Hello - new here...
My mother (74) was recently diagnosed with Stage IV NSCLC and begins chemo (Carboplatin + Alimta) on 12/28. She is a non-smoker and the news, information, treatment - all of it!- is overwhelming. Seeing success stories here gives me hope and if anyone feels like sharing, I appreciate hearing from people who know what it's like to live this.
Any advice is welcomed and I am proud of all of you for your strength - you are all Warriors!
AK
Once she gets past the initial chemo and can drop to ‘maintenance’ therapy on Alimta, the treatment is manageable. I was diagnosed April 2015 stage IV NSCLC and am doing great. I’ve had a lot of bumbs in the road, but my cancer is stable. Best wishes to you all. Yes, there are a lot of good stories here to give you hope.
After 4 rounds with the Carbo, Alimta and Avastin, she has now been dropped down to Maintenance of just Alimta and Avastin for as long as she can tolerate. How long were you able to use the maintenance drugs before they had to re-evaluate? She had a response of high blood pressure and ended up being hospitalized for a hypertensive emergency - now on BP meds as well. Hoping for the best, as always. <3
I was on maintenance treatment for approximately five years before I had progression in my lungs(spots that we radiated). I then started my second-line of systemic treatment (after new biomarker testing), which I have taken monthly for more than two years without progression. Making it past the difficult Carboplatin is a big success for her. I hope the blood pressure meds are working and that she continues to do well.
I’m 11+ years with stage 4 lung cancer. My response to treatment was exceptional and rare. The treatments they use today are standard of care because they give patients longer progression free survival with better quality of life. The director of the Foundation that supports this web page recently published a book where she shares the stories of 20 amazing survivors.
All Best Wishes to you and your mother. Best advice I can provide mom is to keep a positive mental attitude and to stay engaged in appreciating her loved ones and life’s events, judg69
Did you mom's oncologist perform biomarker tests (using tissue or liquid biopsy) to determine whether she has EGFR, ALK, ROS, or one of several other types of mutations? Given that your mom is a female non-smoker, there is a good chance she has one of these mutations, and there are very effective targeted therapies that work well (with longer survival and less side effect). Definitely check with her oncologist about this. It's very important.
Usually she should also be tested for PD-L1 level. If it's high, one of the immune checkpoint inhibitors (ICI) may also work well. If no aforementioned mutations are found, please ask the oncologist to check PD-L1 also.
It's incredibly important to find the right course of treatment at the beginning. Best wishes to you and your mom on this journey.
Hi ajk, my horrendous journey began in August 21. Investigations for a bowel issue revealed Stage 5 NSCLC, by your accident picked up in upper left lobe. Test after test, showed it’s spread to upper vertibrae, small area of pelvis and unfortunately brain, one has small spot. It’s difficult for you and your mother, you just have to try your best and give all the support you can. I’m on immunotherapy 4th session and radiotherapy for my brain, that was very unpleasant with having a mask on my face which secured to the CT scan, I just got on with it. Like you say, you’ll get all the help and support on this site, they’re an amazing bunch! Sending love and best wishes. Pam
Putting things into a kind of perspective. Between 1968 when my dad was diagnosed with lung cancer and 2006 when my mom was diagnosed with lung cancer there were three drugs approved for first line treatment. In the last 4 years there have been more than 30 new treatments and novel combinations of older treatments approved for first line treatment.
There’ve been advances in radiation and surgery as well. In 1968 they used cobalt to radiate my dad’s cancer. Today they use mainly photons and now some are offering proton radiation.
There are still more drugs in development. It’s an amazing time to be a patient or a patient advocate.
AK
Is this a first or second opinion? Depending on where you are and other resources that might be available get a second opinion. This is your Mom's life and you want the absolute best for her.
The others mentioned testing for biomarkers and that is extremely important. The new therapies are amazing and unknown to the general public. I went for Stage IV NSCLC to No Evidence of Disease in less than ten months with no side effects. That's why you need testing and even a second opinion.
Take the time now to get on the right treatment path. It's like programming your GPS before you take the trip instead of heading out the door without a roadmap.
Which biomarkers were you positive for? I'm glad to hear your results were so remarkable!
The most significant factor was that I was PD-L1 positive and my expression was an extremely rare 100%. My oncologists were very optimistic going into immunotherapy and have since said that a 100% PD-L1 expression made their treatment decision easy. This is the way immunotherapy is supposed to work and this is where we are with cancer treatment.
Hello aj
I understand exactly how you are feeling, overwhelmed, that it’s not happening, why me, and mostly waking up and thinking it’s a bad dream.
I was diagnosed with the same in June of last year, that’s when the rollercoaster ride starts, blood test for compatibility for trial, CT scans, PET scans, biopsies, the list goes on.
Initially on immunotherapy but ineffective and gave me nasty side effect of ulcerative colitis which resulted in my chemotherapy being delayed. I’m on Carboplatin and Pemetrexed. My cancer is not curable but treatable, but I can’t lose hope. Different drugs and trials coming along all the time do don’t lose hope.
There are success stories on here some living clear of cancer for 10 years or more.
You have the strength and your a warrior caring for your Mum.
Hope this helps
Sending love
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Stage IV lung cancer
Update on my mum with stage IV NSCLC
My dearest Mom
Stage 4 Cancer 
