TJM Posted April 16, 2021 Share Posted April 16, 2021 5 hours ago, LexieCat said: Thanks, Michelle. No immediate plans for the kiddos to come out here, but hopefully I can get out to Colorado for Christmas. I talked to both of them today, as well as their dad and my brother. Everyone is, of course, disappointed and concerned, but also hopeful about the trial. Well girl, you managed to cheer me up with the Christmas comment. It's going to be soooo nice this year. Maybe some early shopping? Luv ya Tom Link to comment Share on other sites More sharing options...
LexieCat Posted April 16, 2021 Author Share Posted April 16, 2021 I just noticed this clinical trial mentioned on the forums: https://forums.lungevity.org/topic/48179-a-phase-2-multicenter-study-of-autologous-tumor-infiltrating-lymphocytes-ln-145-in-patients-with-metastatic-non-small-cell-lung-cancer/ I looked it up, and one of the sites is MD Anderson/Cooper Hospital in Camden County, where I had my original diagnoses and lobectomy. It sounds intriguing, and it looks to me like I fit the enrollment criteria. So I sent my oncologist a message asking for his thoughts on it. I told him I was very interested in the trial we discussed yesterday but would like to know his thoughts on this one, as well. I asked for him to give me a call to discuss when he has a chance. Just making sure I cover all the bases to find whatever is most likely to be effective at this point. Link to comment Share on other sites More sharing options...
Deb W Posted April 16, 2021 Share Posted April 16, 2021 Hi Lexie, I am so sorry about the recent result and all that you're having to go through. I am sending good vibes your way. Please keep us posted as you go through this process. Deb Link to comment Share on other sites More sharing options...
Susan Cornett Posted April 17, 2021 Share Posted April 17, 2021 Well, a string of four letter words left my mouth as I read this but, as I tend to do, I looked for the silver lining here and that is your clinical trial options. Hoping next steps are smooth for you. Thinking about you - Link to comment Share on other sites More sharing options...
LexieCat Posted April 17, 2021 Author Share Posted April 17, 2021 Thanks, everybody, for the encouraging words. I sent my oncologist a link through the portal to ask what he thought about the autologous immunotherapy trial mentioned above. He called me back (yay for a responsive doc!) and said he thought it was very interesting. His only concern would be the lead time involved. Apparently it's a few weeks for most treatments involving cell cultures. He said I'm in good enough shape physically that it probably wouldn't be a problem, but that I should ask how long the lead time is and that I should be comfortable with that. He told me he brought up my case at their research meeting today, and someone else suggested another trial at Penn--this one: https://www.clinicaltrials.gov/ct2/show/NCT04495153. That one apparently involves actually injecting the tumor and lymph nodes (via bronchoscopy) with an adenovirus drug. For that trial, I'd stay on the same Alimta/Keytruda treatment with the addition of this new drug. The bottom line, he tells me, is that the disease/treatment space where I am right now is one that has literally hundreds of trials going on. Obviously I can't read up on every one. Right now I'm going to try to make a choice among these three--the two at Penn and the one at MD Anderson/Cooper. I called MD Anderson yesterday and asked to speak to someone about a specific clinical trial. Got a VM, left a detailed message, and no callback. I'll try again on Monday. I'd like to stick with Penn and Dr. Bauml if I can, but I have to look at all the options. One thing that gives me pause about the autologous immunotherapy trial is the immunosuppressive preparation required. I don't know how extreme that is, but it's one of the questions I want to ask. Also, it sounds as if the tumor sample requires a VATS-type surgery, rather than a biopsy sample. Not sure I wanna go there at this point. I want to get settled on one of these by early next week so I can get any necessary surgical procedures/biopsies scheduled and start going through all the necessary groundwork. In other news, I'm glad my employer-paid long-term disability kicked in this week. It looks like this is gonna be a full-time job for a while. Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 17, 2021 Share Posted April 17, 2021 Hi Teri, It must be a little overwhelming to know there are so many options available, making the decision is a combination of science and pure gut instinct. Have you also contacted the research coordinator at the GO2Foundation to discuss? One of my group members used the service & found them helpful in making a clinical trial decision. I remember one of the lung cancer living rooms there was a ten year plus survivor who described herself as a clinical trial junkie. I’m so grateful you’re willing to go down this path as we will all benefit in the future. Michelle Link to comment Share on other sites More sharing options...
