LaurenH

The Lung Cancer Support Community (LCSC) is the largest online lung cancer support network with over 11,000 members. LCSC members are people living with lung cancer, caregivers, medical and health professionals, and advocates, who are unified in our common goal to improve survivorship.
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There are 27 forums with topics ranging from Survivor Stories to News and Advocacy to Living Well with lung cancer. Each forum has multiple discussion boards where you can post questions and thoughts that you’d like to share with the community. Or you can weigh in on discussions that other members have posted about topics that are relevant and interesting to you.
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In this section, users can create personal blogs to tell personal stories, share news, and give commentary on current lung cancer topics. If you enjoy a particular blog, you can follow it by clicking the Follow button in the top right corner of the page.
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Hi, Katum31,
Welcome to LCSC. My name is Lauren and I'm the Digital Community Manager for LUNGevity Foundation.
I'm glad to see that you've already connected with a few of our members. This community is a great place to find information and support. Please feel free to explore the message boards and blogs, ask questions, and join the ongoing conversations.
In addition to these forums, LUNGevity also has a robust Lung Cancer 101 website, free patient educational materials, a Survivor and Caregiver Resource Center, peer-to-peer support programs,  a toll-free Lung Cancer Helpline, survivorship conferences, and lunch and learn events. You can explore more here: https://lungevity.org/for-patients-caregivers
Please let me know if you'd like any additional information about LUNGevity's Support & Survivorship Programs.
We are here for you!
With gratitude,
Lauren
--
Lauren Humphries
Digital Community Manager
LUNGevity Foundation

Hi there, and welcome.
I'm sorry about your mom's diagnosis.  Unfortunately, being "healthy" doesn't prevent a person from developing lung cancer, but it really does provide an advantage when it comes to fighting it.  It's great that she came through the brain surgery so well.  
We have quite a few members here who have long-term survival after a Stage IV diagnosis, so there's plenty of reason to hope.  Others here will have more input on the chemo/immunotherapy/clinical trials issues--I was one of the lucky Stage I people, so surgery is the only treatment I have personal experience with.  But the others will be along soon.
Glad you found us--this is a great place for information and support.

Faye,
Tom and Susan are right. No one deserves cancer. And anyone with lung cancer deserves to be treated with compassion, not callousness. LCSC is a place where you can find support and understanding.
At LUNGevity, we are working very hard to end the stigma and help secure an investment in research that matches the impact of this terrible disease. Thank you for sharing your story and being part of this community.
We are here for you.
Lauren
--
Digital Community Manager
LUNGevity Foundation

That’s great news about your results, Kleo! We’re sorry you had to go through such a traumatic experience though! Thank you for sharing your good news. We hope you have a very Happy New Year!
With gratitude,
Lauren
—
Digital Community Manager
LUNGevity Foundation

You are not alone at all. It is my honour to be here for you in anyway like many here are for me. Together we can figure things out. We all together make a winning team. Hope all is well today. Glad we are on the same team. I hate loosing and think we got the winning team here. Hugs my new friend. 

A lot of people have stents these days. I have worked as a paramedic for 20 yrs. It is nerve racking to be waiting for a stent without cancer. I can only imagine your fears with it all added together. That's normal and I think you are doing good. Sounds like they are on top of things. I think you are right by taking one step at a time. After the stent then worry about the next step. You will stronger after recovery from stent. I have seen many pts feel so relieved after . I think you are stronger than you think. I hear some great advice being given too. Take our strength and prayers with our love and slowly walk through this. You got this you know. 

Helen,
Keep things simple: stent first, lung cancer second. 
Take care of yourself. Talk to medical professionals about depression. 
I assume you have adenocarcinoma. Tarceva is very effective for those with the right markers. I took it in concert with my Taxol and Carboplatin chemotherapy in 2005. But when I took it, doctors didn’t realize it only worked for adenocarcinoma. My NSCLC is Squamous cell. At the time, the script price was $3,000 per month. I managed both the cost and side effects (not pleasant). I knew a lady who took Tarceva for 10 years and it stopped her lung cancer.  So, when it works, it works well. 
Email the pharma company. There is a link on the website. You’ll find they will take into account your financial circumstances. 
So stent, mental health and lung cancer in that order. You’ll get through this. 
Stay the course. 
Tom

Hi, Helen,
I'm glad that you've connected with some of our members. If you have questions or would like information about lung cancer treatment and managing emotional and financial challenges, the LUNGevity Lung Cancer Helpline is a fantastic resource. The Helpline offers toll-free, personalized support from oncology social workers. You can receive referrals to financial assistance resources for needs including pain medication, homecare, childcare, medical supplies, transportation for treatment, and copayment assistance. The number is 844-360-LUNG (5864), Monday through Thursday, 10:00 am to 6:00 pm, and Friday, 10:00 am to 5:00 pm Eastern time.
I'm also happy to provide you with information about LUNGevity's other patient education and support programs. We are here for you!
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

I'd suggest talking with a social worker or patient advocate or patient navigator at the place where you're receiving care.  They often know about ways to help pay for care.  There's almost always a way to do it.  
Hang in there, but do reach out and let people know who might be able to help.

