Karen_L Posted March 10, 2022 Share Posted March 10, 2022 So, I'm scheduled for gamma knife on March 28 to fry the pea-sized brain met. I'll also start Tagrisso, in part to protect my brain from those teeny cancer cells that randomly seed themselves. Gotta say, while I have a few fleeting concerns about my oncologist, she regularly brings my case for review at the tumor board, always chats with my brilliant oncology radiologist before meeting with me, and when Tagrisso came up and I expressed concern about whether Medicare would cover it, the oncologist said she'd immediately involve the team-of-people-who-work-to-get-pharmacology-companies-to give-people-a-break-on-medications. (Sorry-- there's a name for that team and I have no recollection of what it is.) I'm impressed that they have the team, and even more impressed that involving them is a natural part of the treatment process. My husband asked if they were still treating with curative intent and the oncologist stepped neatly around a direct answer. She gave the correct information, but I wish she'd just said, "No. We're going to manage it." Or, "No. We're now in the Whack-a-Mole stage." I'm grateful they're catching things when they're small. I'm grateful for the care I'm receiving. But I'm so sad to have moved to Stage 4. It's only been a year and I'm tired of lung cancer. Thanks to all the folks who share their NED/stable news here. I like keeping that news in mind. Karen Link to comment Share on other sites More sharing options...
LouT Posted March 11, 2022 Share Posted March 11, 2022 Karen, It sounds like your oncologist is always looking for additional data and options for your treatment and that is a good thing. The fact that LC can now be treated like a chronic condition is a good thing. Many people in our country have chronic conditions that are controlled and they live a long and full life. I pray the same for you. Please keep us updated on how you are doing... Lou Link to comment Share on other sites More sharing options...
hillham Posted March 12, 2022 Share Posted March 12, 2022 Karen, sorry to hear about the brain met. Would this be considered oligometastatic stage? Are you definitely going on a TKI after this or is there any talk of "weeding the garden," so to speak? Link to comment Share on other sites More sharing options...
Karen_L Posted March 14, 2022 Author Share Posted March 14, 2022 Hi, hillham, Here’s what I read on oligometastatic stage. I suppose my brain met could fall into this category, but, honestly, I’m not sure why the definition matters. The only benefit I might see is in the consideration of whether a patient would benefit from ablative surgery. I would much prefer my team responds to me and to my cancer’s presentation rather than to a term. The tumor board at my treatment center has been following my case and gamma knife was agreed to be the best next step. I’m not sure about what you mean by “weeding the garden.” Yes, I am slated to start osimertinib, i.e., Tagrisso, as soon as it arrives at my doorstep. I had done some research on afatinib and talked with the oncology pharmacist and oncologist about the best TKI match to my mutations, and I also looked at the NCCN guidelines. My treatment path as a whole is considered a preferred approach. Afanintib (Gilotrif) is also considered a preferred pathway, but the side effects tend to be more extreme than with Tagrisso, and my oncologist likes the brain barrier crossing of Tagrisso. If there is progression after this next stage of treatment is complete? More gamma knife is always possible. I haven’t had a need, nor interest, in further research right now. Why do you ask? Karen Link to comment Share on other sites More sharing options...
Karen_L Posted March 14, 2022 Author Share Posted March 14, 2022 On 3/11/2022 at 2:41 PM, LouT said: Karen, It sounds like your oncologist is always looking for additional data and options for your treatment and that is a good thing. The fact that LC can now be treated like a chronic condition is a good thing. Many people in our country have chronic conditions that are controlled and they live a long and full life. I pray the same for you. Please keep us updated on how you are doing... Lou Thank you, Lou, for reminding me to see the good, and to imagine the disease as more and more able to be treated as a chronic condition. I don’t always think like this. Karen Link to comment Share on other sites More sharing options...
Judy M2 Posted March 15, 2022 Share Posted March 15, 2022 Hope Tag is good to you, Karen. It is for me. Link to comment Share on other sites More sharing options...
Karen_L Posted March 15, 2022 Author Share Posted March 15, 2022 5 hours ago, Judy M2 said: Hope Tag is good to you, Karen. It is for me. Thanks, Judy. Your story is one I’ve held on to for the past little while. Any trouble with side effects? Link to comment Share on other sites More sharing options...
RJN Posted March 15, 2022 Share Posted March 15, 2022 Hi Karen, Hope things go well for you with the zap and Tagrisso. I was staged at 4 to begin with, so had to cope with that from the go, but have somehow settled into being comfortable with it being a chronic condition that may go away and flare up over the course of my lifetime. The oligometastatic is far from irrelevant. There is now extensive scientific data that having 1-5 metastases (including brain mets) has a very different outlook and need a different treatment plan to those with more extensive spread. My trial is based on this, and is trying to establish if radical radiation plus systemic theory may have a lasting effect on oligometastatic lung cancer. Sending best of thoughts, Rikke Link to comment Share on other sites More sharing options...
