DaniellePardue

Opdivo is currently approved, even in people with certain mutations...has there been discussion of which mutations are keeping you from being on Opdivo? Meanwhile: keep an eye out for NCI_Match trials, and JAVELIN trials. Both are endeavors to open up hundreds of new immunotherapy trials in the next few months. Another idea: on clinicaltrials.gov, search "avelumab." That's the immunotherapy drug that my mom is taking as part of a trial. LUNGevity also has a clinical trial matcher tool, on this site. Keep us posted! <3

Hi! What's the update? From my understanding, this is actually pretty controversial. My mom was dx at stage 4, but now she has had a very good response, and the question is similar: surgery, or no? Anyway. For my mom's case, we opted to get on the immunotherapy clinical trial, since time was of the essence, and then arrange for a second opinion (Duke). Second opinion said there was no better treatment than the immunotherapy drug. That's not to say that may be true in every case, but my mom has done so well that I would not hesitate to at least investigate the immunotherapy option in a second opinion setting. Even if, at this point, you have already begun one treatment option, it is never too late to pursue a second opinion. There are plenty of people in this community who go months or years and then have a consult with a new oncologist, just for verification and peace of mind. Keep us posted; I see it's been a while since you posted. <3

I'm so sorry for this news. What is the latest? Was there any discussion of targeted therapy or immunotherapy? Sending all best wishes. <3

Keep us posted. My mom has had phenomenal results on a sister drug to Keytruda. She is on a clinical trial for Avelumab. One thing I will suggest right at the outset: make sure your Onc is monitoring your adrenal and thyroid functions. The two are interrelated. Technically, the drug can "rarely" cause impairment of the adrenal or thyroid glands. While this was classified as rare during earlier clinical trials, I am seeing and hearing it more and more often in stories from patients. Adrenal insufficiency and hyperthyroidism and hypothyroidism are all treatable and correctible with medication, not really a big deal, but it must be monitored so it can be caught. My mom's adrenal impairment went unnoticed until her energy level and appetite dropped dangerously low. Now, it has all been corrected by steroids. Again: rare, not a big deal, but could become a big deal if not caught. Let us know how Keytruda works for you! Sending all best wishes! <3