You durvalumab twins are  a crack-up!

I have officially been infused. LOL I was pretty nervous. I ate a bag of cheesy poofs during the infusion....nervous snacking I guess. I got the orange cheesy powder all over everything. On the blanket and the chair....the nurse. It was even in my hair.🤣  Picture Pigpen from Charlie Brown..only orange. LOL
Infusion was an hour, prep was an hour...so not too bad. Kinda nice to only get ONE bag-o-drugs after all the bags of stuff they had to give with chemo before!
They didn't weigh me prior though. But I'd been weighed the week before. Recommended dosage of this stuff is 10 mg per kg.... I got 475 mg so that sounds about right I guess!
So far so good...🤞
-
 
 
 

Soooo...Bob, not only are we on the same treatment schedule, we are actually getting our infusions on the same days now!?🤣
 

That is good news funny I go for my fourth on October-10 and not in the least nervous. It takes them longer to prepare the drug as they have to weigh you prior to mixing the concoction not many nurses are sure yet of the process.
Bob

Bob I think we are treatment twins here...😁😁 
 
Just got my CT appt for Sept. 26. That puts me at the end of October then for my first treatment. By then you'll have had several treatments so you're gonna be like my Yoda   guide through this stuff! 😏

Kleo
I meet with Oncologist  November- 8th to review the results and make a decision to continue or cancel this treatment I will have had five infusions prior to the scan on October-29. I like quick results one way or another.
Bob

Best of luck to the two of you!  Please keep us posted on how you are making out--you guys are like the intrepid pioneers.  Love your attitudes.  

Hi, Susan, and welcome.
I'm sorry, too, about your diagnosis.  Lung cancer sucks no matter what your age or your smoking history.  Like Bridget, my cancer was caught very early because I was in a screening program for longtime smokers.  I'd given up smoking a year before my diagnosis.
There are, indeed, quite a few long-term survivors here whose cancer was Stage IV.  They will be along shortly.  
Has your tumor been biopsied so you know what type of cancer it is?  Do you know if it's been tested for genetic markers that might make you eligible for targeted therapy?  
Glad you found us--this is a great group of folks and you will find a lot of collective knowledge and support here.

Hi Susan,
welcome here. I too am sorry to hear about your diagnosis.As Steff said, you'll probabably hear from other Stage 4 survivors soon. While I'm unfortunate in having lung cancer, I'm fortunate in having it discovered early, in a scan for something else. Please let us know what questions you have and how we can support you. There is hope, and I think you can find some of it here. There are a lot of new treatments for lung cancer and people are surviving with it and living good lives.
Hang in there,
Bridget O

Hi Susan
I'm very sorry to hear about your diagnosis. A cancer diagnosis is a punch in the gut for everyone involved. So many unanswered questions and so many unknowns.  You are in good company here.  There are many late stage lung cancer survivors who will be introducing themselves soon.  The diagnosis, staging, and other various testing always seem to take forever. That was the worst part in dealing with my mom's diagnosis - the waiting.  I am glad you found this site. The Lungevity site has a lot of helpful, easy-to-read info that most of us here have benefited from.  We are here to help you navigate through this challenging time in your life.  
Take Care,
Steff

Susan,
No I don't follow a special diet now nor did I during treatment, with one exception.  I took a now called targeted therapy drug -- Tarceva --  in combination with Taxol and Carboplatin in my last infusion series (fourth line treatment). Tarceva destroyed my appetite, went to war against my intestines, and I stopped eating.  Luckily, I'm married to a woman who has a masters degree in dietetics.  She found strong mint flavoring and very tart tasting foods are often appealing for people with impaired appetites while in chemo.  So, she made me mint-Oreo cookie, chocolate mint ice cream.  She churned the ice cream and crushed the cookies in a plastic bag and added it to the batter as it solidified.  I lived on ice cream and, strangely cranberry juice for 6 weeks.  
Martha realized I needed calories to recover from the assault my body was taking from chemotherapy.  Now is not the time to start a diet.  My reading suggest that neither sugar nor carbohydrates feeds cancer cells.  A book called The Emperor of All Maladies goes to great length to describe how cancer cells grow and behave metabolically.  They grow rapidly because they are able to influence the body to build new blood vessels to supply them with nutrients and oxygen.  So sugar and carbohydrates don't feed cancer cells, additional blood supply does.  
Lauren's idea about consulting with Savor Health Nutrition is a good one.
Stay the course (and keep eating).
Tom

