LUNGevityKristi

Bernadette, 
Welcome to our LUNGevity community! 
With your treatment recently initiated, I hope you're feeling okay and managing any pesky side effects that may arise.  I'd like to connect with you offline to get acquainted and share resources I believe you will find helpful. Check your email and feel free to reply there or call me at 312-639-4529. 
No one has to walk this lung cancer path alone, we are indeed here for you.
kmr

Bernadette, 
Welcome to our LUNGevity community! 
With your treatment recently initiated, I hope you're feeling okay and managing any pesky side effects that may arise.  I'd like to connect with you offline to get acquainted and share resources I believe you will find helpful. Check your email and feel free to reply there or call me at 312-639-4529. 
No one has to walk this lung cancer path alone, we are indeed here for you.
kmr

Teresa T., 
I'm pleased that you have indeed found our LUNGevity community forum and have reached out.
Absolutely NO ONE, has to walk this path alone; our community is here for you today and each day going forward! I'd love to hear from you, I can also be reached via phone/text at 312.639.4529.
As Tom mentioned, Angela and I are both Navigators and are available for your support, information sharing and much more. 
Let's connect soon, I look forward to hearing from you. 
kmr  

Teresa T., 
I'm pleased that you have indeed found our LUNGevity community forum and have reached out.
Absolutely NO ONE, has to walk this path alone; our community is here for you today and each day going forward! I'd love to hear from you, I can also be reached via phone/text at 312.639.4529.
As Tom mentioned, Angela and I are both Navigators and are available for your support, information sharing and much more. 
Let's connect soon, I look forward to hearing from you. 
kmr  

Teresa T., 
I'm pleased that you have indeed found our LUNGevity community forum and have reached out.
Absolutely NO ONE, has to walk this path alone; our community is here for you today and each day going forward! I'd love to hear from you, I can also be reached via phone/text at 312.639.4529.
As Tom mentioned, Angela and I are both Navigators and are available for your support, information sharing and much more. 
Let's connect soon, I look forward to hearing from you. 
kmr  

teresa.t,
Please contact our Registered Nurse Navigator Kristi (kgriffith@lungevity.org) and or our Lung Cancer Social Worker Angie (AJames@lungevity.org). Both are members of our Patient Services Department and stand ready to help you deal with our horrible disease.
Stay the course.
Tom

T,
Welcome to our forums.  You're not alone anymore.  We are a group of lung cancer survivors who can understand all that you are going through.  Like you, I lost my mother to lung cancer and was diagnosed with NSCLC myself in 2019.  I had surgery, (lobectomy), and have had clear scans since.  Unlike you my mother had passed away years before my diagnosis.  So, while my fear, disbelief, and loneliness were much like yours I didn't have both tragedies so close together.  I can tell you that even after my initial scans I was still scared and worried each and everyday about a recurrence and I was losing the joy of living.  With the support of the great folks on these forums I came to realize that, there are many survivors out there and while this is still a deadly disease it was no longer the automatic death sentence that it once was.  I also realized that I could choose to live or that my survival could just be a depressing, lonely time.  So many here cherished each day of survival that I chose to follow them and live, determined to use my life dedicated to others in service.  I reconnected strongly with my children, dedicated a large amount of time to supporting others with this disease, joined and am a leader in an Alzheimer's Caregiver Support Group (my wife is a sufferer presently in hospice), and I sponsor others in Al Anon.
So, three years after my diagnosis I am still here.  My last scans (August of this year) were stable and NED (No Evidence of Disease) and I'm enjoying my life again.  I share all this with you not to say that this is easy, but with the help of others we who have suffered this disease can come to terms with it so we can enjoy life.  We learn to take care of ourselves (eating, exercising, etc.), connect with others (such as you are doing here), and not be afraid to reach out for help anywhere.  For example, my primary care physician was/is well aware of my disease and the psychological challenges I went through, and she helped me with a short-term medication treatment as well as suggesting I speak to someone for additional insight.  I did both and each step I took put my life into a better focus, restored my psychological well-being and sense of well-being.  You deserve the same.
Last point; I'm aware that LC is a disease of high recurrence and lethality, but right now I am healthy and living a life of purpose with an acceptance of whatever the future may bring, you can have that as well.  Please feel free to ask any questions and also take a look at some of the other information we offer here at Lungevity.  Please take a look at our Lungevity Support Services by clicking here.  Stay with us, join in the conversations, and reach out for the help you deserve.
Lou
 

