LexieCat Posted September 3, 2020 Share Posted September 3, 2020 He really IS awesome. The whole visit (which was by video) was over an hour (I tried to record it and the dang recording didn't work). His take--he thinks the next-gen sequencing and liquid biopsy were worth doing and he said he'd order them. On the treatment side, though, he thought he would recommend exactly the same as what the MD Anderson oncologist recommended--carboplatin, Alimta, & Keytruda--four cycles and then continue the Alimta/Keytruda indefinitely, followed by radiation. One difference--he would scan after two cycles to assess response, rather than waiting for three. And he agreed with the other guy that the only protocol that could be considered "curative" would be the chemo/immunotherapy with concurrent radiation, but he too felt that due to the location of the tumor and lymph nodes in my chest (which are on both sides of the esophagus), that approach would be too toxic for me. Despite the agreement regarding approach, I'm inclined to go ahead and switch to Penn. I'd rather be working with him, for one thing, and I feel like Penn would be in the best position to locate any clinical trials or deal with any major complications that might come up. I'll make my decision after my consult with Dr. Wilson (RO #2, also with Penn) tomorrow. Dr. Bauml said he'd be fine with whatever I decide, and even if I were to stay with MD Anderson he'd be happy to continue to be a resource for consult as needed. I just feel like the communication with him was much more comfortable, all in all. I felt more "heard" and I felt like his answers were more responsive to what I was getting at. So for right now, I have a blood draw for the liquid biopsy (which will be at the same location as my appointment tomorrow with Dr. Wilson) and he's ordering the tissue samples for the next-generation sequencing testing. He wants a new CT scan just to get a baseline, since it's been 5 weeks since my PET-CT. He told me to go ahead and have my port placed next week, as planned, and that I could start my infusion the same day (as previously planned) if I want to switch to Penn. I'll have to go into Philadelphia for the infusions, but it's only about 10 minutes further in terms of driving time. I believe the radiation could be done in NJ--I'll find that out tomorrow. Glad I went--if nothing else, at least I feel more confident we are on the right track. Link to comment Share on other sites More sharing options...
Sabacat Posted September 3, 2020 Share Posted September 3, 2020 Wow! Sounds great!!! Since you’ve now had two docs say continue with Alimta and Keytruda, I’m starting to wonder why mine is planning only Keytruda after 4th cycle. We, also, are having CT after 2nd (well, technically the morning before 3rd to be precise). I wouldn’t be comfortable going longer without a check on progress. They won’t consider radiation for me since stage 4, but thinking maybe if we get good response there will be an opportunity to restage. That said, with proximity to esophagus and my Battetts history, it might be a no go no matter what. Really sounds like you’ve got a super team lined up! Link to comment Share on other sites More sharing options...
LexieCat Posted September 3, 2020 Author Share Posted September 3, 2020 I really don't know why they are continuing the Alimta and I forgot to ask. I'll try to remember, next time. Or if you see your doctor next, maybe you can ask him why it's not being continued in your case. I'm feeling much better now, though--like I'm definitely on the right track. I did tell him I wasn't afraid of aggressive treatment (kinda pushing toward the concurrent chemo/radiation), but he said it would have so much of a negative impact on quality of life that he would be VERY reluctant to do it. I just wanted to make sure he knew I could be up for whatever's necessary, but given that two doctors have STRONGLY advised against it, I think I should probably listen. He, too, put up the PET-CT images (sharing his screen) and he pointed out the same concerns in terms of location that the other oncologist did. So I think this may be one of those situations where discretion is the better part of valor. He said, pretty bluntly, that if they do that, my quality of life would suck. Link to comment Share on other sites More sharing options...
Rower Michelle Posted September 3, 2020 Share Posted September 3, 2020 That’s really good news. Happy to hear about it! For Stage IV “vanilla” lung cancer Alimta/Keytruda is maintenance therapy. A friend of mine is going on four years of this combo & doing well. Link to comment Share on other sites More sharing options...
