Non-Small Cell Lung Cancer

How can positive thinking and exercise help during cancer treatment?

hi every one warming ip in east coast . went for a dlow refreshing 7000 step walk filling with positive thoughts my med school days on India courting my athlete wife, good times with 2 6 month old grand kids. listening to some abba songs. 3 miles went fast. Iwas able to see 20 patients. slowly winding down and thanking God! stay positive. your brain is like your Pet puppy . you can tame it to your liking . no negative thoughts when you are alone… keep up the fight there is ton of research going on. NSCLC will become in a few years a chronic disease like Diabetes. love you all Ramesh

How do you find strength to keep helping others while fighting cancer?

covid years particularly very difficult to schedule scans can have follow up appointments before the vaccines came along I decided to wear full PPE and do home visits on homebound elderly patients with Covid I also did WhatsApp consultations for patience in India from my state I lost many relatives and my wife’s sister who was a journalist. Luckily my wife’s dementia had an advanced and she did not know her sister passed away. I spoke to her even when she was in ICU in India and she waved me goodbye before she expired. I lost approximately 250 of my geriatric patients whom I have cared for for more than 10 to 20 years. This gave me more resolved to fight as I used to call homebound patients by rotation every day to make sure they were doing well or just give them a emotional support. In 2022 I had three brain metastasis treated with CyberKnife radiation In 2024 had three other side sides in the brain CyberKnife radiation. I had no evidence of any other disease apart from the brain metastasis. So I have stayed on gilotrif ATKI inhibitor immunotherapy one pill day period this is my eight year and five months on first line therapy. I still try and exercise 3 to 4 times a week and I work 16 hours a day and when not working I’m running errands to grocery stores collecting medications for my mother and hunting for whole grain food. I allotted want one hour a week to play the victim card and feel sorry for myself and I spend this time looking at old photographs of my family and my dear wife who was a physician and spent most of her time in a homeless shelters preparing food or filling older patients to chemotherapy and doctors appointments in addition to working in my practice about 10 hours a week. She guides me every day to look beyond myself to be a beacon of hope for so many others who may feel helpless. Unique disease which hates you in the prime of your life because 50s are the time when your immune system is not as strong as it used to be and the regular environmental toxins with your body was able to take care of is now overpowering your immune system to fight it only medications cannot do it your willpower your positive state of mind and pushing yourself even when every muscle in your body aches is the key luckily I have a purpose which is to take care of my mother until she passes away as she has all the mental faculties find was a source of inspiration navigating the last days of my wife illness. all of us has seen ourselves the resolve to live, willingness to fight, give a lending hand to someone in despair. I wish you all the strength and the faith to fight this horrible disease. With love Ramesh

How do online cancer forums help you find strength and hope?

Very grateful to Dr. Ramesh posting. Forums such as this site helps with providing extra needed support in navigating through our cancer journey. It gives me inspiration and courage to keep understanding and finding options and treatment for this disease. Thank you for posting about personal experiences. I find having faith and believing in God helps through the darkest times. Stay strong. Best wishes.

9-year stage 4 lung cancer survivor seeking to help others?

Hi winners, I am a physician and a patient diagnosed with stage four non-small cell lung cancer with PDL one positive and EGF for positive with no specific mutations I went through five courses of chemotherapy which consisted of carboplatin,premextred and pembroluzimab… followed by afatinib I had brain metastasis on and off has had three CyberKnife treatments to minor increase in nodules with no evidence of new disease. initial diagnosis was made with a malignant plural effusion with a drainage of 4 L of fluid I lost two days of work and now I work 14 hours a week my specialty is geriatrics and Wound Care. In addition to being a patient I was a caregiver for my wife for 10 years after the diagnosis who died of frontal temporal dementia she was also a physician Now I am a caregiver for me 101 year-old mother at home with the help of some dedicated caregivers some of them were colleagues at my work. I’m still on first line therapy. I used to be an active blogger in inspire.com with a lung cancer Association but lost touch three years ago. My group no longer exist as most of the people have passed on Not many studies are around for nine years survivors with stage four disease and first line therapy. The road has not been smooth at times rocky with periods of elation, despair mixed with anger,acceptance, and unshakable faith andpositivity. Hopefully I can help some and learn from some period Bless you all Ramesh

How do I find clinical trials for stage 3b NSCLC recurrence?

Hello and happy holidays to one and all! All indications are that my NSCLC, stage 3b, is becoming active again. I'm scheduled for a PET scan on Jan 14 for clarification. In the meantime, I'm looking for clinical trials. If anyone has any info at all regarding this topic, please post as much info as you can. Thank you very kindly in advance for any contribution!

What treatment options work for K-ras G13C lung cancer mutation?

Hello, I was diagnosed with lung cancer T2bN2Mx in June 2024. I have K-ras G 13C mutation. I'm finding that to mean there's very few treatment options. Initially I was on carboplatin/pemetrexed/pembrolizumab. I developed a very serious toxic reaction that blistered most of my skin. I'm currently taking docetaxel/ramucirum every 3 weeks indefinately. The side effects are so toxic I can't eat or drink for 7-10 days. There's many other side effects as well. I'm hoping to find anyone else that has the K-ras G 13C mutation and what your treatment plan is. Thank you in advance!

Is extreme fatigue and sleeping 14-16 hours normal on pem/pem maintenance?

Have a question for anyone doing the pem/pem maintenance, has anyone been extremely exhausted i mean sleeping 14 to 16 hrs. I can't seem to get any energy and they want me to continue this program for 14 more months. I just dont know if I can keep this up

How do I talk to family about end-of-life with Pancoast tumor?

Hello to the community. I was diagnosed with NSCLC in November 2023. I recently had an MRI done and found out that I have a Pancoast tumor. I had 39 radiation treatments and am now on Keytruda immunotherapy for a total of two years with my last treatment scheduled for Feb. Survival rate for Pancoast tumor is quite bleak. Some of my symptoms now make sense to me. My oncologist continues to tell me that I'm in remission and that I have nothing to worry about. We know our bodies better than anyone and I feel like I'm in the final stages of my life journey. I'm as comfortable with my mortality as anyone can be. I'm struggling with the difficult discussions with my loved ones. They are reluctant to accept my my views of where things are going and prefer to accept the views of my oncologist . When I get to the point where my dignity is gone, I will step into the next journey. Best to all of you and thank you for the support in this forum!

Has anyone tried Zongertinib for NSCLC instead of chemo?

Hi everyone. Was recently diagnosed with Nsclc and already had one chemo infusion which was really bad. Is anyone familiar with new drug Zongertinib? I am going to be taking that now instead of chemotherapy and I was hoping to get some sort of insight about it

What are my options when lung cancer spreads and radiation stops working?

I've been dealing with malignant lung nodules since 2018 which we've treated with radiation. One of the nodules we last radiated was apparently resistant and it's now twice its size and had metastisized to lymph nodes in my chest. I had lung cancer in 2008 and was successfully treated with chemo and radiation and was in remission for 10 years. Going back on chemo this week, and we're waiting on molecular biopsy results to see if I qualify for immunotherapy, as I've been PD-L1 negative in the past. My doctors have told me I'm not a candidate for any more radiation and my lung is too fibrotic for surgery. Very scared about my few options right now.