Meloni

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

I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 

I have a port on my right side, which is the same side as my primary cancer and metastases. A nurse had told me I should talk to the radiologist surgeon who performed the surgery about placement on the left side, since I would be receiving radiation on the right side. The surgeon said this wasn't an issue (although I can't recall why, I'll have to dig for some info), and placed it on the right side anyway. it would be good to chat with the surgeon (is he/she a radiologist surgeon?), and ask them to explain more clearly why the port must be placed on your left side, how effective or ineffective it will be in terms of receiving radiation therapy, and to talk to you more specifically about these risks that concern you. (heads up, I love my port. So much better than a picc or a needle stick.) <3
P.S. It's fantastic that you're advocating for yourself. Good doctors have no problem discussing these details with patients. 

Hello everyone I finally created an account lol. I'm a 2 1/2 year lung cancer survivor and THERE IS HOPE!!! I've been a part of LUNGevity since my lung cancer journey began and it's a great organization.
 
I was diagnosed November 20, 2014 with stage 3B NSCLC adenocarcinoma ALK +, I stood positive, held on to the word of God and fought a brave fight and won!! It wasn't easy but it is POSSIBLE through the word of God! I was on Dr. Phil and shared my story, I've traveled and shared my story, I'm a lung cancer advocate and now I'm an owner of my very own crossfit gym. So remember my lung cancer brothers and sisters there is HOPE!!
 
DON'T EVER GIVE UP!! No matter what they tell you!!
 
Sent from my SAMSUNG-SM-G935A using Tapatalk
 
 

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

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

Good morning fellow travelers. Was listening to a testimony from a cancer survivor some time ago and she said something I've found helpful, so thought I'd share with you guys. She said, "The disease is going to do what the disease is going to do, the doctors are going to do what the doctors are going to do, and God is going to do what God is going to do. All you have to do is mind your joy." Helps to keep me focused when my mind scatters. Also, read that some studies show that vitamin E may help prevent lung fibrosis resulting from radiation. Suppose it can't hurt to try that. Have shot a note to my Oncologist asking if there are any vitamins and minerals I shouldn't take during radiation or chemo. Did set up session for SBRT yesterday. Radiology Oncologist now says they are going to do SBRT on the 2 tumors in my right lung rather than the one in my left. Then radiation/chemo concurrent on the one in left lung. The plan appears to me to have gone through a number of changes, but I'm happy to be getting SBRT on 2 rather than just 1. I have both a Med. Oncologist and a Radiation Oncologist. Not sure they're communication is always the best. Feeling good today and planning to enjoy it. Hope all of you are also.
Judy M
 
Sent from my SAMSUNG-SGH-I337 using Tapatalk
 
 

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

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

Hi Julie in SoCal,
I had an open lobectomy last May, and I think there are some similarities in recovery. 
Spirometer - they will likely give you one prior to surgery. Practice with it before surgery, and IMPORTANTLY, use it regularly post-surgery. 
Walking - your doctor will probably want you to take some slow walks around the hospital once you're out of ICU (ICU is standard after surgery). Do it. Use a walker or wheelchair for support and be kind to yourself. You will fell breathless for awhile until your lungs adjust. Once you get out of hospital, continue with slow walks, but don't go so far out at first that you can't make it back home (my family requested I walk in the backyard unless I had an escort for a few months).
Sleeping and coughing can be tough for awhile. I used pillows to support various parts of my body until I found the sweet spot. I also used a small square pillow that my mother-in-law made me, which I held under my right arm and against my upper right thoracic region for support. Bracing with it while coughing helped control the pain, and using it as support helped whiled I walked distances. 
There are other things, but I'm sure many here have lovely tips! 
 
Mel

Hi Julie in SoCal,
I had an open lobectomy last May, and I think there are some similarities in recovery. 
Spirometer - they will likely give you one prior to surgery. Practice with it before surgery, and IMPORTANTLY, use it regularly post-surgery. 
Walking - your doctor will probably want you to take some slow walks around the hospital once you're out of ICU (ICU is standard after surgery). Do it. Use a walker or wheelchair for support and be kind to yourself. You will fell breathless for awhile until your lungs adjust. Once you get out of hospital, continue with slow walks, but don't go so far out at first that you can't make it back home (my family requested I walk in the backyard unless I had an escort for a few months).
Sleeping and coughing can be tough for awhile. I used pillows to support various parts of my body until I found the sweet spot. I also used a small square pillow that my mother-in-law made me, which I held under my right arm and against my upper right thoracic region for support. Bracing with it while coughing helped control the pain, and using it as support helped whiled I walked distances. 
There are other things, but I'm sure many here have lovely tips! 
 
Mel

My 38 yrs old daughter was just diagnosed 3 weeks ago with stage 111b adenocarcinoma! A week later they found a very small Met in her brain! We go to have that radiated on Monday! Gene study just came back and she has the ARK and the PDL1! After the brain rad she will be starting Crizotinib! On researching this, I was wandering hue expensive this drug is and how good insurance pays for this! This has given us hope and we are anxious to start this! Any insight anyone can give me will be greatly appreciated! So excited about your news!!

I've been away from the message boards for a while and just saw your post. My heart truly goes out to you and I hope you can get some answers soon.  Please let us know how things are going.  Don't forget to take care of yourself too.....that's also very important.  ((hugs))

Meloni, your response was funny and very appreciated. Diet, exercise, sleep, and lack of stress is key to keeping disease away. I hope you join me in changing your diet . The difference in just 30 days for me was amazing. Eating from the earth without processing or chemicals and avoiding red meat will extend your life. Love....