Hi, Susan,
You are not alone! I am glad to see that you've already connected with several moderators and members on this site. This is a great place to find support, information, and hope! Please continue to post updates and ask questions.
I am happy to provide you with information about LUNGevity's support and education resources. If you have nutrition specific questions, I'd recommend reaching out to the experts at Savor Health, who have partnered with LUNGevity on our Experts Nutrition blog. Here is the link to submit a question: https://lungevity.org/savor-health-nutrition-blog-questions
With gratitude,
Lauren
--
Digital Community Manager
LUNGevity Foundation

Susan,
Welcome here.  I am so sorry I am late responding to your welcome post.  I've had a trying week.  But then, so have you.
You are a 41 year old, never smoker, diagnosed with stage IV, unspecified type, lung cancer with mets to your spine.  Memorial Day weekend was no fun.  So, here is the bottom line up front. You are wondering what are your changes of surviving this mayhem.  I'd say about as good as mine.  I had a horrible journey from diagnoses through no evidence of disease (NED) #1, to NED #2, to NED #3 to NED #4.  Four recurrences from my diagnosis date of February 4, 2003 through my current NED date of March 7, 2007.  If I can live, so can you.  Oh by the way, since you are alive after diagnosis, you are officially a lung cancer survivor!  Welcome to our club!
When things in your life settle down a bit, we'll need to know more information about your lung cancer to help you understand and cope with what is ahead treatment wise.  Lung cancer comes in different in two basic types: small cell, and non small cell.  Non small cell has three major sub types: adenocarcinoma, squamous cell, and large cell.  You can and should read about lung cancer types here.  If you've had your biopsy, the pathology report will identify your type.  Let us know if you are comfortable revealing the information.
If you are stage 4, then surgery is generally not an option.  Fifteen years ago, your situation would have been bleak.  Now however, believe it or not, your treatment and outcome expectations have real success opportunities.  There are so many new treatments from precision radiation to immunotherapy to targeted therapy. (I've hyperlinked each new treatment so you can read about it.) Then we have new clinical trials that are showing very promising results. Once we know your type of cancer, we can suggest trials but to wet your appetite, read this about exciting new trials underway at the National Cancer Institute as but one example. So, there is more than hope for you; there is a meaningful probability of extended life.  How long?  I'm still counting.
You are not alone.  We've been down the path you are on.  We will help you navigate treatment and share our tips and tricks.  
Read into our disease.  Knowledge provides the power to ask the "terribly preceptive questions" of your treatment team.  We are part of your knowledge base.  Ask us questions.  I dare say we have a full spectrum of survivors on board who stand ready to lend their support.
Please try and not consult Dr. Google about survival statistics.  They don't mean much these days because they are based on outdated information and do not reflect the survival impacts of new treatments.  Moreover, they are very weekly constructed statistical data with uncontrolled inputs and unknown outputs. By that I mean that only age, type, stage, date of diagnosis, race and gender are inputs to the national data base for everyone diagnosed.  But no medical history is included so someone could have say heart problems and that symptom would not be included in the data.  Moreover, there is very little information on the cause of death, when death occurs.  A survivor could be hit by a bus and it still counts as a statistical death by lung cancer.  So for a lot of reasons, steer well clear of Dr. Google and his take on survival statistics. If you are interested in understanding the shortfalls of medical statistics, listen to this essay by Dr. Stephen J. Gould.
I know this is a lot to take in but take your time, read in, and ask your questions.
Stay the course.
Tom

OK! Glad to hear your persistence paid off and that you're able to have robotic.  Best of luck!
 
 
 
 
 
 
 
 
 
 
 
 
 
 

Good morning, Bridget.  I've only had one flight since my lobectomy and I didn't incur any pain.  It was a very short flight (about 1.5 hours).  I have a long flight scheduled for May but will be prepared for any issues.  I'm hoping to sleep through the long flight!