corinnecasebeer

I am so sorry to hear about your diagnosis. I'm glad you found Lungevity - I didn't find this resource for years! I too was diagnosed at 32, but they thought I was Stage 1 so I had surgery. A year later I was Stage IV, with brain mets.
I highly recommend that you look into get off Xalkori and get on Certinib or Alectinib, since Xalkori doesn't protect the brain and these newer drugs do. I believe (but am not 100%) that if you have brain mets insurance will cover the new ones as a "first line therapy."
Please join us over at ALKies Worldwide FB group! There are many people in your same position who can tell you what their experience was. Hang in there. 
 
Cori 

I am so sorry to hear about your diagnosis. I'm glad you found Lungevity - I didn't find this resource for years! I too was diagnosed at 32, but they thought I was Stage 1 so I had surgery. A year later I was Stage IV, with brain mets.
I highly recommend that you look into get off Xalkori and get on Certinib or Alectinib, since Xalkori doesn't protect the brain and these newer drugs do. I believe (but am not 100%) that if you have brain mets insurance will cover the new ones as a "first line therapy."
Please join us over at ALKies Worldwide FB group! There are many people in your same position who can tell you what their experience was. Hang in there. 
 
Cori 

I am so sorry to hear about your diagnosis. I'm glad you found Lungevity - I didn't find this resource for years! I too was diagnosed at 32, but they thought I was Stage 1 so I had surgery. A year later I was Stage IV, with brain mets.
I highly recommend that you look into get off Xalkori and get on Certinib or Alectinib, since Xalkori doesn't protect the brain and these newer drugs do. I believe (but am not 100%) that if you have brain mets insurance will cover the new ones as a "first line therapy."
Please join us over at ALKies Worldwide FB group! There are many people in your same position who can tell you what their experience was. Hang in there. 
 
Cori 

Hi Dani!  Wow you've come to the right place.  There is a ton of great support on this site.
Also, I would encourage you to friend me on Facebook (Frank Sierawski in Omaha, NE) and I can get you plugged into the Facebook group for ALK+ patients and caregivers (ALKies Worldwide).  There are over 500 people in this *private* FB group now and it's a really great community for sharing treatment information, bouncing ideas and thoughts off others in similar situations, and just a place to release your cancer frustrations where others won't judge!  Also, there are a fairly large number of folks on this site who are also in their 30's who you'll be able to connect with, which is important as well.

Lbelle78, I'm so saddened to hear this news. so many hugs and prayers being sent to you and your family. <3
I tested ALK+ as well, shortly after my lung cancer recurred in January. Now I'm taking Xalkori, one of the targeted drugs they use specifically for ALK+ NSCLC. (my point isn't to talk about myself, but to tell you that, once you have time to digest this incredibly emotional burden that's been thrust upon you, there are several treatments available. Researchers are looking at this mutation, and we are reaping the benefits. <3
I'm happy to hear you will get a 2nd opinion. I hope, if your insurance and finances allow it, that you will consider a specialty center. A doctor who specializes in ALK would be so beneficial, and I'd bet there is some sort of long distance treatment available so you don't have to move (I've heard of some patients having plans written up and sent to their local providers, etc). 
Regarding your oncologist's lack of hope: there is hope. There is so much hope, and so much opportunity for life and love and watching your beloved children grow, and standing by your husband's side as the two of you grow old together. 
I read an article the other day, and linked it below. I had been looking for information on the ALK mutation, and here I happened across the story of a young man who was diagnosed with Stage IV, ALK+ NSLC while in his twenties.
Spoiler alert: There is always hope!
http://www.curetoday.com/publications/cure/2015/lung-2015/hitting-a-target-in-advanced-non-small-cell-lung-cancer?p=1

Linnea, that's so encouraging, thank you. I will definitely be checking you out. I'll read more about your journey.

Thanks for the awesome advice, all great suggestions and we are definitely going to seek another opinion. Appreciate all the support.

