Mally

Jeff,
Ok, I understand.  I had my whole right lung removed.  More troubling is the lung collapse.  Is it your right lung?  Are you experiencing fluid buildup between your lung and chest wall and is this causing pain.  Most importantly, do your doctors know about these symptoms.
I can't connect headaches with lung cancer save for stress.  I had them after periods of extended stress, like my body was reacting to living without adrenaline.
Stay connected and stay the course.
Tom

Jeff,
Happy you have a quick appointment at the VA.  I assume you are aware of the disability implications of a agent orange related condition.  You should do a little on line research to see if you qualify for a monthly disability check from the VA.
Let is know about the results from your appointment and your treatment plan.  Of course, if you have questions, this is a good place to ask.
Stay the course.
Tom

Dan,
Insights in waiting for a biopsy?  Well you are of course acquainted with waiting for test results during your colorectal treatment.  We informally use the term scanziety (actually most spell it with an "x" in place of the "z" but I coined the "z" definition).
You are right, there is nothing magic about 5 years or what was once commonly referred to as a cure.  Also, I think your doctor's conclusion about the change in size and origin of the lung nodules is correct.  They could be nothing or something or lung cancer but they are not likely colorectal mets. Thankfully, life insurance companies haven't picked up on the fact that cancer frequently recurs after 5 years, at least lung cancer does.  But, the lung cancer medical community now uses the words no evidence of disease or NED to characterize being free of disease.
We have a very helpful resource at the Lungevity webpage: Lung Cancer 101.  This might build insight.  I'd start my reading there and get to know the beast all the while hoping the biopsy shows nothing or something that is not lung cancer.
Stay the course.
Tom

Thanks for the fast response, Tom.  I had actually gotten used to not having "scanziety".  Great term.
NED seems to be the common phraseology, even if it is hard to explain to the general public.  I do appreciate your insights into possible causes of the node growth.  I was convinced it was nothing until I consulted Dr. Google and found the rate in the middle of the typical range for malignancy.  I don't know how/if the can tell if something like this was a met or a new primary if it does turn out to be cancer.
I guess it is just a matter of a week of being scared until I know whether to be really scared or not.

Good Morning!
My father just got diagnosed with Stage IV NSCLC.  We all feel (family and father) got hit by a mack truck with the diagnosis. He was admitted into the hospital with possibly pneumonia and came back Cancer positive.  He had fluid in the lungs that was drained and now he has a catheter to drain his lungs as needed.  He went with the Oncologist and found out that it had spread to his bones, upper abdominal lymph nods and right lung. He also needs to gain some weight because he is smaller built. 
He will start Chemo (Carboplatin & Paclitaxel) in May.   Has anyone had experience with these two medicines?  What can I expect?  What kind of foods should be avoided?  What would be great food to eat? I have been googling a lot but figured I would come to you all and see if you had any suggestions.  Any information you are willing to share I will be eternally grateful for.  I will gladly inform you of more info if needed to help answer my questions.  
I am thankful for groups like this.

Randa,
Welcome here.  On the whole, I'm sure you'd rather be on a more entertaining website but given the circumstances, you are in the right place.
Your dad has Stage IV lung cancer but you did not reveal what type of non-small lung cancer.  There are three common types: adenocarcinoma, squamous cell and large cell. Revealing his type may allow us to provide more focused answers to your questions.
I had 18 infusions (3 different treatment cycles -- 6 infusions each) of taxol and carboplatin (Paclitaxel is the brand name of taxol), so I had the same stuff as your dad. Each cycle successfully knocked back my cancer but lung cancer is persistent.  So you should expect good results but be prepared for additional treatment.  Here is a summary of suggestions I wrote some years ago about treatment and preparation.  Steps three through ten may be of interest.  Oh on survival statistics, I'd stay away from them.  If you feel the need to explore statistics, read this first.
I had trouble maintaining my weight also but fortunately, my wife is a dietitian.  So calories were the order of the day and her best delivery method was ice cream -- oreo, rocky road, packed with calories!  Part of his chemotherapy routine may involve taking oral steroids prior to each infusion.  These made me hungry enough to eat everything in the house the day of and the day after infusion.  Be careful to check with his doctor if contemplating starting him on a course of nutritional supplements.  Some of these may adversely affect his chemotherapy.
More questions?  Ask away!
Stay the course.
Tom 
 

Hi Brenda, welcome back.
So, let's review the bidding.  As I recall, you have a nodule in the right upper lobe of your lung that biopsies as adenocarcinoma.  Is that correct?
Suggestions on helping you quit smoking?  I tried every which way there was and nothing worked for me till I wanted to quit.  Then I found the courage to overcome the withdraw symptoms.  I might reinforce the importance by saying I cannot imagine drawing tobacco smoke into a lung with sutures in it.  If sutures break because of excessive coughing, you'll be in real trouble!  I'd also suggest, since you ask, that there is a vast difference between trying and achieving.  If you want to be a non-smoker, talk and act like a non smoker.
Another thing to think about is the surgeon's view on operating on a current smoker.  My thoracic surgeon would not.  You might have difficulty finding a surgeon who will operate because cigarette smoke is an irritant that will inflame an already inflamed lung and will complicate healing.
I don't want to add to your bundle of nerves, but you have lung cancer and smoking will complicate its treatment.  I wish there was a kinder, gentler way of communicating this information.  There is not and believe I owe you an unfettered understanding of the consequences of continued smoking.
I know you can stop.  Just do it!
Stay the course.
Tom

Thank you all so much for responding. Yes Tom  I do have adenocarcinoma. I now have apt with surgeon May 11. They called this morning. At least things seem to be progressing now. I just have a lot of questions about the surgery, which I know can be answered at my appt. I have not been referred to an oncologist as of yet. Do you think this is necessary? Thanks for the support & encouragement!

