I'm New around here......

[ToniH]

Hi Everyone, I am a newbie around here.  My surgery went well and starting chemo any day now. My lung cancer is stage 3b and I need to talk about it how I feel about cancer and what is going on with my body and inside me, but my family is too scared and doesn't understand why.  Looking for honest open discussion about comes next if the chemo and treatments fail. I am a realist and straight shooter, don't want fluff or rainbows and unicorns. Thanks 

[LouT]

ToniH,

Welcome to the club nobody wants to be a member of.  Sorry you need to be here.  Our group is large and diverse.  You'll find people here who were "never smokers", smokers, those diagnosed at all different stages and many that have had a large breadth of treatments.  So, you can tell us all you want about what you're feeling, going through or just ask any questions you have and you'll find a willing audience and sound advice (when requested).  In the meantime one of our members wrote an excellent piece called, "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find it here.  We look forward to getting to know you and can also assure you that there are a lot of survivors here that will give you hope.

Lou

[Susan Cornett]

Hi Toni. If you feel like it, let us know some details about your chemo. In the meantime, check out this website created and maintained by Cleveland Clinic. It provides info on side effects and options to address them for each type of chemo. I'm also going to give you this tidbit: don't Google statistics. They are crap. They don't take you or your situation into account, nor do they include stats based on latest treatments. There have been so many new treatment options introduced in the last few years. I tell you this as someone who, statistically, shouldn't be here. 

Ask us anything. We are all here for you.

 

[Tom Galli]

Toni,

I'll add my welcome to Lou and Susan.

Nearly 18 years ago, I was diagnosed at Stage 3B. I had pre-surgical chemo-radiation to allow surgery that removed my right lung. Then, I had a multitude of recurrences with unsuccessful treatments until one finally did the trick. I was NED (no evidence of disease) for 16 and a half years; then my medical oncologist pronounced me "cured" in March and promptly retired from practice.

So my straight shooter advice is if I can live, so can you. Your treatment will likely be a slug through side effects that make life difficult. You'll likely need to find a "new normal" after treatment because pulmonary capability and related problems might settle in. But, consider the alternative.

You ask what comes next if treatments fail. They might. They did for me. My doctor kept trying and my wife kept "encouraging" me. Very probably, what comes next after treatment is life. Don't forget to live it.

Stay the course.

Tom

[BridgetO]

Hi Toni and welcome! You've come to the right place for "honest open discussion." Share anything with us; ask us anything. That's what we're here for. Let us know how we can support you.

Bridget O

[ToniH]

21 hours ago, LouT said:

ToniH,

Welcome to the club nobody wants to be a member of.  Sorry you need to be here.  Our group is large and diverse.  You'll find people here who were "never smokers", smokers, those diagnosed at all different stages and many that have had a large breadth of treatments.  So, you can tell us all you want about what you're feeling, going through or just ask any questions you have and you'll find a willing audience and sound advice (when requested).  In the meantime one of our members wrote an excellent piece called, "10 Steps to Surviving Lung Cancer; by a Survivor" and you can find it here.  We look forward to getting to know you and can also assure you that there are a lot of survivors here that will give you hope.

Lou

 

[ToniH]

thanks Lou, not glad to be part of the club but glad I found the support felt like I was drowning 

[Judy M2]

Hi Toni, 2 years ago I was diagnosed at Stage 3b but wasn't a candidate for surgery. I went through chemo (6x carboplatin and taxol) and 30x radiation and afterward started a targeted therapy for my particular genetic mutation. My journey wasn't easy by any means, but I've had No Evidence of Disease (NED) since April 2021. Although I'm not cured, my disease is well under control. 

Did you have biomarker testing to determine whether targeted therapy would commence after chemo? 

The way I see it is that all of the treatments I've been through have worked to date, and I'm grateful to live pain-free one day at a time. 

As to your "what's next" question, new treatments are constantly being developed, so in a couple of years there may be more wonder drugs out there for us. LUNGevity offers lots of online presentations to educate us about new treatments. 

Good luck with chemo. I hope you get a port to make infusions easier. Bring a book, snacks and something to drink, listen to music and definitely bring a blanket. Infusion rooms can be chilly.

[Rower Michelle]

Hello from me too,

This is pretty much a no BS zone- you’ll be able to find what you need here- I want to emphasize Judy’s comment regarding biomarker testing which is critical for Stage IIIb.  It has a lot of different names with the same meaning.   
Often times an immunotherapy called Durvalumab/Imfinzi is recommended.  Before starting any immunotherapy it’s critically important to know if you have a biomarker.  If there is a biomarker than immunotherapy will not work.  There’s a saying “test don’t guess”.  
 

Since 90% of lung cancers are diagnosed at stage IV, it’s a “lucky”’find at stage 3 which is treated with curative intent. It’s also a little rare, depending on where you are treated a second opinion at a major cancer center can be useful. In your area that would be Moffit.  There are other NCIs that specialize in particular biomarkers.   

Welcome to the family!

Michelle
 

[Karen_L]

An excellent source of information is the National Comprehensive Cancer Network https://www.nccn.org/ From their About page:

Quote

The National Comprehensive Cancer Network® (NCCN®) is a not-for-profit alliance of 31 leading cancer centers devoted to patient care, research, and education. NCCN is dedicated to improving and facilitating quality, effective, equitable, and accessible cancer care so all patients can live better lives. Through the leadership and expertise of clinical professionals at NCCN Member Institutions, NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.

World-renowned experts from NCCN Member Institutions diagnose and treat patients with a broad spectrum of cancers and are recognized for dealing with complex, aggressive, or rare cancers. NCCN Member Institutions pioneered the concept of the multidisciplinary team approach to patient care and conduct innovative research that contributes significantly to understanding, diagnosing, and treating cancer. NCCN programs offer access to expert physicians, superior treatment, and quality and safety initiatives that continuously improve the effectiveness and efficiency of cancer care globally.

I particularly appreciate their treatment guidelines for medical professionals and their information for patients. 

There's a lot of crapola running around random sites of the internet lung cancer world. I like this site a lot. And, check your sources, always. If you can stomach peer-reviewed studies, that's your best bet. (You really only have to ready the Intro and Discussion sections of those to get the gist. Ha-- that may be one of the most practical tips I got from grad school.) 

My stage 3A tumor location meant surgery wasn't possible. My docs followed the protocols of the Pacific study, which included the same chemo cocktail you are getting, followed by immunology. The Pacific study immunology was based on Durvalumab. I finished chemo & radiation in May. 

I, too, find myself preoccupied with what comes next if.... I love reading Tom's experience for that reason.

My family is swamped with their feelings about my stupid cancer so I am glad to have a therapist to help with my own. 

Thanks for sharing. 

Karen

 

[ToniH]

Thanks all for the replies.