Excellent presentation and Dr. Liu highlighted very clearly the spectrum of available drugs, their positives and negatives, and what considerations to take into account when making a choice. I would have liked to know more about what data is available tying Loralatinib as a more potent choice for variant 3. Haven’t come across it but he did mention it a couple of times in his talk.
Thank you very much for these profound explanations about the effects of ALK+ drugs. Dr. Liu is able to explain so clearly and share his extensive knowledge from medical practice with us. This helps us a lot in weighing up whether to switch from alectinib to lorlatinib after the Crown study. Many greetings from Germany and many thanks to everyone who helped make this video possible.
Aren’t ctDNA more accurate than CT? I have had my CEA markers slightly trending up from 1.4 (on Lorlatinib) for over a year, last blood work CEA is at 18.6, so something is happening, but the 2 Petscans I had, last one end of May, there is no change. I insisted on getting the Guardant 360 test during the marker trending up period. Had one in December and again end of March, and there is a change,I now have another mutation, and Lorlatinib is not effective for that new mutation, ALK L1198F. I started on crizotinib full dose, 2017 almost killed my liver in just few weeks. Then went on Alectinib, and because I research and listen to anything I find, in Dr Shaw presentation she said 2/3 of her patients needed some kind of reduction. I did reduce my dose, due to side effects. When markers trended up, I had Guardant 360 test, which showed I had a new mutation, and Lorlatinib was to act on the mutations I now had. Well, now proven by Guardant 360 test a have a new mutation again, but still have mutation that has been there all along, APC R232, except now it went from .4% to .5%, ( no FDA approved therapy available) The EML4-ALK is still there, reduced from 2.7%, then to ND and now increased to .7%. However there is a mutation that no one seems to know how to target, treat, (variant of uncertain clinical significance😊) and is accounting for the highest percent, 1.4%. I m deep diving on this one and all😊. ALK I117N has been ND since I was on Alecensa. Here is something interesting, FDA approved therapies for my new mutation is Lorlatinib, which I was on, when marker of CEA started to trend up. So what to do? I will be switching to Alectinib because that works against the EML 4 according to the Guardant 360. I know, it’s a gamble! But my mind, my gut , my research has not come up with anything out there that anyone prescribed , that would cover the 2 (3) active mutations. Doctors are just doing the same as I am, at this point, not sure which is the best route forward. Oncologist recommended Brigatinib, and I asked for data that led him to his reasoning, he backed off😊. My glass is always half full, I proceed with life as usual, always seeking how I could possibly keep myself at the best quality of life and as long as possible, considering I was diagnosed with NSCLC ALK+ in August of 2016. Was offered palliative care, my right side chest cavity and the mediastinum, clavicular ares were lighting up bright on the Petscan. I did not accept palliative care, I knew deep down in my soul this was not the end of me. There is a lot more to be said on the whole cancer diagnosis, treatment courses, testing, the system in general. I am now 72, live alone, need no assistance, cook my meals, garden accept in July and August , too hot), I do a hard workout in the pool minimum 5 days a week, not spending time on my diagnosis, cancer, except for researching anything, from nutrients I ingest, quality of the food I bring into the house, benefit of exercise for cancer patients and in general, new ways of approaching cancer treatments.....life is as good as we make it, under any circumstance. I ask myself often if I can do better, and honest answer to myself is yes, there is always room for improvement in some areas of my life. Knowledge is powerful tool. Thank you to all of you who work hard at providing us this information. Thanks to Dr Liu, I can now tell my oncologist, what I have told him before, it’s not higher caloric intake that has caused my weight gain, about 10%, the meds, it’s Lorlatinib that is messing with my system. Plus my cholesterol went from 195 to 417 in matter of two weeks from staring on Lorlatinib. That he understood, wanted to put me on statins. No thanks! (The weight gain he did not get, just cut down on calories, which is so out of date even from caloric theory. )I have brought the cholesterol down (without meds) into higher 200’, still high, but my triglycerides and also HDL ratios are good, still in progress to reduce. We each have our own journey, don’t stress, every cell in our body reacts to our thoughts. Stay positive, science says you will have a more pleasant and longer journey. 😍
Excellent presentation and Dr. Liu highlighted very clearly the spectrum of available drugs, their positives and negatives, and what considerations to take into account when making a choice. I would have liked to know more about what data is available tying Loralatinib as a more potent choice for variant 3. Haven’t come across it but he did mention it a couple of times in his talk.