Karen_L Posted March 15, 2022 Author Share Posted March 15, 2022 10 hours ago, RJN said: The oligometastatic is far from irrelevant. There is now extensive scientific data that having 1-5 metastases (including brain mets) has a very different outlook and need a different treatment plan to those with more extensive spread. Wow, Rikke, thanks so much for your information. When you raised the question in your response to me, I felt like I couldn't deal with yet another thing to research (and I think my tone reflected that.) But you remind me that my oncology radiologist, who also holds an endowed research chair at my cancer facility, told us their research is showing that after radiation, the cells around the metastasized brain site somehow "learn" not to accept/allow further cancer activity and then share that knowledge with cells in other locations. I wish I could remember more specifically what she said. If you have any peer-reviewed articles to share, I'd welcome them. Karen Link to comment Share on other sites More sharing options...
RJN Posted March 15, 2022 Share Posted March 15, 2022 Hi Karen, It actually wasn’t me who raised it, but thought I’d just flag is as it certainly changed my outlook immensely. I read a bunch before joining the trial I am on. Will try to dig some of it for you (I read all this back in December). I am not sure, but I think what your radiation oncologist is describing is the apscobal effect. It’s a slightly different, but likely complementary hypothesis which seems to be gaining ground as well. I think of value to you (and me) of these new ways of understanding cancer is the fact that staging is becoming a bit obsolete as it isn’t reflective of the latest findings which suggest that genetic markers, type of spread etc is ultimately more predictive. My oncologists seem to really detest the staging system. cheers, Rikke Link to comment Share on other sites More sharing options...
hillham Posted March 16, 2022 Share Posted March 16, 2022 Hi Karen, It was me who raised the term "oligometastatic." I'm so sorry it caused you stress. I totally understand not wanting to research one more thing! I was actually trying to sound positive, but I now realize it was in a very clumsy way. My oncologist told me that the outcome for so-called oligometastatic cancer can be very good, and that it is even still curable. In my case, I'm not on any treatment at the moment. If the cancer returns, which I expect it probably will, "weeding the garden" could mean attempting to zap the new mets with some form of radiation or even surgery, but opting to still not take the targeted drug for my mutation (Ros-1). For a short time I tried the drug, which is called entrectinib, but I could not tolerate it at all. I'll take it only when there isn't another choice for me. Your doctors sound fantastic. Good luck with the gamma knife and Tagrisso. Both have been absolute miracles for so many people. They will be for you too. Sincerely, Another Karen p.s. "The apscobal effect" sounds fascinating, and maybe explains why the targeted radiation to the brain is so often successful Link to comment Share on other sites More sharing options...
Karen_L Posted March 16, 2022 Author Share Posted March 16, 2022 Here's an interesting piece from the (US) National Institutes of Health: National Cancer Institute. Titled, A More Treatable Kind of Metastatic Cancer?, it discusses oligometastatic cancer and even mentions the apscobal effect! So much to learn.... https://www.cancer.gov/news-events/cancer-currents-blog/2020/oligometastatic-cancer-directly-treating-cancer-metastases Link to comment Share on other sites More sharing options...
RJN Posted March 16, 2022 Share Posted March 16, 2022 This is a great article and covers most of what I read as well. My trial (SARON) is an attempt to provide the clinical evidence highlighted as missing with respect to NSCLC. Interestingly, another member EmanM here has actually already had the same protocol as me outside of the trial, which I think indicates that oncologists really see value in systemic + radical radiotherapy for oligometastatic NSCLC (radiotherapy is not part of standard of care here in the UK for stage 4). Link to comment Share on other sites More sharing options...
Judy M2 Posted March 17, 2022 Share Posted March 17, 2022 @Karen_L, my Tag side effects are the usual nail splitting, Brillo-like hair and itchy rash, as well as nasal allergies. The rash comes and goes. Everything is manageable. I did get mouth sores one time after a stressful week and acidic foods. But remember, everyone is different. Good luck! Link to comment Share on other sites More sharing options...
Karen_L Posted March 17, 2022 Author Share Posted March 17, 2022 @Judy M2Thanks. I appreciate hearing your experience. Link to comment Share on other sites More sharing options...
Justin1970 Posted March 17, 2022 Share Posted March 17, 2022 Hi Karen goodluck with everything I hope the gamma knife radiosurgery is a success, I know waiting is terrible I get mine done next Thursday and worried sick about it, I also know how you feel about being staged at 4 now mine only took 6 months and it does affect the way I feel, goodluck with everything Take care Justin x Link to comment Share on other sites More sharing options...
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