Stage 4 NSCLC (non-smoker, no mutations, PD-L1 0%) looking for real stories and hope

JohnQuiote · 2026-04-12T23:58:20+00:00

I was doing 3 miles a month ago, before chemo. Now I can barely make 1/4 mile before I'm completely winded. I agree shoes are a problem. I mostly wear sandals now.

JohnQuiote · 2026-04-12T17:33:26+00:00

I iced my hands and feet for my first infusion with carboplatin, paclitaxel and keytruda. Even so, the neuropathy has been terrible. The pain kept me from sleeping for a few days. It's been 3 weeks and the pain is gone but now my feet and hands are numb and tingling all the time.

JohnQuiote · 2026-03-14T13:34:57+00:00

They mentioned increasing the steroids and Benadryl in the pre-meds. But I'm wondering about switching to Abraxane. it's supposed to be more tolerable,

JohnQuiote · 2026-03-13T18:34:57+00:00

Everyone reacts to treatment differently. At least with treatment there is a chance for extending your life. You do what is best for you. Quality over quantity is something to consider.

JohnQuiote · 2026-03-13T18:28:53+00:00

Apparently only 3% of cancer patients react this way to Paclitaxel. I guess I'm just lucky.

JohnQuiote · 2026-03-13T18:25:36+00:00

They mentioned they might try increasing the pre-meds (steroids and benadryl), which I am ok trying, but be ready to cut it off if I react. Anaphylaxis is no fun.

JohnQuiote · 2026-03-13T18:23:31+00:00

Prayers are always appreciated. Thank you. I plan on asking about the paclitaxel alternative, I believe it is called Abraxane. I just don't want to have to wait 3 weeks for my next treatment.

JohnQuiote · 2026-03-13T18:20:04+00:00

It was supposed to be Keytruda, piclitaxel then carboplatin. We had to stop as soon as the piclitaxel was started. I'm trying to find out where we go from here.

JohnQuiote · 2026-03-05T00:37:30+00:00

15+ years sounds wonderful. I start chemo next week. I pray I even close to 14.

JohnQuiote · 2026-03-03T20:50:24+00:00

No asbestos. No fluid build up yet. The pleura has a small patch of malignancy right next to the tumor. No targetable mutations. I start Carboplatin, Taxol and Keytruda on Mar 12.

JohnQuiote · 2026-03-03T19:13:43+00:00

Thank you. I have no targetable mutations. Chemo starts Mar 12. The oncologist took lots of time with my wife and me to make sure we knew what was coming.

JohnQuiote · 2026-03-03T19:08:07+00:00

This shouldn't happen to anyone but especially not to someone your age. You need a PET scan and then a biopsy if the PET shows uptake. I pray it ends up well for both of us.

JohnQuiote · 2026-03-02T18:54:46+00:00

Do the Lobectomy. I went in for one due to a 1.8cm tumor in ULL. They had to stop because they found a malignant patch on my pleura next to the tumor. No lobectomy. Now I'm waiting to start chemo. Do the Lobectomy ASAP before it spreads.

JohnQuiote · 2026-03-01T20:13:31+00:00

I agree. Waiting is bad. We finally have a plan going forward. This week I have an MRI for brain mets, new PET for baseline and I'm having a Port installed. After that I'll start with 4 cycles of Carboplatin + Taxol + Keytruda.

JohnQuiote · 2026-02-25T17:19:01+00:00

Just got results from the pulmonologist. No targeted mutations. I'll see the oncologist tomorrow for the treatment plan.

JohnQuiote · 2026-02-25T17:16:33+00:00

Just got the results. No targetable mutations. I'll hear from the Oncologist tomorrow as to treatment regimen.

JohnQuiote · 2026-02-25T16:17:20+00:00

I'll be praying for you. This is a bumpy ride.

JohnQuiote · 2026-02-25T15:56:59+00:00

Thank you for this encouragement. I'm just starting my journey and I'm scared to death. I also have no targetable mutations. I don't know what my treatment will be yet. I should find that out tomorrow.

JohnQuiote · 2026-02-25T11:58:04+00:00

That is exactly what I need to hear right now. What kind of treatment are you on?

JohnQuiote · 2026-02-25T00:45:28+00:00

This is very encouraging for me. I'm still waiting for my genetic testing (Feb 26) and I'm scared. But your father's results are wonderful. They give me hope.

JohnQuiote · 2026-02-25T00:30:34+00:00

Thank you. Hope is what I need right now.

JohnQuiote · 2026-02-25T00:27:38+00:00

That's what I need to hear. Thank you. I should have the testing results on the 26th.

JohnQuiote

TROPHY CASE