Yet again Posted January 29, 2023 Share Posted January 29, 2023 Hello. I am by some miracle a long term survivor of 2 separate primary cancers.I was diagnosed with NSCLC as well as primary glioneuronal brain cancer .I have had 1 brain surgery for the primary brain cancer and 2 additional brain surgeries for metastatic NSCLC.I have had a lobectomy to my right upper lobe . I have had 45 radiation treatments for lung and 15 to brain .I have been on opdivo every 2 weeks continuously since 2015.I have also received cisplatin and alimta when first diagnosed in 2013. In the last 18 months I have had progression in the right lung and now left lung.This was treated with radiation. I feel the Opdivo is. No longer working.My oncologist has kept me on it every two weeks still Do I have an y other options ? I thank you so much for listening .Any direction provided is greatly appreciated Justin1970, Izzy and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 29, 2023 Share Posted January 29, 2023 Well, @Yet again, you are indeed a miracle-- you'll fit right in with all the other walking miracles here. It's hard to comment on your treatment because current treatments are aligned with patterns of genetic mutations. Have you had biomarker testing? Are the results of testing the reason you've been on Opdivo? You didn't mention whether your oncologist is a lung cancer specialist, or whether you are being treated at a research or community hospital. I'm thinking your complex medical history makes this a perfect time to head to the nearest big cancer center to have a long talk with a specialist in your mutation(s). Here's a helpful place to start: https://www.cancer.gov/research/infrastructure/cancer-centers/find Welcome here. I hope to hear more from you. Justin1970 and Yet again 2 Quote Link to comment Share on other sites More sharing options...
Justin1970 Posted January 29, 2023 Share Posted January 29, 2023 Hi yet again Welcome here so sorry to read that your going through this again after what you have already been through, I hope you get some good news and answers Karen always has great advice, I've had gamma knife radiosurgery to 2 brain mets that didn't work recently I had brain surgery to remove the tumor but that didn't work either now I'm having whole brain radiotherapy but I'm not convinced that will work either seems like the more I try the more bad news I get, I don't know how many times you can have this done, Im sorry I can't help you but im sur someone will come on here with an answer all the best Take care Justin 7 hours ago, Yet again said: Yet again, Izzy, Tom Galli and 1 other 3 1 Quote Link to comment Share on other sites More sharing options...
Yet again Posted January 29, 2023 Author Share Posted January 29, 2023 9 hours ago, Karen_L said: Well, @Yet again, you are indeed a miracle-- you'll fit right in with all the other walking miracles here. It's hard to comment on your treatment because current treatments are aligned with patterns of genetic mutations. Have you had biomarker testing? Are the results of testing the reason you've been on Opdivo? You didn't mention whether your oncologist is a lung cancer specialist, or whether you are being treated at a research or community hospital. I'm thinking your complex medical history makes this a perfect time to head to the nearest big cancer center to have a long talk with a specialist in your mutation(s). Here's a helpful place to start: https://www.cancer.gov/research/infrastructure/cancer-centers/find Welcome here. I hope to hear more from you. Hello Karen Thank you so much for the information I am being treated at Moffitt Cancer center in Tampa Fl My oncologist is a lung cancer oncologist.I have had mecukar testing done in the past and they showed zero mutations I had to leave Moffitt for a couple of years because they would not prescribe Opdivo After getting consultations at Duke ,Md Anderson and Mayo clinic I ended up at Fl Cancer Specialists who were willing to give me Opdivo I remained with .offitt for Neuro.After 3 years at Fl Cancer Specialists I requested a new thoracic oncologist at Moffitt.Six months later gave me a different thoracic oncologist.I asked for Opdivo and he complied My latest progression in my lung was Oct .2022.Iasked Moffitt to order molecular testing My oncologist said it's not covered by insurance I then called Foundation One and arranged the tests I show a Brafv6000 mutation I then asked my .offitt thoracic oncologist if we could explore other drugs and he said no we will stick with Opdivo Im very stressed out with the progression Thank you again Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Yet again Posted January 29, 2023 Author Share Posted January 29, 2023 5 hours ago, Justin1970 said: Hi yet again Welcome here so sorry to read that your going through this again after what you have already been through, I hope you get some good news and answers Karen always has great advice, I've had gamma knife radiosurgery to 2 brain mets that didn't work recently I had brain surgery to remove the tumor but that didn't work either now I'm having whole brain radiotherapy but I'm not convinced that will work either seems like the more I try the more bad news I get, I don't know how many times you can have this done, Im sorry I can't help you but im sur someone will come on here with an answer all the best Take care Justin Hello Justin,I am sorry to hear of all that you have been through .I pray things turn around soon for all of us I am wishing you much peace and love Thank you for the welcome Justin1970 and Izzy 2 Quote Link to comment Share on other sites More sharing options...
