Anyone have Aliya (PEF) treatment for lung cancer? How did it go?

I'm having trouble getting my molecular analysis. Its been almost 4 weeks and I can't get anyone at the hospital where the procedure was done to return my calls. They are doing a fish analysis one by one for each driver mutation. My oncoligist, the pulmonologist and I all want tissue sent to Caris for ngs. I absolutely hate corporate medicine. I can't speak to the dr office but only to receptionists. They say they'll check, but dont. No one returns calls or answers portal messages. So here we all sit not knowing if this is a new primary (we think so) or a metastasis.

I'm having trouble getting my molecular analysis. Its been almost 4 weeks and I can't get anyone at the hospital where the procedure was done to return my calls. They are doing a fish analysis one by one for each driver mutation. My oncoligist, the pulmonologist and I all want tissue sent to Caris for ngs. I absolutely hate corporate medicine. I can't speak to the dr office but only to receptionists. They say they'll check, but dont. No one returns calls or answers portal messages. So here we all sit not knowing if this is a new primary (we think so) or a metastasis.

@ladylennie not getting the answers you need must feel frustrating. I know for me, it took about 3 weeks - and there was the July 4th holiday, so hopefully you'll hear from them soon. 🤞🏻 have you tried calling the nurse line for your oncologist? I've had good luck getting the info/escalation I need by doing that.

@mamajite I've called everyone as has my oncology nurse navigator. I even called Caris directly and confirmed they had received nothing. I finally found out the hospital pathology dept sent out samples. They did individual driver mutation analysis using fish, not ngs, and found all negative. But they also noted tests had minimal tissue. Results sent to oncology and im waiting to see if they want ngs or if this is enough. It took 2 weeks of daily calling by me and oncology to get this answer.

I'm not sure I'm replying in the right place, but re. Aliya, my best guess after reading the various CT scan reports is that the treated nodule in my lungs (not identified as definitely cancer, but atypical cells) is that it shrank from 12 mm to 4.2 mm since procedure and the adjacent nodule (not treated) shrank from 9 mm to 2 mm. I have a follow up appointment with pulmonologist in early October. Will report back then.

Oops, the CT scan was 6/15, not 5/15.

@kakalena
My appointment with the pulmonologist was moved up to this morning. I just finished my video visit and the latest numbers from March 2026 to September 2026 of the two nodules in my lower left lobe were: treated nodule went from 10mm to 6 mm, and the adjacent nodule went from 8 mm to 4 mm. So, that's a 40 % decrease in one and a 50 % decrease in the other.
I am continuing with the Nivolumab immunotherapy every 4 weeks which is now available subQ instead of i.v.
I am feeling well and keeping active. I thank God every day.