jy_gy Posted January 27, 2020 Share Posted January 27, 2020 I'm 31 yo male living in NYC. I was recently diagnosed with metastatic lung cancer. I already underwent 2 craniotomies to remove a larger tumor in my brain. Thankfully, the biopsy revealed that my cancer cells feature an ALK mutation allowing me to pursue targeted therapies; I am currently taking Alectinib and though I haven't had MRI yet to check the state of my tumors, I am already feeling much better and my blood work normalized. Doctors have high hopes that I go into remission but I am nonetheless incredibly anxious of the moment I will develop resistance to Alectinib and then to whatever second and third line drugs. I also need help to learn how to live with cancer when most people with stage IV lung cancer are not in my demographics, Looking forward to meeting wonderful people here:) Have a good day everyone! Link to comment Share on other sites More sharing options...
Rower Michelle Posted January 27, 2020 Share Posted January 27, 2020 Well hello there. Welcome to the Forum. I was also diagnosed with the Stage IV NSCLC in September 2018, a month later the ALK mutation turned up after a second round of testing. I’m a little older (ok more than a little) than you being diagnosed as a healthy athlete (rower) at the age of 51. I was born and raised in Jersey, now live in KC, still a Giants and Yankee fan. First of all you are not alone. There is a vibrant ALK Community on Facebook (I’m not on it- a long story). Many of the others in the FB group are under 40. As a matter of fact, Lungevity did an analysis last summer and discovered young people with ALK most commonly had brain Mets. You will soon learn there is no correlation to brain Mets and overall survival which is very good news. ALK is often referred to as the “lung cancer lottery” because targeted therapy works very well. I’ve been taking Alectinib for 15 months. I just had my scans last week and it looks like there’s only scar tissue where the tumor was in my right lung. There are some side effects that come with the territory, it’s not unusual to have a dose reduction. This does not make the drug less effective but dialed into your body (one size fits all dosing to start, then adjusted). Alectinib needs to be taken with a high calorie meal and a fat (almonds, walnuts or avocados) 12 hours apart. On www.alkpostive.org there is a cheat sheet for Alectinib. The ALK Community is having the third annual conference with the nations leading ALK experts in Denver 7-31-August 2nd. I hope you can come, I went last year having met the most incredible people (10+ year survivors). Please feel free to ask us anything, nothing is too small. I can say that brighter days are coming, once I got over the shock, I haven’t looked back. It’s one direction, forward every day. I’m sorry you have to be here that shouldn’t happen to a 31 year old. You’ll find a whole new world of support here. Let us know what you need and we can jump in to help. Welcome, Michelle Link to comment Share on other sites More sharing options...
BridgetO Posted January 27, 2020 Share Posted January 27, 2020 Hi JK and welcome! I'm glad you've heard from Michelle already. She is a hero ALK survivor and a fountain of information. Don't let your anxiety about developing resistance keep you from living your life. My lung cancer was 1a, so I didn't need treatment beyond surgery. However, I did have an unrelated cancer that was Stage 3 and very aggressive, so I do have some idiea what you're experiencing. I was NED (no evidence of disease) after some grueling treatment. For the next couple of years, every time I was scheduled for a scan, I was sure that this was the one that was going to show a recurrence. Between scans I was more OK. I tried to live as well as I could each day, and was moderately successful at that. But for quite a while I declined to plan anything more than a couple months away. Now, at almost 9 years out and still NED, I have an airline ticket to London for August and I'm thinking of what I might do next year! Hang in there and enjoy each day. It gets easier. Bridget O Link to comment Share on other sites More sharing options...
LouT Posted January 28, 2020 Share Posted January 28, 2020 JK, Welcome to the forum. We're glad to see you but sorry you need to be here. Michelle and Tom (among others) are our experts in the different types of treatments. For my part I had a lobectomy and so far am NED. So, while I don't have a lot to contribute regarding some of the treatment modes you will need I wanted to welcome you here and stand ready to help wherever I can. Lou Link to comment Share on other sites More sharing options...
jy_gy Posted January 28, 2020 Author Share Posted January 28, 2020 Hi all, Thanks everyone for the kind words and info! I was finally able to join the alkpositive org on FB. Michelle, I will try to attend the conference in Denver this July/August. I will keep you posted JY Link to comment Share on other sites More sharing options...
LUNGevityKristin Posted January 28, 2020 Share Posted January 28, 2020 Welcome! LUNGevity also has an ALK Postive Facebook Group if you would want to connect there: https://www.facebook.com/groups/ALKlung/ and a Young Adult Survivors Group: https://www.facebook.com/groups/YASlung/ Link to comment Share on other sites More sharing options...
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