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New member stage 3a NSCLC, NED after 15 months


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Hi all, thought I'd finally post something after 18 months of fighting stage IIIa NSCLC.  It may offer hope for those in despair.  I'll try to make it short and sweet.

I was a 49-yo runner, cyclist, and avid skier/ski patroller, and a non-smoker with no other comorbidities.  Was ski patrolling December 12, 2021 and felt like crap, was having a lot of trouble breathing, which had progressed from faint wheezing a year prior. Saw 3 doctors on December 14 (an ENT--he thought I had post nasal drip; my husband--he thought I had an upper respiratory infection; and my pcp-she thought I had allergies.)  I asked my pcp for an x-ray because I KNEW something was terribly wrong.  Went immediately for an x-ray, and when I was at the grocery store an hour later to buy Flonase (per my pcp suggestion), my husband called and said to come back to the hospital immediately and get an MRI.  There was a HUGE mass in my left lobe and all of my mediastinal lymph nods were ginormous.

Turns out it was a 7cm x 6cm x 6cm malignant tumor in my ULL with a 70% PD-L1 expression.  Had connections to a surgeon at MD Anderson who was hoping to do surgery, so I flew back and forth for these appointments.  Did 3 rounds of Cisplatin, Alimpta and Keytruda at home in hopes of shrinking it for surgery.  It didn't work (might have been inflamed from the Keytruda instead of tumor, but who knows).  Then did 7 rounds of Taxol, Cisplatin, and Imfinzi every 3 weeks.  Also did 35 rounds of radiation.  Tumor responded to these treatments and shrunk by about 50%.  Started Imfinzi every 2 weeks for 2 years (just finished a year), and did a PET scan this past April that showed NED.  I'm still in disbelief.  My next CT scan is this Tuesday.  I am hopeful I am still NED, but am still scared, as I am coughing a TON after last week's infusion.  Coughing so much it's giving me a headache.  

For my treatments I cold capped (for the Taxol one) and didn't lose any head hair, but the other side effects were hand and foot aches (neuropathy), 30 pound weight gain (145 to 175), cough (!!!), headaches, and overall fatigue.  My ears are much better, but loud noises still bother me.  My labs have been pretty normal, never had a problem with thyroid or kidneys.  I even started ski patrolling again this past winter!

So anyone reading this....DON'T give up hope.  I did, I was in deep depression and despair, as I had 14 and 17-year-old daughters. But western medicince can work. Immunotherapy can work.  I still have trouble with thinking about the future--I have read too, too much on longevity for cancer patients, but I'm really trying not to freak myself out.  I'm also incredibly private and don't talk to anyone about it.  Like NOBODY.

Here's to hoping that it's dead and that it doesn't come back.  Will update later this week.  Stupid fricking cancer!  Good luck everyone.

 

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  • PNWlady changed the title to New member stage 3a NSCLC, NED after 15 months

Every time we have scans coming or are awaiting the results we call our condition "scanziety"...so welcome to that club.  NED is great to hear and your diagnosis story is not unusual.  Many here were first diagnosed with everything from allergies to pneumonia until a final and more accurate diagnosis was made.  Keep sharing your story and I hope to see you in the forums often.  You have much to offer others; the story of your journey can become a guide to help the next person through theirs.

Lou

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Your story is a little like mine. I was misdiagnosed with allergies and acid reflux for several months after I had lost my voice. My PCP finally sent me for a chest Xray, and based on that, I was diagnosed in October 2019. My Stage was IIIB, and biomarker testing revealed an EGFR mutation. 

I had chemo and radiation first, then started targeted therapy in March 2020. I've been NED since April 2021. My next PET scan is in a couple of weeks. 

Good luck to you and hope your scan continues to show NED! 

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Thanks all.  I have a bit of a set back today though…I was coughing a ton the past few days, and really feeling run down.  The worst I’ve felt after a year of immunotherapy.  I woke up today with a productive cough and “sticky” lungs, and now my oncologist wants me to get an x-ray to make sure I don’t have pneumonia or pneumonitis. Ugh.

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Glad you’re pursuing care for the cough. Durva gave me some wicked pneumonitis….A real drag. So happy to be healed from that. Good luck with getting that under control.

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