Brenda,
Referral to an oncologist?  Absolutely!  This is a good time to find one.
You may need post surgical chemotherapy but even if you don't, you'll need to be checked and monitored after surgery to ensure your disease does not return.  A medical oncologist is the medical discipline that does this.
Stay the course.
Tom

Great advice tom and i can relate to both of you because i smoked for almost 30yrs (started very young at 14 ) then many yrs later my mum got adenocarcinoma and had a lobectomy and had many complications including collapsed lung twice and needed a breathing tube put in her throat and put in an induced coma so she wouldnt move and she smoke up to that point ...i gave it up 17 yrs before my diagnosis and i think that helped me heal quickly so do it now and you will benefit from it and its true that you have to want to stop and not because you should ...you can do this we are all behind you

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Hi, Julie,
That sounds like it was quite an ordeal! I'm glad it's over and done with. Please keep us posted on the results.
Lauren
--
Digital Community Manager
LUNGevity Foundation

Hi, Mommy's girl,
Welcome to LCSC. I am sorry that you and your family are going through this. I hope you can connect with many other caregivers and lung cancer patients in this community who can share their personal experiences. I put out a call to respond to your post on some of our other social media private groups. I encouraged anyone with information or experience with Tarceva and kidney dialysis to respond to this thread.
Please let me know if you would like additional resources or information about lung cancer or targeted therapy or if you'd like to learn more about our support programs and I will be happy to help.
Lauren
--
Digital Community Manager
LUNGevity Foundation

I was walking around the hospital unit the day of my VATs lobectomy and released the following day with a portable chest drain. The day after that I was walking around the neighborhood wearing an oversized raincoat to cover the drain tube and bag. I probably could have made it upstairs as soon as I was home, but didn't have to, as my bedroom is on the main floor. The more you move around, the easier your recovery will be. I did sleep and hang out on the couch (futon-type) in the living room- with my wedge pillow -for over a week, because it was less boring there- more natural light and I could see what was going on outdoors. 

Julie,
And Susan: you ladies are marvelous.  I named mine "pain in the butt"!
I was not discharged from the hospital until the physical therapist watched me negotiate a flight of stairs -- in the hospital.  I agree with Bridget and Susan's suggestions and reinforce Bridget's by suggesting you go to a mattress store to audition a wide variety of pillows including the "wedge" incline pillow.  You may even find you need two to get the right angle of elevation.  You will not enjoy sleeping on a flat bed for some time.  (I'd audition the pillows at a mattress shop but buy on-line for better pricing).  (I'd even recommend you get 2 15" wedge pillows because you'll need 1 as a minimum but may find more comfort with two). 
The spirometer workout pre-surgery has an interesting psychological prospective.  Note where you are able to keep the ball before surgery and your goal is to achieve the same elevation after.  When you do, you'll be ready to be discharged.
Expect a day or two of pain but also expect the hospital will administer medications to counter the effects of Larry's resection.  Don't be a hero and refuse the medication.  The pain will diminish every day.  After hospital discharge, bending over will be a challenge as will lifting anything heavy with your left arm.  So be prepared to modify your activities.
Stay the course.
Tom

Hi! I am back here for some help/encouragement. I have had PET scan which showed only the area in right upper lobe. Thank God! I did my pulmonary function test today and received call from pulmonologist. He said he thought my lung function was well enough to do surgery. I will be referred to surgeon. I also have follow up appt. with the pulmonologist that first saw me on Mon. I am getting really nervous now. I am still smoking-trying my best to cut down. Any suggestions on things that will help me quit would be greatly appreciated. Also what questions should I be asking? Just a bundle of nerves right now.

Thank you, Tom. The Oncologist explained it to me as treating each lung as a separate cancer. It's different. Have a brain M.R.I. scheduled end of next week right after start ( or completion-don't know how many treatments I'll have yet) of STBR. P.E.T. in February showed no mets. Praying that's still the case.
Judy M

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Judy,
I've never seen or heard of a two-stage diagnosis.....! This may be more common than I realize given recent treatment advances, your tumors are in close proximity, and there is no distant metastasis.
I will cross my fingers and toes for a good result on Tuesday.
Stay the course.
Tom   

Hi,
I am Gloria. I was diagnosed with stage IV adenocarcinoma nsc lung cancer in December 2015. I am ALK positive. I have been taking alectinib since July 2016. So far the cancer has decreased. The side effects of alectinib have been noteworthy. I would like to hear from other people on this medication. Thanks.

My words of wisdom are be patient with your recovery.  Whether its VATS or traditional lobectomy, take your time and listen to your body.  Definitely make friends with that danged spirometer.  
I'm cracking up that you named your tumor "Larry".  I named mine "Norman" and now that I have a recurrence in my lymph node, we've named it "Larry".  If we don't laugh, we'll cry!
Please keep us posted on your progress and ask if you can think of any more questions. 

I had a VATS lobectomy in November. I wedge pillow was really helpful for my breathing and comfort during my recovery. A 12 inch foam wedge will give you about 45degrees elevation. I recommend it!

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

Prayed for clear report.

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There you go Mally.  You are in the zone now.
Stay the course.
Tom

Thankyou and i guess too many scans can put us at risk of other health problems .so im going to stay positive until i have a reason not to and enjoy the fact that i feel well

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Thankyou and i guess too many scans can put us at risk of other health problems .so im going to stay positive until i have a reason not to and enjoy the fact that i feel well

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