ViviAnn

Great shirt and wonderful smile.  I admire you, you have such a great attitude.  
ViviAnn

Welcome,
i am just amazed that she had 47 treatments.  My husband participated in a clinical trial for Bristol Myers Squibb that used Nivolumab in combo with Ipilumab prior to approval.  He only had 11 treatments before progression.  He must not of had as many side effects because he did not receive the treatment as long.  They did caution us that it could attack other good parts of your body.  He had neuropathy, fever, rashes and is on Thyroid replacement therapy as a direct result of it.  It sounds as if you are doing as much as you can to help your Mom.  Your an amazing daughter and I'm sure she knows and appreciates you very much.  
Sorry I'm not much help since our experience was much shorter.
Hope someone else can chime in with more info.  
Don't forget to take care of yourself also.  I know it's hard to think about yourself during all this but you must in order to stay strong for her.
ViviAnn

Thank you so much to everyone. I can't even begin to say how thankful I am to come here & have this support for her. 
 
I do do know they gave her 2 Rimicade treatments while she's been here to help reverse the side effects, but it's too soon to know if they have worked in full. 
 
On another better note, she got off her ventilator this morning and is on high flow oxygen at 10LPM & her O2 saturations are great so far! Her left lung completely re-inflated.....I am in awwhhh and this is truly a miracle I believe.... 
 
if if I can help anyone about Opdivo, due to my mom having 47 treatments of it; I would be more than happy to. I do know she had two small tumors on her right lung that had no radiation and one large tumor on her left lung that was radiated. Then she had 47 fusions of Opdivo. After Opdivo, her large tumor "turned into scar tissue" & shrunk the two smaller ones some.

Thank you all so very much for the warm, supportive welcome.  What a long week last week became.  Stayed with my daughter so I wouldn't be alone during the day and she could take me to my appointments.  Forgot to grab my laptop when I went out the door.  My husband works long hours and is struggling so much with his emotions and not being able to be with me during all this.  Had to reassure him that I wouldn't be able to get this treatment if not for him and all his hard work.  
I had my first cycle of chemo and my first week of radiation.  Did well on the first day, but wow, did Day 2 wipe me out.  Day 3 wasn't too bad, except that's when my taste buds changed.   I'm doing four 3-day cycles of Cisplatin/Etoposide and at least 30 days of radiation.  The MRI came back clean, as well.  I am def. limited stage at this point.  I felt like I hit the lottery when my oncologist told me the only thing in my head was my brain, lol.  
Love that shirt, Susan.  My daughter chopped off my ponytail, but then my kids said I should leave my hair short for a week because it's been so long since they've seen me with hair that short.  I left it, but it's going bye-bye tomorrow.  Bed head all day isn't a good look for me.  My youngest still shaved his head in support.  
I'm just so thankful for all the support here, and that I found this site, but wish so badly that no one needed a place like this.
This new diagnosis and knowledge is the scariest place I've ever been.  

Great shirt and wonderful smile.  I admire you, you have such a great attitude.  
ViviAnn

Great shirt and wonderful smile.  I admire you, you have such a great attitude.  
ViviAnn

Daughter,
I would say the objective of second-line treatment is to achieve a reduction or elimination of tumor or tumors.  You are correct, there will likely be an in-process scan about midway through and then decisions on continuing or changing therapy.  
Your dad will need his family to close ranks around him.  Lung cancer treatment is not easy, especially the daily treatment like your dad will endure.  My view, past relationships are immaterial.  I would not have made it through my treatment without my wife and daughter.  Their contribution was immeasurable. I am quite sure your dad will appreciate your engagement.
By all means, pick our brains.
Stay the course.
Tom

Great shirt and wonderful smile.  I admire you, you have such a great attitude.  
ViviAnn

I made it 9 months after my treatment before a recurrence was found earlier this year.  I had one misbehaving lymph node near my aortic arch so it couldn't be surgically removed.  Between March 21st and July 14th, I had a biopsy, 30 rounds of radiation, 8 rounds of chemo, and lost all of my hair.  But, it was worth it because I received my CT results today and I'm NED!!  I'll have a PET scan in about 8 weeks just to ease Super Doc's mind and, if all clear, I'll resume my 90 day scan cycle.  
As always, I'm eternally grateful for the friends and resources available on this site.  
 