LouT Posted September 11, 2020 Share Posted September 11, 2020 Lexie, I often just lurk on chemo posts because I have no valid experience, but it is great that you went for that second opinion. That's a lesson to folks like me, should the need ever arise. Thanks for sharing all this. Lou Link to comment Share on other sites More sharing options...
Lisa Haines Posted September 12, 2020 Share Posted September 12, 2020 Not sure how Imissed this? (I am still adjusting to this forum). I am very hapoy it went well and hope you will soon be on the road to treatment. I'll be interested in the genomic testing results. Happy they were covered for you. Lisa Link to comment Share on other sites More sharing options...
LexieCat Posted September 13, 2020 Author Share Posted September 13, 2020 16 hours ago, Lisa Haines said: I'll be interested in the genomic testing results. Happy they were covered for you. Actually, it's not clear the liquid biopsy WILL be "covered"--the Nurse Navigator told me my insurance company (BC&BS) was notorious for denying coverage for it. She said I should expect to receive a denial and bills, but not to worry--Penn has an agreement with Guardant, the testing company, to make sure I will not ultimately be responsible for the bill. First infusion scheduled for Tuesday! I'm ready to rock this thing. I just wish I didn't still have so much shoulder pain from the fall. Link to comment Share on other sites More sharing options...
Lisa Haines Posted September 13, 2020 Share Posted September 13, 2020 1 hour ago, LexieCat said: Actually, it's not clear the liquid biopsy WILL be "covered"--the Nurse Navigator told me my insurance company (BC&BS) was notorious for denying coverage for it. She said I should expect to receive a denial and bills, but not to worry--Penn has an agreement with Guardant, the testing company, to make sure I will not ultimately be responsible for the bill. First infusion scheduled for Tuesday! I'm ready to rock this thing. I just wish I didn't still have so much shoulder pain from the fall. I am happy to hear you will not have to pay, but it still "irks" me that the insurance companies are not providing coverage to us for such vital testing. Let's ALL hope we can continue to push to get Genomic testing covered for everyone! Best wishes for your infusion on Tuesday! Sorry about your shoulder pain, why is it that we always have to deal with more than one issue at a time. Hopefully, that will improve each day. Take care, Lisa Link to comment Share on other sites More sharing options...
Lisa Haines Posted September 13, 2020 Share Posted September 13, 2020 PS: My first line of treatment (back in early 2015) was Carbo and Alimta and within a few months I was on Alimta maintenance and NED. Hoping it works very well for you. I never found it to be a terribly difficult chemo treament. I felt fine until about day 4 and then would be really wiped out for about 48 hours and then bounce back. That was also the day they stopped the Dex (Steroids) and I'm sure that's typical. I was really pretty fatigued and had some nausea, but nothing terrible. I could control it well with Zofran. I also kept very well hydrated and that helped a great deal, the one time I did get dehydrated I ended up going in for IV fluids and IV Zofran, as not having enough fluids made me feel much more nausea. Back then, we did not have Keytruda or any of the Immunotherapy drugs (they were FDA approved later that year). I did eventually move on to Immunotherapy (Opdivo) as my second line treatment and it worked amazingly well and is why I'm here and "Stable" today! Hope it goes very well, and hope to see you at the next Zoom too. Link to comment Share on other sites More sharing options...
LexieCat Posted September 13, 2020 Author Share Posted September 13, 2020 Thanks, Lisa, I appreciate the encouragement. I hope it goes well for me, too. I'm trying to approach this the same way I did giving birth--you hear all the childbirth horror stories and the best advice I gave myself was what I'm telling myself now--prepare for the worst; hope for the best. Hoping your surgery this week goes well, too--what day is it scheduled for? Link to comment Share on other sites More sharing options...
