LexieCat Posted July 28, 2021 Share Posted July 28, 2021 Hey, folks, rather than continue that EXTREMELY long thread about the trial, thought this was a good place to start a new one. I haven't been posting a whole lot because, frankly, I'm still feeling a bit like someone let all the air out of my tires. I've been home for about a month and still feeling fatigued, some loss of appetite, lightheadedness when standing/walking, and I'm a bit sick of it. HOWEVER. This week I had my first post-treatment CT scans and saw the doc. The doc had warned me not to expect too much from the very first scan--that a good response could occur over time. But the doc and the rest of the research team are over the moon with my scan results. All the tumors are GREATLY reduced in size--looks like most by about one-third. All the lymph nodes are back to normal size. Areas of consolidation are thinning out. Spots on liver no longer visible. And the thing is, the way this treatment works, a successful result will show continued reduction in tumors over time. My birthday is next week, and the research nurses marched into the exam room singing, "Happy Birthday," with a brownie and a muffin with a candle stuck in it. The scan results made for a pretty nice birthday present! As far as my other symptoms go, the doc referred me to a pulmonologist just to rule out any issues there, ordered a lab test for Cortisol to check adrenal gland function, and also put in a prescription for a drug called Remeron, which is apparently an antidepressant but improves appetite and energy level. They tell me it takes some time to work, but I figure it's worth a try. I'll tell ya--getting this good news already has me feeling better! Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 28, 2021 Share Posted July 28, 2021 They weren’t kidding when the team said this trial was swinging for the fences. In this case the bases were loaded! That is great news!!!! You might have to ask how your case will be designated for research publication so we can say “we knew you when”….. awesome!!! Link to comment Share on other sites More sharing options...
Judy M2 Posted July 28, 2021 Share Posted July 28, 2021 Great news! Hopefully you'll start to regain your strength with the new prescription. And an early Happy Birthday to you! Link to comment Share on other sites More sharing options...
Tom Galli Posted July 29, 2021 Share Posted July 29, 2021 Lexie, Wonderful news on your scan results. Can't wait till the NED report! Stay the course. Tom Link to comment Share on other sites More sharing options...
TJM Posted July 29, 2021 Share Posted July 29, 2021 That is truely awesome. And Happy Bday! Mine is also next week. The big 60... Slow and steady. Slow and steady. You got this. Tom Link to comment Share on other sites More sharing options...
LouT Posted July 29, 2021 Share Posted July 29, 2021 Lexie, Sorry I missed this yesterday. I was thinking about you this morning and wondering when you'd get tested. This is so super I can hardly stand it. And, from all you say, this is just the beginning. I can't wait to hear about your future tests. Congratulations; although you are still fatigued and all I am thrilled with the test results and you deserved the Happy Birthday Tribute. Lou Link to comment Share on other sites More sharing options...
BridgetO Posted July 30, 2021 Share Posted July 30, 2021 Great results! Hurray for you and TIL! And happy birthday. I hope the shrinkage continues. I hope your energy increases soon. BTW, I thought of you the other day when I fell on my butt off a chair I was standing on. Link to comment Share on other sites More sharing options...
hillham Posted July 30, 2021 Share Posted July 30, 2021 Wow! You are an inspiration. Being new at this, I've often marveled at how brave you are in the face of this disease. I'm so happy to hear about the positive scans!!! Hope you feel better soon too! Link to comment Share on other sites More sharing options...
catlady91 Posted July 30, 2021 Share Posted July 30, 2021 Mazel tov!! Excellent news! May the good news keep on rolling and happy birthday 🎉 Link to comment Share on other sites More sharing options...
TJM Posted July 31, 2021 Share Posted July 31, 2021 23 hours ago, BridgetO said: Great results! Hurray for you and TIL! And happy birthday. I hope the shrinkage continues. I hope your energy increases soon. BTW, I thought of you the other day when I fell on my butt off a chair I was standing on. I missed that. Normally when Lexi hurts herself I'm next. Going to be extra careful now..😂😁 Peace Tom Link to comment Share on other sites More sharing options...
