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Shella677

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    Winchester
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    VIRGINIA
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  1. I need to check into this trial… I am Braf positive and have been on targeted therapy for 4 months. I’m just now seeing this post
  2. Happy Sunday everyone! I just finished up week 3 of my targeted therapy and had labs drawn and met with the NP on Friday. Labs were great and she was impressed at the shrinkage of my lymph nodes , so much that she ran and told my oncologist so he came for a feel at my neck while I was checking out. Finally a good news appt! I was asking the NP about the next steps with the scans. She said we will scan at the 3 month mark which is July and it will be a CT scan of my diaphragm up to my neck bc that is where the cancer is. She said that if in the future we have reason to scan other parts we will and that there probably won’t be another PET scan for awhile bc insurance only approves so many and we don’t want to run out. Does this sound right to you? I’m not sure I’m comfortable with only getting CT scans of my cancerous area. With Stage 4 I feel we should be on top of any spreading. She of course said if I wanted a CT scan of other areas as piece of mind that they would not tell me no. I plan to ask my oncologist the same questions when I meet with him in a month at next lab draws.
  3. I work in finance and this was in my email box first thing yesterday morning from a colleague for multiple reasons https://www.businesswire.com/news/home/20210413005428/en/
  4. Will do Tom! and a new story, not sure if that’s a good thing or not lol
  5. Hi Qing, There is quite the saga to my biomarker finding. I had a needle biopsy done and sent away to Caris labs. Came back positive for PDL1. They said they ran out of tissue for the mutations , dr sent them more. In the meantime dr said let’s send away blood as a back up, blood sample sent to Foundation One labs. Caris came back neg for EGFR and alk , inconclusive for ROS1. They magically found 5 more slides of my biopsy and was going to test them specifically for ROS1. Blood work came back today positive for BRAF V600 which is a targetable rare mutation and Is what my dr is going to treat me for. If you were me would you feel confident will all of the above?? My second opinion dr has been included and is in agreeance,
  6. Thank you Judy for the FB info. I have requested to join. And I will most definitely keep you guys informed. This is the most helpful forum I have found yet.
  7. Good luck Ale. I’ve not had any type of chemo yet but I’ve read that drinking plenty of water prior during and after is very helpful as well.
  8. BRAF is a rare mutation for nsclc , mostly found in colon and skin cancer patients. But yes there is a targeted therapy for it! During my search I did see that it is not treatable by the platinum chemos so that of course has me panicking that I don’t have a back up. Anywho , I’m stopping my search and Will save my questions and concerns for my Dr. But again I am very glad to hear there is treatment options but processing any new news is challenging for me and I have to go through the acceptance phase again.
  9. I guess I meant my targeted therapy pills that are being ordered... dabrafenib and trametinib. Dr casually called them chemo pills, my phone call was quick with him this morning. Already received a text from CVS saying folic acid and dexamethasone are ready, he did not mention those. Going down the rabbit hole on the Internet, I should probably wait until my appt with the Dr.
  10. I knew this journey would be a roller coaster but didn’t realize it would start before I even had a dose of treatment. As we’re waiting for my final biopsy results, I had a second opinion that stated we should at least start chemo this week , after the biopsy comes back either add in immunotherapy, or switch to chemo pills depending on the results. In the meantime schedule another biopsy in case these results come back inconclusive as they once did. Biopsy Scheduled for tomorrow, just now my Dr called and said Foundation One biopsy came back with BRAF V600 mutation.... no biopsy for now. Ordering 2 chemo pills. I will have a formal appt with my dr once the pills come in. Mind is rolling and I’m off to research.
  11. What a day that will be!!
  12. You are correct , my Dr mentioned Keytruda if I don’t have any other biomarkers
  13. Generally speaking, how long is chemo treatment? I haven’t gotten that deep with my Dr yet as a definite plan is not in place but it is on my mind.
  14. Hi PCW, I am in the waiting game for treatment plan as well. I do not have EGFR or ALK either, still waiting on one more lab report to come back to finalize everything, but I do have PD-L1 which will bring immunotherapy in along with IV chemo. I have a second opinion appt with a cancer center on Monday regarding clinical trials, I will report back what I learn. I don’t have much advice for you other than our situations seem similar so maybe we can continue to compare notes.
  15. He did not confirm with me the chemo drugs but I overheard him tell the nurse as she was typing notes and it was the triplet as you mentioned. I didn’t bring it up to him at the time because I recognized the names from this forum lol.
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