KOP Posted November 25, 2021 Share Posted November 25, 2021 Forum to discuss treatments, Clinical Trials, and research for Non Squamous NSCLC with no drivers and no response from PDL-1 focused immunotherapy. Link to comment Share on other sites More sharing options...
PaulaC Posted November 25, 2021 Share Posted November 25, 2021 This is me 3 year survivor. Link to comment Share on other sites More sharing options...
KOP Posted November 26, 2021 Author Share Posted November 26, 2021 Awesome! Can I ask if you are still on a maintenance treatment? Link to comment Share on other sites More sharing options...
PaulaC Posted November 26, 2021 Share Posted November 26, 2021 No maintenance so far. I did Chemo and radiation which shrunk the main tumor and lymph nodes. Originally I was told that the cancer had spread and I wasn’t a candidate for surgery. I ended up having such good results that I was able to have an open lobectomy. The surgeon removed upper left lobe and lymph nodes that had been cancerous. That was Oct 2018. I’ve had regular my CT scans and thanks to god and science I’ve been NED. Link to comment Share on other sites More sharing options...
KOP Posted November 26, 2021 Author Share Posted November 26, 2021 What chemo treatments worked for you? Link to comment Share on other sites More sharing options...
PaulaC Posted November 26, 2021 Share Posted November 26, 2021 Carboplatin · Paclitaxel (Taxol) Cocktail Link to comment Share on other sites More sharing options...
KOP Posted November 30, 2021 Author Share Posted November 30, 2021 Can anybody tell me if one I/O for PDL1 checkpoint didn’t work, does that mean all of them won’t work for a given patient? They keep coming out with new ones. I’m told they all work the same. If that is the case why do we keep seeing more reports on different ones? Link to comment Share on other sites More sharing options...
Good Bro Posted November 30, 2021 Share Posted November 30, 2021 This is my bro also. Stage 4 NSCLC with no targetable mutations and negative PDL-1 response. Dx May 2021. 5 treatments of Carbo/Pem/Pex triplet, targeted radiation to 18 brain tumors on 10/5. Now off the Carbo and just the Alimta & Keytruda infusions every 3 weeks. Next scans tomorrow. Still has a chronic cough and more bad days than good of late with pain, fatigue, and cough. Also has spread to spine. Link to comment Share on other sites More sharing options...
KOP Posted November 30, 2021 Author Share Posted November 30, 2021 Sorry to hear. Just said a prayer for both of you and your families. Did he show any response to any of his treatments? Link to comment Share on other sites More sharing options...
KOP Posted December 6, 2021 Author Share Posted December 6, 2021 Does anybody have any data or reports on CD66B as a bio marker? I have seen an short article on it being an indicator of poor Immunotherapy response in patients with NSCLC. Link to comment Share on other sites More sharing options...
KOP Posted December 21, 2021 Author Share Posted December 21, 2021 My wife just progressed on her 2nd line. We now have to find a clinical trial. Please give all suggestions for NSCLC w/o drivers. We scheduled to do whole brain radiation in January but told they have nothing else to over for the systemic lung cancer. Begging for suggestions on clinical trials for us. Link to comment Share on other sites More sharing options...
Tom Galli Posted December 21, 2021 Share Posted December 21, 2021 KOP, This might be a good start point for locating a clinical trial for your wife. Stay the course. Tom Link to comment Share on other sites More sharing options...
Judy M2 Posted December 21, 2021 Share Posted December 21, 2021 Also contact GO2 Foundation for help finding a clinical trial. Link to comment Share on other sites More sharing options...
Good Bro Posted January 4, 2022 Share Posted January 4, 2022 Sorry to hear about your wife's progression Kevin. So, is the plan to still do the WBRT? I couldn't quite understand. How many lesions does she have on her brain? Just wondering because my brother's docs were able to do the stereotactic targeted radiation on 18 lesions successfully, where we thought for sure they would need to do the whole brain, which has a higher risk for side effects as you likely know. As you know, your wife and my brother are in very similar situations. Although, not sure if his 2nd line treatment will be effective yet or not. They haven't started it yet due to his setback with the collapsed lung and stent placement. He's actually still in the hospital now, more than 3 weeks after his procedure. He just had his first SBRT to his lung tumor, which was block his airway, today. Just heard that there is a chance they might release him to go home after his treatment (2 of 12) tomorrow. That would be great. Hope you are able to find a clinical trial that you wife responds well to. Keep us posted, especially me as there is a good chance my brother might be heading that direction in the next few months. Link to comment Share on other sites More sharing options...
Good Bro Posted January 12, 2022 Share Posted January 12, 2022 Hey there KOP, just wondering how your wife is doing and if you guys ended up finding a suitable clinical trial? Also, can you share what her 1st and 2nd line treatments were that didn't work? Keeping her in my thoughts and prayers! Link to comment Share on other sites More sharing options...
KOP Posted January 13, 2022 Author Share Posted January 13, 2022 The first line was carboplatin and alimpta, then added Keytruda. Also, had radiation to both hips. The first line improved the bone mets and held everything else stable. When she went to just Keytruda and ALimta it came right back. 2nd line was docetaxel and ramuceramab. Improved it a bit but mostly held it stable for 6 rounds then bad scans. We start whole brain radiation Monday for 2 weeks. We are lined up for a clinical trial to start 4 weeks after brain radiation. There were several to choose from assuming the brain mets stays stable for 4 weeks. If you want to talk I can give you my email and we can set up a call. Link to comment Share on other sites More sharing options...
BridgetO Posted January 13, 2022 Share Posted January 13, 2022 Here's a recommendation about making personal contact based on posts on this site. If you choose to do so, we recommend using the Message function, which allows you to communicate privately. This can be found at the top of the page at the right-- the little envelope icon. And of course you know that no-one on here has been screened and that there's always some risk in making personal contact based on social media contact. I can't imagine anybody choosing to impersonate a lung cancer patient or caregiver! But, just sayin'. Another way to get acquainted with forum members is to participate in forum Zoom meetups. Bridget O, Moderator Link to comment Share on other sites More sharing options...
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