Met stage 4 kras + high p d l

[Katherinea]

Hi all I’ve been reading this forum for weeks and decided to join.  Am looking for some helpful guidance as I’m a little bit lost, frustrated and very saddened. My mom was diagnosed with stage 4- squamous cell ca multiple lung nodules were revealed in a c t during a e r visit in September.  Long story short,  In April she had a skin lesion removed. It was syringopaolilderma and our second opinion visit with a skin oncologist at Rutgers cinj yielded a “don’t worry lesions healed well, nothing for us to do besides review path lab slides, come back in a year”. Long and behold. The review of slides came back positive for squamous cell ca. Which They never told us.  We found out after my mother had a lymph node biopsy it was sq cell c a. ( after an abnormal mammogram which picked up lymph node inflammation ) And after I obtained records from our April visit their path review found sq. Ca. I’m beyond upset. 

We saw a lung specialist who said mini nodules don’t appear to be lung cancer but instead maybe  a metastic skin cancer, which can occur but only in a 2-3% patient population based on clinical studies.  Then she had an ebus done on tracheal nodes and that’s positive for squamous.  A repeat c t during another e r visit also showed doubling of lung nodules from last e r stay, spinal Mets,  so now they say it’s lung cancer and no one did anything. And the hospital called in a radiation oncologist who said it would be wise to do spinal radiation after we did the spinal mri  (mind you the oncologist never even ordered a spinal m r I until I told him that we are getting one done near our local hospital) 

My mom was placed on carboplatin and pacl. With Keytruda.  Her first chemo dose she didn’t receive Keytruda because the cancer center in Nj didn’t get approval from insurance on time for Keytruda! Second dose of chemo was given and pacl was reduced to a 1/3 rate to be administered once weekly due to moms worsening weakness post chemo. We just had our follow up appointment. No longer are there many 30+ masses in the lungs but there is a 4 cm and a 2 cm. Still.  New findings show a “necrotic mass “ in the liver and metastic processes in both adrenal glands and rib cage, I didn’t read the cat results until after we left as they didn’t print it out u til then.  Onc said nothing about the liver mass finding nor the rib mets, all he said we can discontinue chemo due to the progressive weakness and my mom not being to handle it and just continue Keytruda now. 

Im at the point of looking at new places such as memorial Sloan or maybe penn state.  I’m so frustrated I’m a nurse and also work as a nurse practitioner. I contacted the onc about the c t findings and how come he never mentioned anythinf about the liver. No response back today.  I do know that Keytruda works with high levels of p d l which she does have. But if we withhold the chemo are we giving the cancer a better chance of spreading, ?   Also this necrotic mass and rib Mets which wasn’t there before, does it mean it’s spreading more? she’s had two rounds of chemo with one Keytruda dose, i feel like this place is just making us spin our wheels in mud & they just doing bare minimum to cover their asses after misdiagnosing her 9 months ago