RonH Posted August 9, 2020 Share Posted August 9, 2020 Diagnosed NSCLC 3a in May of 2018 with initial treatment being Concurrent Chemo/Radiation which was then followed by Immunotherapy. After 18 Durvalumab Infusions my CTs indicated probable recurrent cancer in main tumor and possible additional lymph node involvement/progression. Due to indicated likely progression, the Immunotherapy infusions were stopped. From subsequent NGS Testing (Tempus) of a biopsy tissue sample I discovered that I was PDL-1 Negative and EML4-ALK Positive. In October I started Targeted Therapy with Alectinib. Having had several CT's Biopsies, and PET Scans since, each indicating less indication of progression, the findings of my latest CT last week now read: No convincing signs of recurrent or metastatic disease in the chest. Postradiation fibrosis of the right upper lobe as described previously noted surrounding groundglass changes and nodularity of the right upper lobe has resolved and was probably related to postradiation pneumonitis. Mild scarring noted in the lingula, otherwise the lungs are well aerated. No new mass, consolidation, pleural effusion or new worrisome nodularity. I couldn't ask for a much better 64th birthday present! Link to comment Share on other sites More sharing options...
LexieCat Posted August 9, 2020 Share Posted August 9, 2020 WOW--heck, yeah, happy birthday!! I got less pleasant news for my 64th, but hopefully the 65th will be better. Link to comment Share on other sites More sharing options...
RonH Posted August 9, 2020 Author Share Posted August 9, 2020 Thank you. Sorry to hear LexieCat of your receipt of less pleasant news, but keep the spirits up and keep on fighting. I firmly believe that me being so stubborn has helped. You'll be in my thoughts and prayers for you receiving great news by your 65th! Link to comment Share on other sites More sharing options...
GaryG Posted August 9, 2020 Share Posted August 9, 2020 Great news indeed. No new mass, consolidation, pleural effusion or new worrisome nodularityn are always welcome. Happy 64th. You say that "from subsequent NGS Testing (Tempus) of a biopsy tissue sample I discovered that I was PDL-1 Negative and EML4-ALK Positive". Was the testing done prior to the first Concurrent Chemo/Radiation or after.? Link to comment Share on other sites More sharing options...
RonH Posted August 9, 2020 Author Share Posted August 9, 2020 Thanks Gary. My Med Oncologist would not approve the biopsy tissue sampling procedure needed for NGS Testing until AFTER the Concurrent Chemo/Radiation AND possible recurrence/progression. He stated that no matter what the NGS found, the first line treatment for 3A was going to be Chemo/Radiation as an "Curable Intent". The protocol he follows is for NSCLC Stage 3A is the Chemo/Radiation with follow-up CT testing, then if possible progression or reoccurrence then Immunotherapy BEFORE genetic testing. Based on my experience and discussions with him, he may alter that in the future to allow the genetic testing earlier before starting Immunotherapy. Turns out that I happened to be his first ALK+ patient. For Stage 4, I believe he allows testing right away. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 9, 2020 Share Posted August 9, 2020 Hooray Ron! That’s great news! Yay! Link to comment Share on other sites More sharing options...
Tom Galli Posted August 9, 2020 Share Posted August 9, 2020 Ron, I read the grand news on the Durva club string but heck, grand news is worth more celebration. You've been in dark places during treatment. Now enjoy he bright lights of life and... Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 10, 2020 Share Posted August 10, 2020 Hi Ron, Also meant to ask- did you attend the ALK Summit? Thoughts? Other than an overly ambitious agenda, I got a lot of out it just prior to my scans. My onc & I had a long discussion about ALK Variants, which evidently is a fairly new concept. My Foundation One testing didn’t have it available back in 2018 so we’re going to try & retest the biopsy. We also agreed if there are future changes to my treatment plan, Camidge would be on the top of the consult list. It was so reassuring to hear my doctor’s confidence in the ALK experts we heard from. Real rock stars. Michelle Link to comment Share on other sites More sharing options...
LouT Posted August 10, 2020 Share Posted August 10, 2020 Ron, That's the kind of news that makes us all smile. Glad to hear that treatment worked for you. Happy 64th birthday and my wish for many more to come. Lou Link to comment Share on other sites More sharing options...
RonH Posted August 10, 2020 Author Share Posted August 10, 2020 6 hours ago, Rower Michelle said: Hi Ron, Also meant to ask- did you attend the ALK Summit? Thoughts? Other than an overly ambitious agenda, I got a lot of out it just prior to my scans. My onc & I had a long discussion about ALK Variants, which evidently is a fairly new concept. My Foundation One testing didn’t have it available back in 2018 so we’re going to try & retest the biopsy. We also agreed if there are future changes to my treatment plan, Camidge would be on the top of the consult list. It was so reassuring to hear my doctor’s confidence in the ALK experts we heard from. Real rock stars. Michelle Michelle, No, I unfortunately didn't make it to the online Virtual Summit. I had planned a two week vacation around the summit in Denver, but the COVID Pandemic threw a wrench into things which I am sure that it did for almost everyone else as well. I however still found myself on a short in-state long weekend getaway as I needed to get out and to just stop living like a hermit for a few days. LOL. (Masks and Social Distancing of course, but it was sure nice to be out and about with other human beings, even from a distance). I've heard nothing but great reviews of the ALK+ Summit (with the exception of the "overly ambitious agenda" as you put it). I've read snippets here and there and definitely plan to register so I can listen to the recorded summit. I was supposed to have a more in-depth Variant test by Caris from tissue samples of my last biopsy, however the bronchial biopsy procedure failed to find any cancerous tissue where the previous CT & PET scans indicated. I guess that was good news in a way. I am going try to get my General Medical Oncologist more engaged in these tests and with the ALK+ experts, but kind of feel once his office determines that you need a TKI (pills not infusions), that they "suggest" second opinions with with the more specialized Lung Cancer Oncologists at The James Cancer Facility / Wexner Medical Center at OSU. No objection on my part as everyone can't be an expert on everything. Ron Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 10, 2020 Share Posted August 10, 2020 I think you made the right call! If you can download the sessions, that’s just as good in my opinion. Unfortunately Jessica Lin & Christine Lovely were cut short due to time constraints. You can totally skip the Ted Johnson Loratinib session, it was a zone out due to the technical difficulty. Dr Camidge opened up with “this is where we were/are” and Shaw did the where we are going. There’s nice synergies between the two. If you prioritize those two it’s a good use of your time. The rest of the presentations are early research/petri dish stuff that’s a few years away from the clinical practice setting. In my opinion there wasn’t much new from last year. I’m hoping next year we can do face to face and maybe there will be more meaningful research updates when COVID gets behind us. Glad to hear you were able to get away for a break! Very smart move! Link to comment Share on other sites More sharing options...
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