I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four.  I know the pain and grief you  your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. 
The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most  mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones?  
Also, I have two recommendations for you. 1)  get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years!   Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge.  Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website.
2) Join the Lungevity ALK and ALKies Worldwide  Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. 
https://www.facebook.com/groups/ALKIESWW/
https://www.facebook.com/groups/ALKlung/

I'm sorry to hear about your diagnosis. I know you worked hard to get the robotic surgery you chose. So now you'll need to work hard to get a second opinion and hang in with treatment. You can do it! There are so many people on this site with Stage 4 who are living good lives; I hope they will inspire you.
 
 

I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four.  I know the pain and grief you  your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. 
The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most  mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones?  
Also, I have two recommendations for you. 1)  get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years!   Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge.  Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website.
2) Join the Lungevity ALK and ALKies Worldwide  Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. 
https://www.facebook.com/groups/ALKIESWW/
https://www.facebook.com/groups/ALKlung/

I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four.  I know the pain and grief you  your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. 
The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most  mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones?  
Also, I have two recommendations for you. 1)  get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years!   Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge.  Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website.
2) Join the Lungevity ALK and ALKies Worldwide  Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. 
https://www.facebook.com/groups/ALKIESWW/
https://www.facebook.com/groups/ALKlung/

I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four.  I know the pain and grief you  your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. 
The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most  mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones?  
Also, I have two recommendations for you. 1)  get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years!   Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge.  Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website.
2) Join the Lungevity ALK and ALKies Worldwide  Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. 
https://www.facebook.com/groups/ALKIESWW/
https://www.facebook.com/groups/ALKlung/

I am so sorry to hear this. I was 32 when first diagnosed and 34 when I relapsed at stage four.  I know the pain and grief you  your family feel is indescribable and overwhelming, but I promise you it will get a little better every day. Okay...maybe not every day in the beginning, to be honest. But eventually, it gets better little by little, day by day. 
The only silver-lining I can offer you is that for some reason the ALK rearrangement seems to be "more treatable" than most  mutations. We are less common than a lot of them, and yet we have a ton more drugs than even the really common mutations! And in that way we are lucky. We are the unlucky-lucky ones?  
Also, I have two recommendations for you. 1)  get a second opinion, and maybe even a third. It took me months to do this because I was so overwhelmed, and I regret that decision every day. I personally know someone who is stage four and after chemo was able to have surgery and is now been clear of cancer for four years!   Do not go to a good hospital, go to the best. I again made this mistake, please learn from me. Here are the best, in my opinion (for lung canver): MD Andersen, Massachusetts General - Dr. Alice Shaw, and University of Colorado - Dr Ross Camidge.  Both of these two are ALK experts. If these aren't an option, there are many other wonderful lung cancer hospitals, you can find some recommendations at the Lungevity website and the Bonnie Addario website.
2) Join the Lungevity ALK and ALKies Worldwide  Facebook pages. Here you will not only find support, but advice, help and more information about lung cancer and the ALK mutation than even most doctors know. 
https://www.facebook.com/groups/ALKIESWW/
https://www.facebook.com/groups/ALKlung/

Hi, I am sorry that you have received this devastating news but do know that being ALK positive means that you likely will have multiple treatment options. Also know that lots of us mutants have outlived predictions. I was diagnosed at the age of 45 in 2005---I am ALK+, have been stage IV for most of my journey, and I just marked 12 years since diagnosis. Check out my blog if you'd like more information about living (for a long time!) with ALK+ lung cancer: www.outlivinglungcancer.com  You are not alone. xoxo Linnea

Great! I'll look for you in the groups  I'm going to Hope Summit as well.
Wonderful choice with Alectinib, a lot of people in the ALK-ies group are on it and love it. I'm glad that you are saving some eggs first, my doctors didn't talk to me about this before and I didn't think about it. Keep us posted on your progress! 
-Cori

I'm so glad you found this resource! It took me years! I am 34 and Stage IV, ALK+ as well. I'm so sorry to hear that you have been going through all of this, and that you are now one of us. The "good" news is that things are drastically different for us, even versus a few years ago! There are now 3 Targeted Therapy drugs on the market and 3 in Phase 2/3 trails, and many more in Phase 1. Basically what I'm trying to say is that there is a LOT of hope and life to be lived. PLEASE come find the ALK-I.E.S Worldwide facebook group (and put it in the search bar just like that otherwise it won't come up). It isn't a support group - we only talk about the latest drugs, research and symptom/side effect management. Please join us and put your story on there - you will get TONS of advice and information, especially regarding the therapies you're debating. You will love it  
Wishing you the best, 
-Cori 
PS - a bunch of us, including the "young lung" ones, are going to HOPE Summit. I hope you go! There's a special Facebook group for us youngins, called "young lung support group." It's a great group as well. 

