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Great watch for all ALK patients

I had keytruda and chemo when i first got diagnosed,and then they discovered i was ALK+ and put me on alectanib,and i had loads of problems with reactions,i was on a reduced dose of 300mg twice a day that was working for 2yrs,they found something very small in me brain from the last brain scan 2mth ago,but not definate that its cancer,i have increased the alectanib to 450mg twice a day and seem to be tolerating it,and have another brain scan next month,i hope it has sorted it,if it was cancer in the brain.

Im an ALK + patient in England,i really hope they find something else that will work for me after alectanib and lorlatnib stop working,tho im still on alectanib at present.

I wish shaw was not presenting nvl-655 if you wanna see a totally new approach to alk a diff face needed

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. 😍

Go research!

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.

me diagnosed may 2019, recently changed to Lorla, so far so good, considering the alternatives.

thanks from israel, May 2019 diagnosed, Alec since, then resistance, now since one month Lorla. lorla gives good results, it looks so, quite challenging side effects. recently bio molecular blood test, got positive at least on 9 mutations, but only some of significance.

i am so proud to be diagnosed (2012) as alkpositive with more than ALKEML4 and G1202R, plus a few others, thriving or the opposite on Lorla since one month

in what way Alk awareness is different from other cancer awareness? (me in the club)

when is was the alk awarenesss month?

Thanks Collin.

Are you also exploring looking at Fenbendazol? Which seems to have helped stop lung cancer in some individuals, with no side effects.

It makes me so proud to be part of this group. Ken has a way of describing things so they are clearly understandable but not too dumbed down for us laypeople.

🤍🤍🤍

Keep up, ALK+ need research. This wonderful !

For Alk positive is match with car T cell therapy or immunotherapy ?

Great job, you are the best 😊

Great presentation. Interesting to learn about MRD and ALK+ focus on this.

Too much study and investigation drive crazy,

Excellent update and information! Thank you

Fantastic overview. I love it and hope to support leveraging AI for change detection, and identification of potential oligoprogression.

alot people know how to talk but don't know how to work. So boring

That was excellent all around! Really appreciate the speaker and moderators!

Im English and ALK+ i was diagnosed in june 2021,this site has helped me so much to understand whats happening to me,it also gives me so much hope...thank you.

How does ceritinib work on cancer patients.

Sorry, too much time spent on introductions!! Get to the answers….

The cost of the cancer drug usually very expensive.

Im from England,im 2/3 year alk+ diagnosed,on alectenib working great,i want to thank these brillant drs and scientists in the united states,that have created drugs that is keeping my cancer stable,and trying to cure ALK cancer....thank you.

thank you to our amazing ALK positive advocates for making an easier path for us

Is it possible to join to the team? My wife is the case. Myself I'm MD and I have PhD. I was biophysics and physiology lecturer at the Semmelweis University Budapest, Hungary. Also worked in biotechnology (ADME-Tox), in generic preclinical drug development (generic Doxil). My publications you can find in the Medline (Bathori-G, liposomes, mitochondriology, and pharma are the topics)

My husband is alk+ and also taking up lorlatinib.

I was diagnosed june 2020 as well, with stage 4 ALK lung cancer

Great job!

All this information is only good for the states , we don’t have the same information for Canada.

Great talk. Thanks.

Thanks, very useful. Stage four with 40+ brainmets, organs, bones. On tki no five, lorlitanib. Diagnosed jan 2016. Last scan, ned. Experiencing relevant knowledge slowly seeping in to the medical community here in norway. Fortunately a lot of reserch and for the alk positive, so very grateful to that. Hopeful that development of vaccines etc will be fruitfull.

Very helpful. Thank you!

This made me emotional. I only found out I was ALK positive Stage 4 Terminal with brain metastasis about 5 months ago. It's been a pretty terrible ride. I don't know if I'll be around for 5 months or 5 years or whatever. All your long term goals are out the window, but at the same time there's hope that makes you not know what you actually should do with your time left. The pain is one thing, but it's everything else that affects your emotional and mental state from an existential point of view that wrecks me at least. It seems we're right on the cusp of great medical science. I just wish I'd been diagnosed a few years later, hah. But also it seems we still have a lot further to go. Hopefully I'll be one of the lucky ones. At this point I'm only hoping I can have a few more years. At 35, as a person that has always been working toward longer term goals and putting off fun for that, it's like I haven't had a chance to really live yet.

What does ALK+ get its energy from? Either glucose or glutamine, or both, or only glutamine? Does anyone know?

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I’m viewing in sequential order. I learned of the channel from The Alkies on FB. These videos are absolutely awesome!!! Thanks for the hard work!!!! It’s well put together