Sherry,
Welcome here. Breaking down, emotionally numb and lots of information to digest, we understand completely and absolutely.  Lung cancer almost always presents as a surprise with nasty looming consequences.
It sounds like you have a competent and responsive treatment team from your description and sequence of tests so I'll not dwell on those details.  Let's try and refocus.  I am indeed fortunate to have survived thirteen and a half years after diagnosis with NSCLC and my treatments (many failures) including: three thoracic surgeries, four tracheal stent procedures, eighteen infusions of taxol and carboplatin and conventional and stereotactic body radiation therapy. I averaged 18 weeks of treatment and 24 weeks of no treatment for almost four years. During the 24 week periods of no evidence of disease (NED) or questionable evidence of disease, I fretted, fussed, and fumed.  That was a vast mistake.  I should have been living.  
Your course of treatment will have two objectives: eliminate your cancer and extend your life.  At this juncture, both outcomes are possible, no more than possible, probable.  Highly probable, given the reading I'm doing on advances in immunotherapy and radiation therapy for small cell lung cancer.  So, don't do what I did. Enjoy your life extension. 
There is so much about lung cancer that you cannot influence or control, but you can decide to not let lung cancer ruin your life. That is well within your power and capability.  Here, read this, then re-watch the movie. Then, buy some truck tire inner tubes, inflate, and float the Redstone Creek.  I had a blast floating that creek as a college student during a fraternity house swap week in the late 60s.  With all the emphasis on cleaning up waterways, it must indeed be a very pleasurable activity these days.  I know West Virginia, a couple of driving hours south of you, has wonderful rivers to float.
Questions?  Of course, this is the place to ask and more than likely, we'll have answers.  But your life is your thing, so go make that happen during treatment and after.
Stay the course.
Tom 

Isn't the shirt great?  Got lots of smiles from my fellow baldies at the oncology center.

Hi, ViviAnn.  We're practically neighbors - I live in NRH.  I didn't have any same-day or immediate side effects due to the steroids provided pre-treatment and the days after.  But I found after my first full dose of taxol that my side effects kicked in as soon as the steroids were out of my system.  As for hair loss, I didn't lose it last year but have lost it this year.  It started slowly with my 6 "light" doses of taxol, but within 14 days of my first full dose, my hair was falling out in huge clumps.  I gave in and shaved it.  
The docs can give us their best estimate on side effects but we all tolerate the treatments differently.  I have a friend who took cisplatin and it caused him to lose his hair, but when I took it, it didn't affect my hair at all.
Hope your husband feels better soon. 

Sorry just now saw your post.  I don't remember if my husband had edema with the Alimta.  Dexamethasone pretreatment may be contributing and if your diabetic it only makes it worse.  Get some support hose to wear around the house at least.  They do help, and  elevate your legs when you can when they are swollen.   My husband had terrible swelling when he was on Gemzar.  When he got off the steroids he lost weight.
Hope this helps some.  Hang in there.
ViviAnn

Sorry just now saw your post.  I don't remember if my husband had edema with the Alimta.  Dexamethasone pretreatment may be contributing and if your diabetic it only makes it worse.  Get some support hose to wear around the house at least.  They do help, and  elevate your legs when you can when they are swollen.   My husband had terrible swelling when he was on Gemzar.  When he got off the steroids he lost weight.
Hope this helps some.  Hang in there.
ViviAnn

I do believe that Taxol was formulated by the devil's pharmacist!  I had six "light" rounds of Taxol and Carboplatin during radiation in April and May, and I've had two additional full-strength doses of chemo since mid-June.  I'm not giving up, but after these last two rounds of chemo, I certainly understand why people suspend or quit treatment.  
Super Doc warned me that it would be bad, but he said it wouldn't be as bad as last year's cisplatin/alimta combo.   I love Super Doc but he lies!  Taxol brought some of the usual side effects (fatigue, neuropathy, tinnitus) but it also brought total hair loss, insomnia, GI issues, steroid bloat, weight gain (!!) and a couple of others.  It has just about wiped me out mentally and physically, and that's tough for me to admit.  I know that there are others who have fared so much worse and I try to always keep that in mind.  That said, I'm finished with chemo and will scan again in a couple of weeks.  Ready for another reprieve from treatment and resuming life 90 days at a time between scans.
 