Deb W Posted September 13, 2020 Share Posted September 13, 2020 Lexie, I was on the same regimen of Carbo/Alimta/Keytruda. On days 4-9 I experienced fatigue and nausea. The fatigue was rough, but I think a lot of it had to do with coming off of the steroid. It worked very well. After 4 treatments they dropped the carbo and I was put on maintenance of Alimta/Keytruda I've had two of those and now I experience the fatigue and nausea at day 7 and only for 3-4 days. - they are thinking I will need this until January, and if everything goes well I will be Keytruda alone for about 1 year. I think you'll manage it just fine. Good luck. Deb Link to comment Share on other sites More sharing options...
Sabacat Posted September 13, 2020 Share Posted September 13, 2020 Had my first round of this cocktail on Tuesday, 9/1. Got the Dex on the first two days afterward, which was great. Day 3 things started to get a bit less pleasant (I think nausea was Day 4) - but that was also the day that I took the disastrous Compazine. I now have Ondansetron on hand, so hoping for a better experience next go-round, which will be infusion on Monday, 9/21, barring any complications. Link to comment Share on other sites More sharing options...
Lisa Haines Posted September 13, 2020 Share Posted September 13, 2020 Lexie, My surgery is tomorrow morning and I'm now totally ready to get it over and done with! Had a fun day with my Grand-daughter yesterday and today I'm cleaning the house (with the help of my husband), so I can come home to a nice clean house. There are lots of things I will be restricted from doing for the first few weeks, so I wanted to be sure the house was totally clean and all set. Luckily, he'll be home at least one week and can take more time, if needed. I am optimistic this one will be much easier than my first one, I know what to expect and I'm not going in with "undiagnosed Stage IV Cancer" which is what happened the first time. I was only 4 weeks post op when we found my brain met and then learned I had Stage IV NSCLC. l'll NEVER understand how they missed it on all the chest xrays I had back then but I can't dwell on that anymore. I'm simply happy to be stable this time and can't wait to be walking again without all this pain! It'll also be nice to be able to use my "Port" this time too. I really found Chemo (that combo) to be much easier than I expected and hope you will too. Sabacat, I did not have any luck using Compazine for nausea and like you, felt pretty good until the Dex wore off. I had much better results with the sublingual Zofran and hope you will too. HOPE you both do great on your next infusions! Link to comment Share on other sites More sharing options...
Sabacat Posted September 14, 2020 Share Posted September 14, 2020 Thanks, Lisa! I'll definitely be thinking of you tomorrow!!! Susan Link to comment Share on other sites More sharing options...
Deb W Posted September 14, 2020 Share Posted September 14, 2020 Thinking of you today, Lisa.🙏 Link to comment Share on other sites More sharing options...
Lin wilki Posted September 14, 2020 Share Posted September 14, 2020 Hope all goes smoothly with your surgery Link to comment Share on other sites More sharing options...
LouT Posted September 14, 2020 Share Posted September 14, 2020 Lisa Best of luck to you. Hoping for a great outcome. Lou Link to comment Share on other sites More sharing options...
Lisa Haines Posted September 14, 2020 Share Posted September 14, 2020 All went great-in recovery now and gong to my room soon. Happy it's over. Link to comment Share on other sites More sharing options...
LexieCat Posted September 14, 2020 Author Share Posted September 14, 2020 YAAAAYYY!!!!!! Was just thinking about you--glad it went well. Get some good rest. Link to comment Share on other sites More sharing options...
LouT Posted September 14, 2020 Share Posted September 14, 2020 WOOHOO!!! Rest up Lisa and thanks for the update. So glad it all went well. Lou Link to comment Share on other sites More sharing options...
Tom Galli Posted September 14, 2020 Share Posted September 14, 2020 Lisa, Look forward to hearing you are lapping the ward! Stay the course. Tom Link to comment Share on other sites More sharing options...
Sheryl E Posted September 15, 2020 Share Posted September 15, 2020 Lisa, Good to hear you are out of surgery!! Hopefully home soon to a nice, clean house😊 Now time to heal! Link to comment Share on other sites More sharing options...
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