Deb W Posted August 11, 2020 Share Posted August 11, 2020 Hi everyone, I am excited to report that my Oncologist said the scan was clear today. He didn't use the words NED - so I'm not sure if clear means the same thing as NED. I started the maintenance plan which is Alimta & Keytruda and then eventually drop the Alimta (not sure how many treatments before he drops it) so I'm hoping the extreme fatigue and nausea lessens. I also want to mention that there are a lot of reports that indicate Keytruda isn't effective when your PDL-1 is only 10%. That was not the case for me. Even with having the MET mutation - there are reports that say it is not effective. For me this regimen of Carbo/Alimta/Keytruda has been very effective. Later, if I were to have another recurrence, I have Trabecta. I asked him a question that's been bothering me for a long time and that is... why I went from October NED and in April I was stage IV. How could this be a slow growing tumor? He then looked at my pathology report from the surgery in March 2019 (done at a different facility). He said they only tested 8 lymph nodes and should have tested more than 10. So I wonder, perhaps if the cancer was in my lymph nodes since that time? I guess it doesn't matter now, but shouldn't there be a standard number of lymph nodes tested after surgery? I mean why is it different for some med centers? Here's what bothers me about my oncologist - he'll say maintenance is 2 years unless you want it longer? WHAT? I'm not the expert here. When I asked if I would have radiation he said he can check with the tumor board and see what the recommendation would be....but there is a risk of damage to the lung. I'm not qualified to make these decisions. Also, he said we can do the Keytruda every 3 weeks or double it and have it done every 6 weeks... again, I just want to know what's best. Thanks for all of your support. Deb Link to comment Share on other sites More sharing options...
LexieCat Posted August 11, 2020 Share Posted August 11, 2020 Congrats on your great scan! Sounds like your oncologist is someone you are going to have to pin down with specific questions. "What is the risk/benefit of these two options? Which do you think is best, and why? What are you basing that on?" It's frustrating for us patients that want the details. Link to comment Share on other sites More sharing options...
GaryG Posted August 11, 2020 Share Posted August 11, 2020 Deb W: I am thrilled you are having success because I am on the same plan. I am PD_L1 zero with no mutations so far and was very concerned about not being able to use Kytruda, my oncologist told me with the triplet it does not matter. I did some research (and we have to be careful with those) and found this for instance: "The Keynote-189 trial showed that using the triplet is more effective than using Keytruda alone in patients with metastatic NSCLC.(withoutEGFRorALKalterations )". Since it worked for you it is correct My oncologist also told me if things work ok for me and I go on maintenance that could last 2 years or more. With the advances in lung cancer drugs I am not worried as long as I get to the maintenance phase. As for major decisions like radiation, surgery and so forth, my oncologist gets his instructions from the tumor board as well because it is comprised of specialists and every one has his say. That is a big plus. I don't want a plumber pulling my teeth. If you have time, could you please elaborate on your road to success like how much tumor shrank after the first scan, second scan etc....? Again I am very happy for you and wish you complete N E D. Link to comment Share on other sites More sharing options...
Tom Galli Posted August 12, 2020 Share Posted August 12, 2020 Deb, Great news! No, better than great! Superb news. On the number of lymph nodes tested, the number tested during surgery results from the judgement of the surgeon. I'm not sure I've ever heard that there is a standard number tested during surgical biopsies. The surgeon has actual eyes on the nodes and is in the best place to determine what and where nodes should be resected for biopsy. As far as your medical oncologist comment on maintenance treatment, again we are dealing with judgement. In this case, both yours and your oncologist. As for radiation therapy, generally a radiation oncologist makes that determination. You might want to arrange a consultation with a radiation oncologist. I've found their prospective on lung cancer different from other medical professionals. And, I am a big fan of precision radiation. Stay the course. Tom Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 12, 2020 Share Posted August 12, 2020 5 hours ago, Deb W said: Here's what bothers me about my oncologist - he'll say maintenance is 2 years unless you want it longer? WHAT? I'm not the expert here. When I asked if I would have radiation he said he can check with the tumor board and see what the recommendation would be....but there is a risk of damage to the lung. I'm not qualified to make these decisions. Also, he said we can do the Keytruda every 3 weeks or double it and have it done every 6 weeks... again, I just want to know what's best. Hi Deb, Well that's great news! You must feel some degree of relief after the scans. I can totally understand lingering concerns about your oncologist, especially after what you've been through. Maybe I can shed some light on the issue. Your oncologist is looking at the treatment guidelines for Keytruda, which initially indicated the treatment is for a course of two years. The thinking is that the Keytruda works by "correcting" the immune system's ability to recognize the cancer cell and fight it. The idea is that Keytruda when it works, it works. Jimmy Carter received it for his brain tumor, I think he received it for only two years. Since Keytruda is fairly new to lung cancer treatment, the duration of treatment does have a good degree of controversy on whether or not to continue after the "standard" two year period. Right now there is not enough longitudinal data to evaluate so some patients come off after two years (and do well) while others stay on (and continue to do well). There's also some thinking that if there's a recurrence Keytruda will work a second time round too. It generally boils down to what guidelines commercial insurance companies are following and how much they are willing to pay. Medicare will continue payments, while private insurance, not so much. Two years is a long time from now in lung cancer research, who knows what the research will show and no doubt the Keytruda guidelines will change anyway. As for the double dosing every six weeks, that's brand spanking new from the FDA to limit cancer patients trip to the clinic and potentially reduce COVID risks. Stephen Hahn, MD is the head of the FDA and an oncologist from MD Anderson (I think he's a radiologist). I haven't had time to look for any studies on why this regime was changed. I'd hesitate before signing up for the double dose every six weeks. Why mess with something that works? You can always consider getting another opinion from a MET specialist, there are experts who are developing a good track record understanding how MET mutations respond to treatment for greater peace of mind. All in all, things are going really well. Enjoy the ride! Michelle Link to comment Share on other sites More sharing options...
BridgetO Posted August 12, 2020 Share Posted August 12, 2020 Deb, "clear" is great! Keep asking questions until you get answers that make sense to you. If something important doesn't make sense, there is the option of a second opinion. But don't let these concerns about future treatment spoil your clear time. For what it's worth, the surgeon who did my lobectomy removed 27 lymph nodes for biopsy. The surgeon who previously did my hysterectomy for a gynecologic cancer also took out 27. I think this was just a coincidence. BridgetO Link to comment Share on other sites More sharing options...
LouT Posted August 12, 2020 Share Posted August 12, 2020 Deb You made my day today. I love hearing clear!!! It’s what I heard on Monday. I’m so happy for you and while I have no experience with chemo, I see you’re getting great feedback from our family already. Today the sky will be a bit prettier because of your results. Lou Link to comment Share on other sites More sharing options...
Deb W Posted August 12, 2020 Author Share Posted August 12, 2020 Yes, it's a great day! Again, thanks to all for your thoughtful answers and kind remarks. Michelle, that is really good information to learn. Wishing you all the best, Deb Link to comment Share on other sites More sharing options...
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