These definitions were provided by a general medical oncologist who treats most forms of cancer. He cautions that although the terms have distinct meanings, there is overlap.
Cure. Should be reserved for specific diseases where recurrences happen quickly and one can safely say there is a cure. Not useful for diseases like most cancers where recurrences can occur up to 5-10-20 years later.  Mostly applies to non-melanoma skin cancers.  Commonly used by surgeons who don't follow the patient long-term and want the patient to feel good about the surgery. But this pronouncement can be VERY misleading as I have had patients without followup because the surgeon said: "I was cured,” and then suffered a recurrence.  I use it with qualifiers, such as "about 95-percent chance of a cure" if someone is still free of disease at 5 or 10 years in concert with statistical predictions.
5-year survivor. This term is mostly used to describe patients if still free of disease at that time, and often implies a reasonable chance of a cure.  Most commonly used term now and has supplanted the use of term "cure".
No evidence of disease (NED). Describes how things are at a specific time, such as after scan, surgery, re-staging workup, after chemo, or XRT [radiation therapy].  This is a point-specific-term, and is good, but does not guarantee anything long-term.
Remission. Similar to NED, but usually used after someone has had disease treated by XRT or chemotherapy and not just surgery but is a general term. It IMPLIES a complete remission but not always. The disease has disappeared at least for awhile, to exam or testing.
Several sub classes of remission:
Partial remission (PR) meaning at least 50% reduction in the bulk or evidence of the cancer, usually measured by size in mm or cm. Minor remission or minor regression suggesting the same but at least 25% reduction in size/bulk of the cancer and a less useful term. Complete remission (CR) meaning all evidence of cancer gone after some treatment. Once again, usually after XRT or chemotherapy, but not surgery (surgeons usually just say, "I got it all”). Complete pathologic remission (CPR) (also called complete pathologic response) usually implies that the patient received chemo or XRT PRIOR to surgery (neoadjuvant therapy) to reduce the size of the cancer prior to surgery, and in the final surgical specimen NO cancer was found pathologically. Often used for breast cancer patients.  Partial pathologic remission like CPR but with a poorer outcome. Implies the cancer is sensitive to the treatment but not 100-percent, and often implies need for more therapy after the surgery. Stable. Implies the disease has not grown nor appreciably shrunk (due to variance in measurements, this often suggests a single change +/- 10%), and then the trend in change is the most important determinant.  Used to be considered a reason to change therapy, but in some diseases may imply continued survival benefit, and thus no need to change therapy.
Progression. This is the worst outcome suggesting significant growth or continued trend in growth and implies need to change therapy.  If no therapy, then "Best Supportive Care" (BSC) like Hospice or comfort measures.
There are three other terms used for surgery results: R0, R1, and R2.  These describe visual and pathologic review of the resected cancer specimen.  
R0 implies all cancer removed. No obvious visually or microscopically identified cancer seen. This is the best result after surgery. R1 implies no visual cancer seen, but microscopically tumor can be seen at the margin of resection and suggests some tumor left behind. Likely needs additional resection, or if not feasible, XRT or chemotherapy afterwards to treat the area. R2 implies visual tumor left (macroscopic) and means the same as R1 but a less successful outcome ("I had to leave some tumor behind, it was attached to an artery or major vein, etc").

Mindful Mondays: 12 pm ET | 11 am CT | 9 am PT (4-week series with Ben Garcia starting 10/17/2022)
For patients/survivors, caregivers, family & friends

Start your week off with mindful meditation. Learn how mindfulness can help you feel calmer, less stressed, and more focused.
Register in advance for this meeting. https://us06web.zoom.us/meeting/register/tZUrdu6hpj8qHdensea1HxB37OQi3e2mlJz-
After registering, you will receive a confirmation email containing information about joining the meeting.

Join us today for the KRAS and Small Cell Lung Cancer virtual meetups! These meetups happen the 3rd Wednesday of each month. More information and register here: https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups
KRAS – 3rd Wednesday 12 pm ET / 11 am CT / 9 am PT
SCLC – 3rd Wednesday 3 pm ET / 2 pm CT / 12 pm PT

Join us tomorrow for the No Mutation virtual meetup! This meetup happens the 2nd Wednesday of each month. More information and register here:
https://www.lungevity.org/for-patients-caregivers/support-services/virtual-meetups
 
Make sure you check out our calendar so you can start saving the dates for important events like virtual meetups, #ILCSC22, and more. All you need to know here: https://bit.ly/3nnMS9d

We all know it’s important to make time for self-care. But do you worry that massage might be unsafe for cancer patients? Be sure to save the date for next Tuesday’s (July 19th, 12 pm ET | 11 am CT | 9 am PT) virtual meetup where special guest Jonatha Wright, Licensed Massage Therapist and Certified Lymphedema Therapist, will get hands-on about the many benefits of oncology massage for lung cancer care.
Virtual meetups are FREE to attend but do require advance registration. Sign up here and make time for yourself: https://us06web.zoom.us/meeting/register/tZUqceGvqj0pGtHDC_OJD-PrFGmQ2AY6MniJ