Thank you very much for these profound explanations about the effects of ALK+ drugs. Dr. Liu is able to explain so clearly and share his extensive knowledge from medical practice with us. This helps us a lot in weighing up whether to switch from alectinib to lorlatinib after the Crown study. Many greetings from Germany and many thanks to everyone who helped make this video possible.
Aren’t ctDNA more accurate than CT? I have had my CEA markers slightly trending up from 1.4 (on Lorlatinib) for over a year, last blood work CEA is at 18.6, so something is happening, but the 2 Petscans I had, last one end of May, there is no change. I insisted on getting the Guardant 360 test during the marker trending up period. Had one in December and again end of March, and there is a change,I now have another mutation, and Lorlatinib is not effective for that new mutation, ALK L1198F.
I started on crizotinib full dose, 2017 almost killed my liver in just few weeks. Then went on Alectinib, and because I research and listen to anything I find, in Dr Shaw presentation she said 2/3 of her patients needed some kind of reduction. I did reduce my dose, due to side effects. When markers trended up, I had Guardant 360 test, which showed I had a new mutation, and Lorlatinib was to act on the mutations I now had. Well, now proven by Guardant 360 test a have a new mutation again, but still have mutation that has been there all along, APC R232, except now it went from .4% to .5%, ( no FDA approved therapy available) The EML4-ALK is still there, reduced from 2.7%, then to ND and now increased to .7%. However there is a mutation that no one seems to know how to target, treat, (variant of uncertain clinical significance😊) and is accounting for the highest percent, 1.4%. I m deep diving on this one and all😊. ALK I117N has been ND since I was on Alecensa. Here is something interesting, FDA approved therapies for my new mutation is Lorlatinib, which I was on, when marker of CEA started to trend up. So what to do? I will be switching to Alectinib because that works against the EML 4 according to the Guardant 360. I know, it’s a gamble! But my mind, my gut , my research has not come up with anything out there that anyone prescribed , that would cover the 2 (3) active mutations. Doctors are just doing the same as I am, at this point, not sure which is the best route forward. Oncologist recommended Brigatinib, and I asked for data that led him to his reasoning, he backed off😊. My glass is always half full, I proceed with life as usual, always seeking how I could possibly keep myself at the best quality of life and as long as possible, considering I was diagnosed with NSCLC ALK+ in August of 2016. Was offered palliative care, my right side chest cavity and the mediastinum, clavicular ares were lighting up bright on the Petscan. I did not accept palliative care, I knew deep down in my soul this was not the end of me. There is a lot more to be said on the whole cancer diagnosis, treatment courses, testing, the system in general. I am now 72, live alone, need no assistance, cook my meals, garden accept in July and August , too hot), I do a hard workout in the pool minimum 5 days a week, not spending time on my diagnosis, cancer, except for researching anything, from nutrients I ingest, quality of the food I bring into the house, benefit of exercise for cancer patients and in general, new ways of approaching cancer treatments.....life is as good as we make it, under any circumstance. I ask myself often if I can do better, and honest answer to myself is yes, there is always room for improvement in some areas of my life. Knowledge is powerful tool. Thank you to all of you who work hard at providing us this information. Thanks to Dr Liu, I can now tell my oncologist, what I have told him before, it’s not higher caloric intake that has caused my weight gain, about 10%, the meds, it’s Lorlatinib that is messing with my system. Plus my cholesterol went from 195 to 417 in matter of two weeks from staring on Lorlatinib. That he understood, wanted to put me on statins. No thanks! (The weight gain he did not get, just cut down on calories, which is so out of date even from caloric theory. )I have brought the cholesterol down (without meds) into higher 200’, still high, but my triglycerides and also HDL ratios are good, still in progress to reduce. We each have our own journey, don’t stress, every cell in our body reacts to our thoughts. Stay positive, science says you will have a more pleasant and longer journey. 😍