JuneK Posted October 19, 2022 Share Posted October 19, 2022 I had my first PET Scan yesterday since beginning my treatments (4 cycles of Carboplatin, Alimta and Opdivo). I received some pretty good results this afternoon. The main tumor shrank from 3.4 x 3 cm down to 1.9 x 1.7 cm. The SUV (activity level) went from 20.6 down to 12.7. The hip spot is harder to measure because of scar tissue, but the SUV there went from 9.3 to 1.9. I can’t tell you how relieved I am that things seem to be going in the right direction. Feeling much more hopeful today! I now have an appointment on the 28th with a thoracic surgeon. I am frankly surprised that they are considering a lobectomy since I am Stage 4. But my oncologist explained that I am what he calls Stage 4 “with an asterisk”. Since it is not in any of the lymph nodes in the middle of my chest, and is only in one other spot, the small hip lesion, they want to be aggressive and think that a lobectomy will give me the best chance. I myself, like this aggressive approach. Could there be any down side to it? He also recommended a radiologist to meet with to plan for doing radiation treatments on the hip. This would be done after the surgery though. I will continue monthly infusions of Opdivo, as long as I can tolerate it (up to two years). Might have to switch at some point though, since I’ve already been having a reaction to it. We’re hoping to keep it manageable as long as possible. All in all, I'm feeling very thankful tonight. I know I still have a long way to go, but at least things seem to be going in the right direction for now. Thanks to everyone for your support and encouragement! And especially for your messages of HOPE! June Justin1970, Tom Galli, RosieSD and 3 others 6 Quote Link to comment Share on other sites More sharing options...
Karen_L Posted October 19, 2022 Share Posted October 19, 2022 WOW. I love your new staging result: "Stage 4 with an asterisk" Congratulations on having a care team that is going all Rambo on the stupid cancer. Can't wait to hear what happens next. LouT, JuneK and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
LouT Posted October 19, 2022 Share Posted October 19, 2022 JuneK, I love the asterisk...and this is hopeful news. I look forward to hearing about a successful surgery in your future updates. In the meantime there is good information on "Thoracic SurgeryTips and Tricks" (read lobectomy) that will help you to prepare for, go through, and recover from the surgery. That can be found here. Let us know if you have any questions on the surgery, there is a lot of experience here that you can count on. Lou Justin1970, JuneK and Tom Galli 3 Quote Link to comment Share on other sites More sharing options...
JuneK Posted October 19, 2022 Author Share Posted October 19, 2022 Thank you both! And thanks LouT for the link to the surgery tips. Time to start educating myself on that! I've noticed when I access this site with my phone, I cannot see this topic, Member Updates. Does anyone know why? Or how I can see it on my phone? Thanks in advance. June LouT and Justin1970 2 Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted October 19, 2022 Share Posted October 19, 2022 June, Your PET results are indeed grand good news! SUV declines are dramatic so your combination chemo is working. Kudos to your physicians for their aggressive approach. The spot on your hip can be zapped with precision radiation and taken off the table. Your sole lung tumor can be resected. You have a real chance of going from Stage IV to NED! Thank goodness you've got physicians that recognize your individual circumstances and have the courage to step away from a standard of care to give you a real shot at NED. Assuming you have your surgery and precision radiation, continued treatment with Opdivo is prudent. Lung cancer is so dangerous because it recurs often after "successful" treatment and Opdivo, systemic therapy, will keep attacking stray cancer cells in your blood stream and lymphatic systems before they settle down and form a nodule or tumor. I can't offer assistance on using our Forum from your phone. My fingers are way too fat and my eyes are too dim to do much more than answer a phone call. Often I screw that up. Stay the course. Tom Justin1970, JuneK and LouT 3 Quote Link to comment Share on other sites More sharing options...
JuneK Posted October 19, 2022 Author Share Posted October 19, 2022 Thank you, Tom! Your vote of confidence in my physicians is very encouraging and means a lot to me. There are so many treatment options out there that I am always wondering if we are doing the right thing. I never had any idea how complicated cancer & cancer treatments were until now! The phone thing is not a big deal. I mostly found it odd that some parts of the forum seem to be missing. Justin1970 and LouT 2 Quote Link to comment Share on other sites More sharing options...
LouT Posted October 19, 2022 Share Posted October 19, 2022 7 hours ago, JuneK said: Thank you both! And thanks LouT for the link to the surgery tips. Time to start educating myself on that! I've noticed when I access this site with my phone, I cannot see this topic, Member Updates. Does anyone know why? Or how I can see it on my phone? Thanks in advance. June June, I accessed this forum on my phone and "Member Updates" was on top and above it was an arrow banner pointing left with "STORIES OF SURVIVORSHIP" above it. Or course when I scroll down to read posts I lose both of them as they scroll off the page. Perhaps that is what is happening to you as well. Lou Justin1970 and Tom Galli 2 Quote Link to comment Share on other sites More sharing options...
RosieSD Posted October 20, 2022 Share Posted October 20, 2022 Hi June, Thank you for your updates, I’m so glad your scans came out with really positive results! It’s good news that even through the painful side effects of Opdivo, your chemo combo treatment works. I’m going in for my 4th treatment of Opdivo tomorrow morning. And even though I know I will be feeling some pain as a side effect, I’m not as fearful ‘cause there are people like you for whom the treatment works, as well as the many survivors and their stories. It encourages me to focus on the big picture, hoping there’s a treatment that’ll work for me too. Wishing you wellness, Rosie Tom Galli, Scruboak, JuneK and 2 others 5 Quote Link to comment Share on other sites More sharing options...
JuneK Posted October 21, 2022 Author Share Posted October 21, 2022 Hi Rosie, good to hear from you. How did your treatment go yesterday? I sincerely hope all went well. It was the strangest thing yesterday with my Opdivo treatment - I never got any pain at all this time! This, after 3 treatments in a row where the pain hit like clockwork. I am truly having the luckiest week ever. The only thing I did differently, was this time I chose one of the heated chairs. I turned the back heat up as far as it would go and got my back really warm. Then when treatment started, I closed my eyes and pretended I was lying on a beach somewhere with the sun warming my back. I really zoned out and almost felt like I was there! I have no idea if this helped at all or if it was just a coincidence, but I plan on doing this again next time, just in case. The way our bodies work is the strangest thing sometimes. Best to all, June LouT, Scruboak, Justin1970 and 1 other 4 Quote Link to comment Share on other sites More sharing options...
Pstar Posted October 22, 2022 Share Posted October 22, 2022 So happy for your good news June. LouT, JuneK and Justin1970 3 Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted October 25, 2022 Share Posted October 25, 2022 June - It's great to see that doctors are finally taking aggressive steps for stage IV patients. I'm stage IV, diagnosed 6.5 years ago and NED for 4 years. I was fortunate (??) that my biopsy was negative and plans were made for me to have a lobectomy. Super Doc said that had they known I was stage IV, they likely would not have performed the surgery. I feel like I'm the exception, not the rule. Surgery followed by chemo, radiation, and SBRT gave me a fighting chance. Please ask us anything. We're here to support you. Justin1970, LouT, JuneK and 1 other 4 Quote Link to comment Share on other sites More sharing options...
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