020 Share Posted November 26, 2020 JoWell, I wish your Mom all good luck on her biopsies. Let keep fingers crossed until you have definitive data. And Happy Thanksgiving. Lou Link to comment Share on other sites More sharing options...
JoWell Posted November 26, 2020 Author Share Posted November 26, 2020 Happy Thanksgiving! Just had a feast at my parents'. We took it easy this year, most dishes were bought from grocery stores required only heating. Glad we did it this way because we had more time to each other. My mom ate little, she had no appetite for nearly a year. My dad is 9th year into his Parkinson's disease, today he was not lucid but he hugged me tight and kissed me, that's all I wanted. I had to leave their house early because I wanted to do a big good cry. 2020 is going above and beyond for us. First my dad had a hip replacement surgery in Feb, his dementia and energy went freefall from there. Then August came my mom's NSCLC dx. Now I know some of her cancer is not responding to Tagrisso. The small hope and dream I've had is diminishing. I feel sad, frustrated, and lonely. In the past I had replied on my dad for medical advice. Now he can barely speak a coherent sentence. I'm sad, sad, and sad. Sorry for venting. I'm going to do some crying and taking a nap. When I wake up I'll do more planning to fight cancer with my mom Love you all. Link to comment Share on other sites More sharing options...
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