Dona Posted August 1, 2021 Share Posted August 1, 2021 Great news, LexiCat! I've been thinking about you since you are usually a regular poster, and the last post I read from u was a bit gloomy. Happy birthday and hope good news continues to rain down on you! Link to comment Share on other sites More sharing options...
Dallasdoug Posted August 2, 2021 Share Posted August 2, 2021 Way to go, LexiCat! Link to comment Share on other sites More sharing options...
DMiller Posted August 2, 2021 Share Posted August 2, 2021 This is excellent news! So happy to here the good results. Keep up the good work! HIP HIP HOORAY!!!! Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted August 3, 2021 Share Posted August 3, 2021 Wonderful news!!! Link to comment Share on other sites More sharing options...
LexieCat Posted August 5, 2021 Author Share Posted August 5, 2021 Just ran across this tweet from my doc (the one running the trial): Link to comment Share on other sites More sharing options...
LexieCat Posted August 5, 2021 Author Share Posted August 5, 2021 My buddy Linda, who is also in the trial, went for her scans this week--unfortunately, she has pneumonia, which is obscuring everything. They put her on antibiotics, and we have our fingers crossed that she gets good news next month. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 5, 2021 Share Posted August 5, 2021 Wow, your lungs are now famous in the Twitterverse!!! Link to comment Share on other sites More sharing options...
LouT Posted August 5, 2021 Share Posted August 5, 2021 Lexie, Is that you??? Wow! As Michelle said; "we have a star among us". Now I want to see you famous for being one of the first true success stories in this trial. Lou Link to comment Share on other sites More sharing options...
LexieCat Posted August 5, 2021 Author Share Posted August 5, 2021 LOL, my doc really is excited about it. My surgeon, Dr. Shersher, confirmed that Dr. Hong interrupted his surgery to share my results. He said it was the best interruption he's had. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 5, 2021 Share Posted August 5, 2021 Wow, such great news… please let our fellow survivor sister know we are rooting for her as well. I hope she feels better soon. Link to comment Share on other sites More sharing options...
LexieCat Posted August 5, 2021 Author Share Posted August 5, 2021 Will do! She's another tough cookie. She got to hang out at the shore with her grandkids last week, so she's doing OK. They've got her on antibiotics and hopefully those will knock out the pneumonia. Oh, and the other woman, Ellen, who is in the trial at MSK in NYC had her tumor harvest and is going into the hospital to start treatment next week. We're all staying connected so we can compare notes. Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 5, 2021 Share Posted August 5, 2021 The Science Crusaders Club! Link to comment Share on other sites More sharing options...
BridgetO Posted August 5, 2021 Share Posted August 5, 2021 AKA The Tough Cookie Club. Motto: "These cookies don't crumble." Link to comment Share on other sites More sharing options...
Lisa Haines Posted August 10, 2021 Share Posted August 10, 2021 On 8/5/2021 at 5:37 PM, LexieCat said: Will do! She's another tough cookie. She got to hang out at the shore with her grandkids last week, so she's doing OK. They've got her on antibiotics and hopefully those will knock out the pneumonia. Oh, and the other woman, Ellen, who is in the trial at MSK in NYC had her tumor harvest and is going into the hospital to start treatment next week. We're all staying connected so we can compare notes. Just read an update from "E"-- She is now settled into her room and starts day one tomorrow! I HOPE she has the same positive results as you ! This is so inspiring to know three of you are all in the same tri Link to comment Share on other sites More sharing options...
LexieCat Posted August 10, 2021 Author Share Posted August 10, 2021 Nice she got a day to settle in--I had no settling-in time, they checked me in and hooked me up! And actually, today will be Day -5. They count the day you receive the TIL as Day 0. Link to comment Share on other sites More sharing options...
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