Welcome K
Glad you found us.  I was 50 yrs old when I was diagnosed with lung cancer.  I was Stage 3B .  I started with 2 chemo drugs and radiation immediately. 
It sounds like they know you have Adenocarcinoma but you do not mention that you have a plan-- of care set up yet.  I hope they start some treatment soon !
MD Anderson I hear is a good treatment center. 
I really do not think there are any natural drugs that are going to make a difference .  The cure drugs can be tuff but there are meds they can give to to lessen the
side affects as nausea etc.  Please let us know how you are doing and what the plan will be.  We have been through this and really want to help you.
 
Donna G

I am 56 years old a 10yr cigarette free women, who was just rejoicing recently in September 2016 and being cancer free, from a kidney cancer (low grade non invasive) when May 24 I felt a lump in my neck, I started taking medical mushrooms Coq 10, Vit- D3  Curumin, wheat grass...  extra.. New to Texas had no doctor, found one and then learnt end of June I have metastatic adeno carcinoma of the lung that has spread to the lymph node.No symptoms at all. found my way to MD Anderson and just learnt it could be stage 3 or 4 . I will learn next week what stage. I understand 57 % of people are right where I am...   I am a very positive person and enjoy a good laugh.. I am married and have three grown children, 3 step children and 18 grandchildren and one great grandson.  Love to garden, herbs make my own medicines, tinctures and salves. Love to cook.I am Canadian my husband is Finnish and we both speak Swedish. We are alone in the USA.  Any insight to this horrible sickness about drugs to stay away from, or info on Natural meds I am all ears. Thank you I look forward to hearing good news...

Seconding everything Tom said! So very sorry your dad had this complication but grateful that his surgeon was so sharp and observative.

With your family history of heart disease you know that your dad can enjoy many more years of productive life with great quality following that bypass. As awful as this is, it's a mixed blessing. Lung cancer rarely manifests symptoms until it has invaded other organs. This diagnosis comes at a time that it can be cured.



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Welcome Samantha,
I know of a lot of surprise diagnosis, but during a quadruple bypass? That is a first for me.  I can understand your being unnerved. 
You are right. He'll need to recover from the trauma of heart surgery before a PET is effective, so staging the body will need to wait.  Hopefully, your dad's 1 cm nodule was the extent of his cancer and surgery is curative.  
Advice?  Your marathon analogy is correct.  You'll need to get used to waiting, first for his surgical recovery, then for scan appointments, and then for results.  Waiting was hard for me and when coupled with uncertainty of outcomes, my treatment experience became a nightmare.  But, I didn't have a place where I could get a patient prospective on my disease. This is your place.
Here is something I wrote a while back that folks still find useful as first line information about lung cancer. That said, at this juncture, your dad has a lot going on heart-wise and I really hope his cancer experience is one and done.
Stay the course.
Tom

Hi. My dad - a long-time endurance athlete and outdoorsman, non smoker, vegetarian, age 72, still working full time as a general dentist - was on a long bike ride two weeks ago when he had chest pain that sent him to the hospital. Long story short, an angiogram found 6 major blockages and he had a quadruple bypass the next morning. We were all flabbergasted as he's so healthy, but heart disease runs in his family and his sister had the same procedure about 15 yrs ago. Anyway, while the cardiothoracic surgeon was performing the surgery, he found and fully removed a 1 cm nodule on my dad's lung, and the pathology came back as a stage 1a adenocarcinoma (with clean margins). Can you imagine laying there recovering from major open heart surgery after a heart attack and then getting that news?? He had an MRI of his brain at the hospital which came back clear, but he can't have a PET scan for a few weeks as his chest has to heal. I am not positive but I don't believe the cancer can be fully staged until he's had the scan to check for any other potential incidents? We're all looking at this as a lucky(ish) accident as the cancer never would have been detected at this point had he not had a surgeon literally looking at his lungs, and we're hopeful that the scans come back clean, but it's just a lot to take in. He's recovering at my house and eating an organic, plant based diet, getting lots of love and support from friends and family, but we're all scared (although optimistic and upbeat). We have cardiac rehab starting soon and then have to get started with the oncologist...I know this is a marathon not a sprint and we've barely begun...just looking for a community to hear our story and a safe place for me to unload. Any and all advice and/or words of encouragement are welcome. Thanks for reading!!