Hey everyone! Wow thanks for the new info, I've gone to both Facebook sites to sign up, guess I'll wait for the admins to let me in. 
I will definitely try to go to the conference, especially since it's not far from me. Would be good for me to get more information than what they taught me in the books.
We decided to go with alectinab, larger target and more brain protective. Will be starting it in about 2-3 weeks, saving some eggs first.
Sydney. 

I'm so glad you found this resource! It took me years! I am 34 and Stage IV, ALK+ as well. I'm so sorry to hear that you have been going through all of this, and that you are now one of us. The "good" news is that things are drastically different for us, even versus a few years ago! There are now 3 Targeted Therapy drugs on the market and 3 in Phase 2/3 trails, and many more in Phase 1. Basically what I'm trying to say is that there is a LOT of hope and life to be lived. PLEASE come find the ALK-I.E.S Worldwide facebook group (and put it in the search bar just like that otherwise it won't come up). It isn't a support group - we only talk about the latest drugs, research and symptom/side effect management. Please join us and put your story on there - you will get TONS of advice and information, especially regarding the therapies you're debating. You will love it  
Wishing you the best, 
-Cori 
PS - a bunch of us, including the "young lung" ones, are going to HOPE Summit. I hope you go! There's a special Facebook group for us youngins, called "young lung support group." It's a great group as well. 

I'm so glad you found this resource! It took me years! I am 34 and Stage IV, ALK+ as well. I'm so sorry to hear that you have been going through all of this, and that you are now one of us. The "good" news is that things are drastically different for us, even versus a few years ago! There are now 3 Targeted Therapy drugs on the market and 3 in Phase 2/3 trails, and many more in Phase 1. Basically what I'm trying to say is that there is a LOT of hope and life to be lived. PLEASE come find the ALK-I.E.S Worldwide facebook group (and put it in the search bar just like that otherwise it won't come up). It isn't a support group - we only talk about the latest drugs, research and symptom/side effect management. Please join us and put your story on there - you will get TONS of advice and information, especially regarding the therapies you're debating. You will love it  
Wishing you the best, 
-Cori 
PS - a bunch of us, including the "young lung" ones, are going to HOPE Summit. I hope you go! There's a special Facebook group for us youngins, called "young lung support group." It's a great group as well. 

Thanks for the encouragement! I have an ALK mutation, which I hear is a good thing. Howard does have a cancer center, but the oncologist there wanted me to get specialized therapy so referred me to Hopkins. So far I think they have been pretty good. We will see I guess.
My oncologist gave me journal articles for alectinib, crizitinib, ceritinib and a new trial for brigatinib. Trying to read through them and decide which I think is best for me. Any suggestions?
Sydney. 