LexieCat Posted April 17, 2021 Author Share Posted April 17, 2021 I'm inclined, right now, to stick close to home, as long as there are potentially helpful trials here. Right now, my situation isn't that unusual. I have plain-vanilla adenocarcinoma, no actionable mutations, and have been through only one line of standard treatment, with mild progression. My one bone met appears to have been treated and completely resolved. At some point, of course, I might need to go further afield in search of a trial, but at the moment--to some extent, anyway--it's anyone's guess what might be MOST effective. I did ask my oncologist whether any of these would likely foreclose other treatments in the future, and he said it just depends on the eligibility criteria, which varies from trial to trial. He also noted that trials are opening and closing every day. Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 17, 2021 Share Posted April 17, 2021 That makes sense to me- one of my friends went back and forth by car to Kentucky for a trial last year during the start of the pandemic- it sounds far way but from KC it’s about ten hours- too long for me to want to sit in a car even without a pandemic.... you’re not too far from the SNJ MSK site so if wanted to go a little further that’s a potential option down the road. Glad the LTD is kicking in- hoping there’s not a mountain of paperwork... Link to comment Share on other sites More sharing options...
LexieCat Posted April 17, 2021 Author Share Posted April 17, 2021 15 minutes ago, Rower Michelle said: you’re not too far from the SNJ MSK site so if wanted to go a little further that’s a potential option down the road. Glad the LTD is kicking in- hoping there’s not a mountain of paperwork... I'm assuming you mean North Jersey--there aren't any MSK locations in South Jersey. Honestly, though, as much as I'd like to be closer to family out west, I think I'm better off here for the time being. Between NYC and Maryland there are a lot of terrific cancer treatment centers, all within 2-3 hours' drive. As for the LTD, I was already receiving the STD from the same company--that covered me during the 180-day waiting period for the LTD. Only a bit of paperwork from me required, though I did have to make sure all my doctors jumped through the necessary hoops. I've been approved now, so I'm done for the moment. Benefits last only until I reach my SS full retirement age, which will be December 2022. Then I'll be left with SSDI and my pension from my government job, as well as my retirement savings. Going on Medicare is going to cost me, big-time, though--my retirement pays for most of my Medicare Advantage plan, but because of my income (not to sound like the whiny, privileged person I am), I will be paying about five times as much for health coverage when I go on Medicare as I'm paying now! It will drop back down when my LTD ends, but still. Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 17, 2021 Share Posted April 17, 2021 Some of my friends go to MSK in Middletown over in Monmouth County.. one of them started at UPenn & transferred to MSK because the clinic practice is smaller & easier to navigate. As you said, there’s lots of options for you. As for the health insurance, the costs are insane. COBRA was a killer for us- for the last two years we essentially bought a new car. We have excellent coverage through the Teamsters now except none of the claims get processed correctly the first time. Managing the paperwork is like having a part time job Link to comment Share on other sites More sharing options...
LexieCat Posted April 17, 2021 Author Share Posted April 17, 2021 Yeah, Monmouth is a haul for me--like driving to NYC, minus some of the traffic. It would be over an hour and a half each way--not so bad now, but not pleasant in bad weather. Definitely doable if necessary, but wouldn't be my first choice. Like I said, I shouldn't complain. Even paying the highest Medicare premium isn't as bad as COBRA for most people. It just bites that I have to pay MORE money for something that's a government benefit than I had to pay for my coverage before that kicked in. Link to comment Share on other sites More sharing options...
islandgirls Posted April 17, 2021 Share Posted April 17, 2021 Sorry to hear about the progression, but I agree that I liked the fact that your doc used the term mild progression... Seeing all the stories on here makes me think this is not so unusual, although granted, disappointing. The roller coaster ride of this disease seems to be the major obstacle. You are so knowledgeable about your treatments, precise in your targeted plan and optimistic about the possibility of NED. So I echo the others in saying that we are all here for you, sitting in the rows behind you on that roller coaster. Just keep picturing the kiosk stand at the end of the ride, with the snapshot of you with your hands in the air and a big grin on your face. Victory! Keep going!!! 💜 Link to comment Share on other sites More sharing options...
huj123 Posted April 20, 2021 Share Posted April 20, 2021 @LexieCat, I'm very sorry to hear about the latest updates. But I'm optimistic because of how much you know more than a lot of nurses and doctors (at least from the doctors I've met!). Wishing you all the best - please let us know what you decide to do. Praying for you! Link to comment Share on other sites More sharing options...
ChiMama Posted April 21, 2021 Share Posted April 21, 2021 Well heck I am just getting caught up and saw this. Bummer about the progression BUT your new onc sounds awesome! So many possibilities for treatment. Will keep you in positive vibes! 💜 Link to comment Share on other sites More sharing options...
SamGirl50 Posted April 30, 2021 Share Posted April 30, 2021 Stay strong! Link to comment Share on other sites More sharing options...
Dona Posted July 17, 2021 Share Posted July 17, 2021 LexiCat, although this is only my first day on the lungevity site, it's clear to me how important you are in providing information，support and comfort to all of us going thru this sucky disease. I am sending hugs and good luck for your upcoming treatment. I look forward to your updates. Link to comment Share on other sites More sharing options...
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