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LarryFB56

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Everything posted by LarryFB56

  1. My biopsy just came back positive for the BRAF mutation. In addition to PD-L1 at 100%. Anybody have any experience with regards to the BRAF? My oncologist wants to start me off on Keytruda combined with radiation to the node.
  2. Thank you Susan. I've been floowing your story and we have many similarities I was diagnosed 3B Adeno in July 2016 and underwent the combo of 39 rounds of radiation and 4 rounds of chemo. Subsequently ended up with pneumonia from post rad and esophageal stricture. Last scan in May showed NED but then beginning of July cervical lymph node popped up and a a PET/CT was done and it came back hot. No other hypermetobolic activity in my body. Well biopsy was positive and now just waiting for tissue testing before they recommend a treatment. My radiology oncologist wants another 30 blasts at the node but my heme oncologist wants to wait until the testig comes back and use the node as a barometer wether target therapy of immunoltherapy is working. Wondering for your second line did you consider immune therapy like Opdivo or Keytruda? Regardsless you are NED now. BTW I understand the ordeal with your parents. I lost my dad in January and was lucky to see him for my mothers 80 th birthday. Subsequently learned that my mother has stage 4 breast cancer and to this day she know nothing about what's going on with me. I live in Florida and have no support system and thinking about moving back to Toronto to be with my family. You are an inspiration and prayers of healing and full recovery I'm sending your way. Best Larry
  3. Tom thank you for your informative post. I moved down to Florida 4 years ago from Toronto. Needless to say I have my whole family and support system up north. It has been difficult challenge doing the treatment s. Florida. I will have to make some decisions. I was initially diagnosed Augusts 2016 with Adenocarcinoma Large Cell. The lymph node the came back positive for lung primary was the right upper neck. My radiology oncologist recommends 30 shots of radiation however my heme oncologist wants to complete all the molecular tests first. He says that the lymph node would be a good indicator if I'm responding the chemo/systemic (i guess is the immunotherapy). At this point emotionally I just want to coccoon in my apartment and anxious to get this treatment going. BTW I picked up your book from Amazon and just started. It seems the first diagnosis is a huge surprise and every time I go to sleep I hope I wake up and all this was just a bad dream. Cheers Larry
  4. Thank you Briidget. I wil definitely look at that thread. Larry
  5. I was diagnosed 13 months ago with stage 3B NSCLC - single lesion in right lower lower lobe and mediastinal lymph nodes. After a course of radiation and chemo (4 cisplatin and alimpta) and going tthrough a bout of pneumonia and pneumonitis as well as esophagitis I started to feel human again. A month ago I felt a lump in my neck , had a pet scan and the node was hot but everything else was clear . The older lesions were NED. Biopsy of the node came back positive for NSCLC and now waiting for molecular testing to come back. Went from a Stage 3B to a 4 overnight. Devastated. The waiting is a killer. Would love to hear from other to figure how to manage this.emotionally and medically.
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