Yet again Posted January 29, 2023 Author Share Posted January 29, 2023 7 minutes ago, Yet again said: Hello Karen Thank you so much for the information I am being treated at Moffitt Cancer center in Tampa Fl My oncologist is a lung cancer oncologist.I have had mecukar testing done in the past and they showed zero mutations I had to leave Moffitt for a couple of years because they would not prescribe Opdivo After getting consultations at Duke ,Md Anderson and Mayo clinic I ended up at Fl Cancer Specialists who were willing to give me Opdivo I remained with .offitt for Neuro.After 3 years at Fl Cancer Specialists I requested a new thoracic oncologist at Moffitt.Six months later gave me a different thoracic oncologist.I asked for Opdivo and he complied My latest progression in my lung was Oct .2022.Iasked Moffitt to order molecular testing My oncologist said it's not covered by insurance I then called Foundation One and arranged the tests I show a Brafv6000 mutation I then asked my .offitt thoracic oncologist if we could explore other drugs and he said no we will stick with Opdivo Im very stressed out with the progression Thank you again Hi Karen, I'm sorry I didn't mention I did have a biopsy on the new tumor in Oct 2022. It is adenocarcinoma which is what the original tumor in my right lung was in 2013 Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 29, 2023 Share Posted January 29, 2023 @Yet againWell, dangit, you have a lot to teach us about advocating for ourselves. I'm sorry you've had such a rough go of it. I can only offer some ideas. In some peer-reviewed research I found this: Dabrafenib–Trametinib Combination Approved for Solid Tumors with BRAF Mutations There are a couple of doctors mentioned in the article you might reach out to...? One is "Lyndsay Harris, M.D., who leads NCI’s Cancer Diagnosis Program. She is also a lead investigator with NCI-MATCH, one of the clinical trials that led to the new approval. " The American Lung Association has a page about BRAF with a patient video and a video featuring a physician. Perhaps that physician might be a resource? Also, I found information at Johns Hopkins. Perhaps you'd consider giving their cancer center a call and asking if there's a lung oncologist with familiarity with BRAF V600E you could meet with? I believe the Lung Association has an online group like this. Maybe someone there has dealt with your particular mutation and can give you a lead. Here's a link from the Lung Association's page: "Join our free Lung Cancer Survivors online support community on Inspire." Those are the ideas I can share; they may be garbage, but perhaps they might spark an idea about next steps. I wish you strength and hope and courage. You know how to do this work! Justin1970 and BridgetO 2 Quote Link to comment Share on other sites More sharing options...
Yet again Posted January 29, 2023 Author Share Posted January 29, 2023 3 hours ago, Karen_L said: @Yet againWell, dangit, you have a lot to teach us about advocating for ourselves. I'm sorry you've had such a rough go of it. I can only offer some ideas. In some peer-reviewed research I found this: Dabrafenib–Trametinib Combination Approved for Solid Tumors with BRAF Mutations There are a couple of doctors mentioned in the article you might reach out to...? One is "Lyndsay Harris, M.D., who leads NCI’s Cancer Diagnosis Program. She is also a lead investigator with NCI-MATCH, one of the clinical trials that led to the new approval. " The American Lung Association has a page about BRAF with a patient video and a video featuring a physician. Perhaps that physician might be a resource? Also, I found information at Johns Hopkins. Perhaps you'd consider giving their cancer center a call and asking if there's a lung oncologist with familiarity with BRAF V600E you could meet with? I believe the Lung Association has an online group like this. Maybe someone there has dealt with your particular mutation and can give you a lead. Here's a link from the Lung Association's page: "Join our free Lung Cancer Survivors online support community on Inspire." Those are the ideas I can share; they may be garbage, but perhaps they might spark an idea about next steps. I wish you strength and hope and courage. You know how to do this work! Hi Karen Than you very much fot the Information.I have found that the braf mutation is druggable Moffitt brings up the side effects I told them every treatment so far has had side effects They won't consider any other medications I will try your suggestions.Unfortunateky I can't afford to financially travel to different facilities anymore..Cancer has really drained me in more ways than one Thank you again it is my h appreciated Debbie Justin1970 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 31, 2023 Share Posted January 31, 2023 @Yet again Just a couple of thoughts on the fly. Lungevity has virtual meetups for cancer folks where people might have some information for you. The one I'd urge you look into is Rare Mutation (RET, ROS1, MET, BRAF) – 1st Wednesday 3 pm ET / 2 pm CT / 12 pm PTRegister in advance for this meeting After registering, you will receive a confirmation email containing information about joining the meeting. Also, GO2 has advocacy support people who will offer assistance. I believe they also have info about financial support that could help with travel. Check out the resources and support tab in the menu on their home page. Hang in. Justin1970, Yet again and Tom Galli 2 1 Quote Link to comment Share on other sites More sharing options...
Judy M2 Posted February 3, 2023 Share Posted February 3, 2023 Debbie, in addition to Karen's good advice, the American Cancer Society can provide financial assistance for travel and lodging. You may want to look into that. Take care. Justin1970, Tom Galli and Yet again 2 1 Quote Link to comment Share on other sites More sharing options...
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