Sue BB Posted January 3 Share Posted January 3 I just had an MRI after experiencing two weeks of increasing vertigo. It shows five tumors in my brain as my lung cancer has metastasized. One is nearly an inch long. How do I deal with that and who do I seek for advice. I will be seeing my oncologist at 8 a.m. tomorrow morning for next steps. I was feeling so good and so hopeful until my last infusion on the 19th of December. Livin Life and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 4 Share Posted January 4 Hi Sue, I don't know exactly what treatment you've been getting, but a hard reality of our disease is the high recurrence rate. I have a team that consisted of a pulmonologist (first found my cancer), surgeon (who performed my lobectomy), and an oncologist (who I look to for overall direction and treatment). Your oncologist can work with you to decide if any additional testing is needed and then the best treatment to pursue. He may present your case for a peer review or speak with others for additional input, but those are good things to have happen. I've seen/read from a number of folks on this forum who have had brain mets treated with radiation (e.g., gamma knife) with excellent outcome. In preparation for your meeting write down any question you may have about any aspect of the upcoming treatment, and bring along someone who can take some notes for you. I remember going to appointments where I was so upset that I Hardly remembered what the doctor had told me once I left. My prayer is for you to find another treatment that is effective. Please update us once you learn more about what will come next. Lou Tom Galli, Pstar and Livin Life 3 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 7 Share Posted January 7 Sue, This is hard news. I'm so sorry you are dealing with it. Lung cancer does seem to like the brain. About a year after my initial diagnosis, a lesion was found on my brain. Because my fist line of treatment included radiation, I had a radiation oncologist on my team already, and the tumor board at my cancer center recommended gamma knife (similar to cyber knife) treatment. Despite the name, no knives are involved! It's a very precise, targeted form of radiation to the specific tumor sites. There are usually not big side effects-- I had none. (My brother-in-law did a 30 mile bike ride the day after his...which is more than I would attempt.) I was also started on Tagrisso, a therapy that targets EGFR-mutated cancer that's gone to the brain. It's a scary time but take it one step, one breath at a time. Please keep us posted. K Livin Life and LouT 2 Quote Link to comment Share on other sites More sharing options...
Sue BB Posted January 8 Author Share Posted January 8 Thank you. I decided to go to Mayo, and wow things have been happening fast, we are leaving today for the first five appointments. I do have radiation schedule here next week, but I will forgo that as I am meeting with a neurosurgeon, oncologist and radiologist plus one more doctor I cannot recall at the moment. I’m terrified at the prospect - my balance is so bad I fell into a wall and stubbed my toe. My husband thought something happened to me the next day as I left a trail of blood from the bathroom to the bed. Kinda funny. The black and blue mark by my left breast not so funny. I could have nailed my port and then ugh. We are going to do some genetic tests, and I heard that the peeps in Mayo may have some new technologies for me. I hope so. I have a pit in my stomach and my children are really worried. Thanks for keeping in touch. I need the connection. LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted January 8 Share Posted January 8 Sue, I'm glad that you're getting the help and support you need. I look forward to hearing that treatments are applied and the situation improves. Know that you are in our prayers. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted January 10 Share Posted January 10 Sue, Treatment at Mayo is a good call. Brain mets are complicated and an experienced treatment team is warranted. I am praying for a good outcome. Stay the course. Tom LouT 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted January 17 Share Posted January 17 Sending prayers and courage.... LouT 1 Quote Link to comment Share on other sites More sharing options...
Sue BB Posted June 25 Author Share Posted June 25 My apologies to all you wonderful people. It has taken me some time to find this forum again after struggling with feeling crappy for nearly 6 months. My trip to Mayo was indeed a whirlwind after the discovery of five tumors in my brain, thanks to my lung cancer spreading. In one day I was diagnosed - had a genetic test and discovered the Kras gene was mutated and then I had gamma knife surgery on my tumors. I just got back from Mayo a couple of weeks ago and the tumors are disappearing…. One was nearly an inch or so long. I’m currently taking a targeted drug which had left me helpless with nausea and fatigue. They lowered the dose and I’m tolerating it better. I cannot do what I used to so I am modifying my life every so slowly. Old habits die hard. I was posting my blog on this site, but here’s my journey all at once. I hope I never have to have gamma knife again…. It was quite the experience. Livin Life, LouT and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
edivebuddy Posted June 25 Share Posted June 25 Glad you went to Mayo and glad you got gamma knife. I had tGK after my resection in 2020. Great thing about gamma knife is hopefully you never need it but if you do it can usually be done. Tom Galli and LouT 2 Quote Link to comment Share on other sites More sharing options...
Sue BB Posted June 25 Author Share Posted June 25 My apologies to all you wonderful people. It has taken me some time to find this forum again after struggling with feeling crappy for nearly 6 months. My trip to Mayo was indeed a whirlwind after the discovery of five tumors in my brain, thanks to my lung cancer spreading. In one day I was diagnosed - had a genetic test and discovered the Kras gene was mutated and then I had gamma knife surgery on my tumors. I just got back from Mayo a couple of weeks ago and the tumors are disappearing…. One was nearly an inch or so long. I’m currently taking a targeted drug which had left me helpless with nausea and fatigue. They lowered the dose and I’m tolerating it better. I cannot do what I used to so I am modifying my life every so slowly. Old habits die hard. I was posting my blog on this site, but the whole story is at https://indychildren.blog/blog/ LouT and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted June 26 Share Posted June 26 Sue, I'm glad to hear that your treatments appear to be working although I'm sorry to hear about the side effects. I just read your blog title "Winter is Coming" and found it quite good. Much insight, and heart seem to have gone into that article. Yes, this post-diagnosis life surely does change if we're open to it. I saw much of myself and my own changes in your words. It would be great if you were willing to post it here on our Lungevity site in our "Blog" section. I believe that many would benefit from it. Also, thanks for the update and keep them coming. I'm interested to hear of your progress. Lou Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Livin Life Posted June 26 Share Posted June 26 Glad you're getting effective care. One of my sisters had gamma for metastatic lung cancer too and it was amazing how helpful it was and how quickly she recovered. Her tumor was so large she had to have surgery to remove it first. She did very well with both - was at an outdoor 4th of July pool party just a few days after... Wishing you ongoing healing and improvement. Thanks for sharing your story! LouT 1 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted June 29 Share Posted June 29 @Sue BB I don’t know many folks with the KRAS mutation. I know there’s a Facebook group for it, but that’s about all I know. Brain mets are scary; it sounds like Mayo was aggressive in addressing them. I’ve only had one and gamma knife was a miracle. I, too, started a targeted therapy afterwards and it’s kept me stable for more than a year. I’m very grateful, and so glad you are doing better. I hope you are better able to tolerate the treatment as time passes. LouT and Livin Life 2 Quote Link to comment Share on other sites More sharing options...
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