Hi all,
My name is Sydney and I am a 33 year old first year resident in Internal Medicine at Howard University Hospital. I am originally from Jamaica and recently moved to the states to further my career. Last year January, I began having these sticking left sided back pain, but thought it was a recurrence of a muscle strain I had, when I was working out. Couple weeks later, I began having left sided chest tightness, so I went to my hospital and asked a colleague to write up an xray form. It showed a large left lower lobe consolidation, The radiologist brought me into a room and began asking me quite a few questions, about my symptoms, if I was having any weight loss, cough, fever. At that point in time I had none of those, but I was on steroid treatment for really horrible eczema, so they thought it was likely infectious since steroids lower your immune system. I was given antibiotics and a couple months later followed up with a pulmonologist with a repeat cxr still showing the consolidation, which was clearing.
Fast foward to later that year, after I migrated and started working at Howard, I realised that while at work, when they would clean a patient's room with this strong chemical, that i would start wheezing. I am more susceptible to developing asthma, my family is full of it, so i thought that was the case for me. I  decided I would check with a Pulmonologist, but didnt go right away due to the crazy hours at work. In January 2017 I went to the Pulmonologist when I noticed the wheezing to be persistent. Originally I was sent to an allergist, do pulmonary function tests and cxr. I got the cxr done on Jan 25th. It again showed a left lower lobe consolidation, which totally freaked me out because I knew something was wrong. We did a CT scan on the 27th which confirmed my fears, that i had a mass. Due to the fact that I am young, perfectly healthy, have no weight loss, fatigue, or coughing, my pulmonologist tried to convince me that it was likely benign, probably carcinoid. We did a bronchoscopy on Feb 3rd, which showed a very friable mass (worst description ever! From I heard the word I knew it was cancer) and the pathologist in the room stated that the cells looked malignant. Honestly I was just floored. I was the annoying friend that used to scold my friends who smoked, how the hell did I get lung cancer??? So many emotions flowed, I cant even fully express them. We did a PET scan and MRI brain, which were both negative, so we though that we caught it early, and I was referred to a Thoracic surgeon, who deals with a lot of lung cancer at another institution.
The day I met the surgeon, I felt something was wrong. He told me he saw nodes on my CT, which were not mentioned in my PET or Bronchoscopy. We had to repeat the bronch, and get nodal samples. He also said that I had some thickening of the base of my lung, and he wasnt sure if it was just scar tissue from the repeated pneumonia, fluid or cancerous cells, so he wanted to do a pleural biopsy. February 14th, we went in and I did the repeat bronch. Again a pathologist was in the room, and he confirmed that nodes were positive. So now I was looking at stage 3a, which was a dramatic difference from the stage 1 that I thought I was. I was just shocked, annoyed and wondering when would I get a break from this bad news train. We did the pleural biopsy on February 20th, which he said looked great, looked like it was just scar tissue, so I was relieved and thought the train finally stopped. I was referred to an Oncologist
On February 28th, I went to the oncologist, who bless her heart, is young, caring and very specialized in lung cancer. She told me that it was Stage 4, that the pleural biopsy was actually positive. Due to this upgrade in staging, surgery is now not an option, only medications. They had however done genetic studies which showed i have a mutation in the cancer, so I am to start on lifelong targetted therapy. This would have been an easier pill to swallow, but due to toxic effects, I would now not be able to carry my children, and I have none. I have a wonderful partner who has always said he cant wait to see me pregnant with his children, and now that cannot happen. This cancer has changed my life in an instant, my career, my future, just so uncertain.
I refuse for this to end this way, I didnt push myself through all sorts of crap for it to end here. I will fight this, and I will beat this.
I just found this site on a google search, and decided to join. I've spoken to a few cancer patients, I was actually diagnosed when i was on my Oncology rotation, oh the irony! I appreciate the fact that i have found somewhere where people can help me since they have been through it
As my mother always told me "Many extra-ordinary things were done by ordinary people who persevere."
I will persevere.
 

Hi, Sydney,
Welcome to LCSC! Thank you for sharing your story. You seem like an incredibly determined, knowledgeable, and positive person. I'm happy to see that you've jumped right into the discussion forums.
I work for LUNGevity as the Digital Community Manager and as an advocate for my uncle who has Stage IV ALK (he was diagnosed in September 2011 and has had very positive results with both crizotinib and alectinib). LUNGevity has an ALK group on Facebook where you can connect with other people who have the ALK mutation. I will also reach out to some of our members who have ALK and ask them to respond to your questions in this thread.
Since you're in the DC area, if you're interested, we have a national lung cancer survivorship conference coming up at the end of April called HOPE Summit. Several LCSC members are HOPE Summit alumni and many will be joining us this year. I am happy to provide you with more information. Please feel free to message me with additional questions about HOPE Summit or LUNGevity's educational or support resources.
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation