Aug 19, 2014|
At 22, Justin had trouble breathing and went to see his doctor who thought it was an asthma flare-up or Lyme disease. He had more testing and his scans showed his lungs were full of cancer - he was sent to Dana-Farber. His tumor was genetically tested and they discovered that he had a mutation in his ALK gene which meant they could give him a more targeted therapy. He enrolled in a clinical trial for the next generation of ALK inhibitors, which was just granted "fast track" approval from the FDA. After 14 weeks on the drug, 98% of his tumors were gone. He now visitys Dana-Farber every three weeks for check-ups, blood work and scans. Justin was on the Radio-Telethon in 2013, and is excited to participate again this year.
Transcript - will not be 100% accurate
Joining us right now Justin Perry 24. He's a lung cancer survivor from wells Maine and -- to go from wells every summer and -- up to Bar Harbor Maine where my dad would do summer research. This even before he got the Dana Farber Cancer Institute. The battle he's been fighting against -- been gone on for years and years and years unfortunately started. Wait too early take us through your story just in and how you've made progress in the road to recovery. Well last time when I was here how about five months and my diagnosis. And down. I was just about cancer free. I was on -- clinical trial called LTK 378. And now is that about a 750. Milligram dose which is actually the highest dose that you could actually try on this trial because. I was stage four and we headed. Get cancer around me as fast as possible so allows one to take on a high dose -- what happened. Well now where seventeen months into it I'm Matt 300 milligrams. And now. They actually only asked me at that I would not last about seven months on this trial before it cancers start to come back. In house and asked to we have now tried different drug nexus struck with some help still. -- that Dana Farber on Friday and they act. Where seventeen months and this we see no sign in his classic coming back whatsoever. You know your long they're freeing clear itself. -- you're right in the book on this drug you're on right now we you know we asked me -- seven months we have. No one else in the clinic seventeen months and this without seeing a sign of cancer panic -- I'm just so happy to be at Dana fire -- a part of you know this trial that is now. It's actually -- fast tracked FDA approval on this drug because they just seeing such great responses it's not cults are -- and -- So called the fact that -- at Dana Farber economic exceeding the standards by over ten months is just. Such an awesome feeling and you know that's why can't it. Progress that was made by people who donated in situations like this year to year. To get it to the point -- kid like you could step in and get that kind of treatment. So quickly -- -- maybe. The donation that you make today doesn't help. A 22 year old but it'll help somebody who's seventeen now that gets a diagnosis like this. Five years from now and maybe helps him in five months as opposed to ten. Exactly you know I always trying to help well whenever -- -- Dana -- I say you know anything you need for me to help out the Jimmy Fund or any. You know Dana Farber that there is you know -- -- be a time when I'm gonna need the next generation Madison I'm gonna need. You know all the latest and the greatest. Fight this cancer off and that's why I'm here today to ask for donations from people you know. We need donations to move -- cancer research and knock cancer out completely and my doctors now in how we need. All the donations because lung cancer is extremely underfunded because of you know all the stereotypes that go along with long time and. There and was an early are you a smoker on the on the all right so of those 125 things that -- drivers and dock to Lleyton mentioned how. -- there is a stigma attached to it that is just smokers but. When you when you -- this. This clinical trial they deserve is their fear element that goes into -- based on the unknown you know and and the how do you handle that. Yeah wall there is huge here. Dana -- really didn't have many patience. On this clinical trial -- I -- ALK positive. Which point counts for about 3% of non small cell lung cancer patients so my treatment options are extremely limited. Thankfully they do how. Really good treatments for me but not many of them out there because only 3% of cancer -- one cancer patients have this type of cancer. So when they offered me LPK 378. -- really -- Wall is gonna happen is that you know if -- upstage phone cancer you want to give this a shot see what happens. And sounds like let's go before you know it sounds good it sounds promising. Let's -- for last year -- house on past five months and do it at a extremely high dose and it was working great -- as -- the side effects now. You know cut that dose. And half and it's still working unbelievable -- Just and first of good to see you again yeah you -- with us last year I do remember. You talk about them just -- in the cave what you think you wanna try this and nice things at the proved correct yeah. You realize that that your coverage and what you decided to do here this clinical trial do you realize what. That how that's gonna affect others yet how like no others are going to be able to read the benefits because of what you tried the -- is that it. Yeah you know when I was first asked that do it they said we don't know that delves. Give people -- you're going to be going into a phase two trial that is actually. Kinda get the notes to give the people so I knew that 750 was probably. More than what people need it so I've actually -- dose reduced over the last twelve months since we met and we actually found. The right -- and hit me but a hole on the back my head. I knew you know I was helping people to get this FDA fast track approval that. If they don't want to Dana Farber had diagnosed with an okay positive one cancer they say hey. Johnston went on it is at 300 milligrams it's worked great for him it's gonna work great for you it's FDA approved. This is the drug don't want they're gonna feel a lot about it on in the -- departments and hey we have a clinical trial we don't really know how much. It give you we don't have a lot of answers let's give it a shot with a -- move forward they've gone for seventeen months like what is with the next year to look like for you. -- actually. Today they don't really well. Doctor Johnson set up voluntarily whatever you do what you're doing right and we're gonna step back and watch how you respond and how you take this in in now. As you said -- right in the book they don't have anyone -- spent on this drug for seventeen months that they don't really have a time line for air. Irsay. Tell me how long it's gonna work because -- I'm the first one that its work this long on select NS stand back and you know hope for the best is. As well as I am and hope that this drug works for eight years to come. And by that time -- all the donations raised for you know the Jimmy Fund and other events there's going to be a next generation drug out there that I'm just gonna. Start taking it -- is this -- stops and you know it's not even and a phase and it is -- your girlfriend here this is my beautiful girl from Michelle I don't know image -- it. Point everywhere right now. This is not ending plastic not to mention me if I'm on a hot hot -- -- -- I was gonna make sure that happens and now. That nonverbal communication has gone on -- but make sure you mention me this year hello youth and go to negative mentioning -- -- When an ambassador he's been in the few moments that we've had him on the air for the Dana Farber Cancer Institute what an ambassador he can be for whatever you're gonna do in life and imagine blow it would be to not have a kid like this in New England right now and what this money has done to prevent that from happening keep in year. I know -- feel the same way Hampshire which. Firsthand perspective of Justin thank you so much for coming on with this and hopefully there are many others that follow in your footsteps -- not only conquer various forms of cancer but also embrace the treatment they've been given. The -- you have. Thank you very much -- guys I appreciate it I look forward to it every AFC in next year's all right sounds good all right.