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NSCLC Stage IV - newbie


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Hello, I recently joined and am really amazed by the info and encouragement here. I was recently diagnosed with NSCLC adenocarcinoma in the lower lobe of right lung, stage IV  (both lungs and small spots on my liver). I'm EGFR+ and so my oncologist prescribed Tagrisso, not started yet. Yesterday I was thrown for a loop as he is now recommending that I join a phase 3 trial. The trial has 2 arms, one with Tagrisso alone, the other with Tagrisso + Avastin (ECOG-ACRIN). I read that the phase 2 trials were not really successful, so I'm highly conflicted about joining the trial at this time as I was excited to be starting the Tagrisso. 

Any thoughts?

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Hi, Viv, and welcome! I'm also Stage IV, but have no actionable mutations. After a good initial response to chemo/immunotherapy, my cancer started to progress and I'm starting a clinical trial this week (TIL therapy). 

It seems to me like this trial is comparing Tagrisso alone to Tagrisso plus Avastin, to see which is more effective. So to the extent the trial was "not really successful," it sounds like they didn't feel adding Avastin helped much. I kinda doubt they would continue to the next phase if there were any indication adding the Avastin to the treatment was in any way harmful to patients. 

I'd talk to your oncologist about why he thinks this trial would potentially be of benefit to you. If that makes sense, then there's probably no harm in participating in the trial. But it's always ultimately up to you. You'd be getting the Tagrisso either way.

Do you have a link to the trial?

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Hi NYViv, I'm from Rockland County! We have a few new NY members. 

I am Stage IIIB and EGFR+ also and have taken Tagrisso since March 2020. I previously had chemo and radiation just before starting Tag. I've found Tag to be very tolerable and effective. It's a miracle pill. 

I'm a member of 3 private LUNGevity FB groups related to EGFR and Tagrisso but I haven't heard of anyone in the trial that's being suggested for you. I will post the question in those groups and get back with any answers. I can also list the groups if you're interested in joining. 

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Thank you Lexiecat and Judy for your responses. Much appreciated. I'll try and find and post the link to the study. I am leaning towards doing the trial but a bit emotional about new decision making. Again thanks.

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I heard back from one member who was invited into the trial but declined because of "logistics challenges". I wonder whether they are looking for treatment-naive participants, meaning no prior treatments. Looking forward to learning more about it. 

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Hi Judy, yes they seek treatment naive patients. Indeed the logistics are a bit onerous compared to Tagrisso' simplicity. Frequent check-ins and testing are required to monitor for side effects etc.

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A couple of members in the FB groups have taken both Tag and Tag plus Avastin but not as a trial. Both drugs cross the blood-brain barrier so it's possible they are looking at the Avastin as a booster for brain mets.

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Remember, there's never any obligation to participate in any particular trial. The one I'm about to start is gonna be pretty brutal on my body, but if I didn't think I had a shot at a terrific outcome for myself, there's no way I'd put myself through that. 

If I were you, I'd ask the oncologist to spell out exactly how he thinks this could be of potential benefit for YOU. If you're not satisfied with the answer, then I think you want to carefully consider whether to do it. 

I'm in a couple of other studies--one to assess the benefits of looping in palliative care at the beginning of treatment, and the other involves taking additional blood samples to learn more about liquid biopsies. Neither one directly affects my clinical outcome, so even though there's no direct benefit to me, there's no downside and neither is burdensome to me. Treatment studies, though, are a more serious matter.

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Here is another answer about the trial. Please note that I highly recommend a port if you'd be getting any chemo. 

"I was in this trial when first diagnosed 2/18. I had brain mets at the time so the avastin made some sense. The downside is that I had to get a port right away in my journey--something I could have avoided for several years had I not taken the avastin. I progressed 9/19--about the time it was predicted I would progress had I only taken tagrisso. Hard to say what the avastin added to the treatment but it had a negative effect on my kidneys over time and added to the side affects of the tagrisso. If I had it to do over, with brain mets I would do the combo, without I would just take tagrisso. Taking avastin up front means you will not likely be able to take it later in your journey given the impact on the kidneys. I might ask your doctor the pros and cons of that. I did not ask that question but wish I had."

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And another member said that her husband took both Tag and Avastin but not as part of a clinical trial. He had progression at 10 months and they don't think there was any benefit to Avastin. I see many success stories with just Tag alone, and I feel like I'm one of them. 

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Dr. Christian Rolfo, who studied EGFR for his PhD, is leaving  Maryland for Mt. Sinai Hospital in NY. One of the members posted that she was sorry to lose him. He may be a good resource for you when he gets there. 

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Thanks all, this is very intense. But your insights are much appreciated. I have decided to go ahead with the trial but must confess that I'm closely monitoring the results for possible self extrication if I don't like where it's going.

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Right--good to remember you can withdraw from a trial at any time.

Best of luck--I hope it works great for you!

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