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Everything posted by Shella677

  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.
  16. Hi Lexie, I do not know my exact level of PDL, my results said greater or equal to 50%. Dr said I have that going for me so treatment would be chemo and keytruda. He did say I would be getting a port. My swollen lymph nodes lead me to this cancer journey, only symptom I have. When I had my PET scan some on my right side lit up as well that I could not feel, now they are noticeable to touch so I guess it’s just a reminder of the cancer and it makes me nervous of further spreading.
  17. Thank you for your wise words Jesse. I had literally just gotten off the phone with my oncologist when I posted the above and I didn’t know where to turn to let my frustrations out. I’m glad this is a safe place! I’m begging for a treatment plan but I know the drs need all the info in front of them. I do have a second opinion scheduled for Monday, I felt I needed to do that for my mental state as well. I hope to become an active and helpful member of this forum, I will be back!
  18. Well no EGFR or ALK for me. ROS didn’t come back completely positive or negative and they ran out of tissue to test again. Blood work is in the works at Foundation one and is due back tomorrow so hopefully it will be clear or we’ll need to decide if we do Another biopsy. I’m so angry and defeated. I just want to get started tackling this nasty cancer and more lymph nodes popping on my neck almost daily doesn’t help my mental state. I thought I had accepted the fact that I may need the typical vein chemo but after hearing that my odds are dwindling down it has hit hard. I know what ever gets the job done is the intimate goal but it’s still an accepting process, as I am probably still in part denial that I’m going through this at all. Sorry to be a Debbie downer, it’s my hubby’s bday so I’m trying not to vent to him today.
  19. We are still waiting on biomarker results but my dr asked if I was interested in a second opinion, because once we start treatment I can’t enter a trial I guess?? I said yes and will be visiting University of VA once all my markers come back. Is a clinical trial the way to go if there is one out there? Everyone in the medical field I have talked to says yes and I don’t know much about it at this point to feel comfortable. I hate that I may be delaying my treatment getting the second opinion , but if it’s worth it.... I’m torn. I’m stage IV nsclc.
  20. As I was typing a reply my oncologist called. He said that all my biomarker results have not came back. The company requested another block of my biopsy which they then sent. He still wants to meet with me and wants me to meet the radiation team in case we go that route at some point. So probably won’t have a treatment plan in place this week but soon he said. Lexi- that’s great you’ve had good results without targets. I read your replies to other threads and I enjoy your insights and knowledge. He said generally only 20% of women non smokers have the target mutations.
  21. Hi again, it’s been a little bit. My mri was clear, pet scan showed nothing more that what we already know. So lung and neck lymph nodes involved. I have a follow up with my dr on Thursday to go over my bio marker results and treatment plan. In the meantime my patient portal showed I had results. It’s my bio marker! Not knowing exactly what I’m looking at but I see MSH, MLH, PD-L,PMS. Some positive some negative. I don’t see mention of the other mutations mentioned on this site. Did I not get tested for those or maybe the results haven’t came in?
  22. Hi! I’m glad to hear your first treatment went well. I don’t have any advice as I’m awaiting a treatment plan myself, but your situation sounds similar to mine. What stage have you been diagnosed at?
  23. In a selfish sort of way it’s nice to hear from people that are in the same boat as me. All my adult life I have been scared to death of something happening to my children, never did I think I would be the one causing them to go through something at such a young age. This is the hardest part for me so far. They are unaware at this time so I may reach out when it’s time to tell them whenever that is for advice. I will fight, and Waiting to see what it is I’m going to be fighting is the hardest part as mentioned. Sorry for the rambles, I will update more once I have more info and I’m sure more questions will arise. Have a nice weekend!
  24. I just had my first oncologist appt today to go over my final biopsy results and ct scan of my neck that was ordered from my ENT. it was found I have cancerous nodes and the cells likely stem from my lung as there is also a 1.6 cm lump on my right lung that can be seen from the neck scan. Next step for me is a PET scan and MRI of my brain. My biopsy is also being sent away for ngs, which I am not familiar about. I asked if he were to estimate stage he said stage 3c or 4. Being a 39 year old mom, wife , daughter, sister, etc it is hitting hard as I know it has for all of you. The grief hits in waves and when it does it is debilitating. I try to remind myself I don't have all the answers yet nor a treatment plan but it seems the news I hear just keeps getting worse and worse. At this point I will take any advice, success stories, or resources. In the meantime I will be browsing this forum. Thanks for having me!
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