I'm reading about your beautiful diet of nuts, berries and fish while stuffing my face with a Quarter Pounder w/Cheese. 
The others have already provided excellent advice. I'm glad your visit with the pulmonologist is coming up on the 28th. The wait time tests my patience, but my oncologist always reminds me that the window of opportunity will not be lost between now and then.  
Despite the CT, I remain hopeful that your nodule is benign. It does need clinical evaluation, and I'm glad you're seeing this through. God forbid, the nodule needs obliteration, early detection is the key to kicking it in the butt.  You are so very brave to do this. You are not doomed. 
Finally, I hope you don't beat yourself up about your smoking past. Celebration of your non-smoking present sounds a lot more interesting. <3
Meloni
 

Lbelle,
Well it is somewhat settled and that is a good thing. I never had an EBUS procedure. Mine was an old fashioned incision at the base of my throat, but I quickly recovered. From what I've read, EBUS is a piece of cake. 
The special form of anxiety you are feeling anticipating test results is a common lung cancer survivor lament. I was so affected, I even wrote a book about it. 
Keep us in the loop and...
Stay the course.
Tom

Ok, loved this new surgeon, scheduled for robotic lobectomy April 12. Still can't believe I am doing this. Scared to do EBUS for mediastinum biopsy and MRI, more the anxiety of waiting to hear results than anything. 

Isaut,
We were all hoping for a better outcome for your stepfather.  It is fortunate, you are allowed to take a leave of absence to care for him as he experiences this change in life cycle.
Hope is so very important to a lung cancer survivor and to those that care for the survivor.  Often, it is our only reliable treatment method.  So, we invest in hope and it becomes very hard to pair back the investment.  This, and your love, are likely the reasons you are finding difficulty accepting progression and its consequences.  But, there are only two universal and predictable aspects of all life:  birth and death.  
Ensuring a comfortable transition is so very important and I can tell you will excel in this process.
Stay the course.
Tom

It's good to hear back from you. I'm sorry you don't have better news to report. <3 
Happy to hear he is resting, and I hope you can get some rest as well. 

Thank you Meloni, good advice and for sharing your experience. Just the thought of surgery in general horrifies me. I want to be here for my family, and I worry about everything from making it through to potential complications afterwards. All of this is like a terrible dream. Praying and trying to trust Gods plan.

April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
Meloni 
 

April 10th is not far away, and in my experience, they usually schedule surgery very quickly once the consult is completed.
I mentioned on another thread that my VERY talented thoracic surgeon does perform VATS, but had to perform open surgery in my case. I was terrified, but he was honest and forthcoming about the procedure, and I actually recovered and was sent home from the hospital a day earlier than expected. The staff was amazing, professional, and kind. 
IF your 2nd opinion surgeon recommends the same, I assure you the experience is manageable and we can help walk you through it. <3 
Like the others said, it's important to trust your surgeon, whomever you choose. my husband and I were very comfortable with the surgeon and his capabilities. My husband gets a kick out of watching him come out of surgery to chat, because he sees the surgeon is doing what he loves, and God's calling. 
I will ill keep my fingers crossed that your 2nd opinion is able to recommend a VATS!
Meloni 
 

Yes - we brought it up in February and understandably were instructed to keep an eye on his symptoms (at that point weight loss was very minimal and cough was less severe, skin was good). In the four weeks since that appointment, we went on a planned family vacation and upon arriving home Tuesday, I called his family doctor. He was so weak on vacation - we even used a wheelchair. This was a huge change and I know it was a shock for us all. He brought many meals back up on vacation, and I don't know if it was because of vacation, or the coughing, or new nauseousness. He's eating so much less in the last month. My worry is that his last CT scan, in February, was only chest and throat (where his tumours have been) but the last MRI was in August, so we don't know about mets beyond chest and throat right now. There are so many things that could be going on. I don't understand what bloodwork can or cannot show, and frankly, I haven't educated myself to the fullest extent on those details because there is just too much to know. I've left it to the medical professionals to guide us along. 
My plan is to call the oncologist (or have the Family doctor call) after Tuesday's appointment. The oncologist is three hours away but is amazing and I know that they will help how and when they can. I'm delicately insisting that he see his family doctor (until now I've accepted his wishes to only see the oncologist regularly). I am not going to the appointment with him (I've only missed one or two in the last 1.5 years, but I think he needs to do this one on his own). The nurses are good to speak to me afterwards. I spoke to his family nurse earlier today and outlined all of my concerns. I was just notified that they are able to do a chest xray tomorrow and have ordered bloodwork for Monday. He is trying so hard to maintain his daily activities and functions but it is increasingly obvious that this is a struggle. Due to family turmoil, his divorce from my mom, and not having a huge social circle to begin with, he only has a handful of other people and honestly, it will be outside my comfort zone to reach out to them, but I am going to start doing so shortly. He needs visitors and unfortunately, I can't drop everything in the evenings and on the weekends, even though I want to. 
I appreciate the responses SO MUCH. It's nice to know I'm not alone. Thank you. 
 

As follow up, he admitted to me Friday night that he has white stools and dark orange urine. He's had hiccups for days and is still very yellow. Something must be going on with his liver. Helps explain the increased confusion as well, about which he is very defensive. Blood work tomorrow and I'm certain Tuesday the family doctor will be pressing the liver issue. I'll call the oncologist tomorrow morning as well. I am looking at startinf compassionate leave after Easter but will see what the next few days bring.