Michelle,
I spent too long in shock, gloom and doom. My husband is a 3 year survivor with stage 4 nsclc adenocarcinoma, diagnosed July 2014 while on vacation. Don't waste your and your husbands precious time being gloomy if at all possible, I finally figured out it doesn't help. It only hurts you. Sure, you need to cry some in order to process, just don't stay in a slump. Find someone who will be a good support for you. Find something healthy to keep your mind in a good place, reading, some craft project or exercise. Hang in there. Vivian


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Michelle,
How do I deal with stress?  Well treatment mayhem taught me a lot, and in truth, I didn't learn overnight. 
The short version is reading about Dr. Phil Bearman and his treatment experience on line. He enjoyed every day possible because he decided that he wasn't going to let cancer take over his life. The long version is in my book. 
I just try to live in the day. The only future I think about is a planned vacation. I try and find something I enjoy every day and take time to appreciate the joy. Most days it is little things. I live simply and when something attempts to complicate, I just ignore it. I can't control the outcome of my whole life and I'd fall apart if I tried. I can control the next minute, several hours, and most days, a whole day. So that is where I live, in the day. 
Stay the course. 
Tom

Michelle,
A spouse's lung cancer diagnosis always leaves one feeling hopeless.  The only comfort I can offer is that on this forum, we all understand what you are feeling.  We are all lung cancer survivors or take care of those afflicted. 
I'll confine my remarks to cancer.  I can't begin to offer financial advice; I don't even take my own!  I am assuming the immunotherapy drug Keytruda did not have an effect. Your husband's cancer likely displays the biomarker EGFR because his suggested treatment of Tarceva is an EGFR inhibitor.  Tarceva can work.  Have you contacted Genentech and requested financial assistance in paying for the drug?  Here is the website for financial assistance application.
What should you be doing?  Don't do what I did by wasting valuable life fretting about when I was going to die.  If your husband isn't feeling that bad, do something enjoyable.  Here is an essay I wrote a while back that points to the importance of living.
Welcome here.  Look around at our profiles, and you'll see many of us were in dire straits.  Yet some, not all, found a way out.  I'm hoping you and your husband are among those that find the way out.
Stay the course.
Tom

I deal with stress,by prayer, journaling, art work, and exercise. But from what little I've read about mindfulness most of those things fit the profile
Judy M

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Thanks everyone for the replies. I have a feeling you folks and I are going to get very acquainted going forward.
Dawn and I learned yesterday that she might not be able to go back to work immediately, but her boss (Dr. Shelly) has promised to hold her job for her. I set up a gofundme page for her lost wages only (if there are bigger bills that insurance won't cover, there might be another!). I won't share the link here, you all have been through enough.  
I remember her holding my hand just before my bladder cancer surgery back in 2008. I can't compare my run of cancer to hers. I went to Westview twice... cancer gone. However, the look in her eyes during those visits and the ones following can't have been any different than the way I look at her now. She's the center of my universe. I will find the strength to dig into this and help her go on. I'll lean on you guys a bit in the process and I encourage you to dump on me when you need it.
Maybe she's coming home today. I'm taking clean clothes to Franciscan just in case. She was taken to the hospital in her laying about attire; a too-big t-shirt a pair of sweatpants that have seen so many better days. That woman does love to recline, covered in cats and stared at by an adoring hound. (I myself have been exiled to the loveseat by the animals. That will change.)  
We have a battle cry. It is based on the notion that everyone dies, but Dawn? NOT TODAY!