@abob I am currently on my 3rd Cancer center. I was originally dianosed 7/24 with NSCLC, stage 2b. I was offered immediate surgery but because the mass is located in the right lower lob and resting it's big head against my rib cage, the surgeon said the it would be difficult (maybe impossible) to do robotic surgery. Which would mean open surgery where I would be cut from under the breast to the shoulder blade and have one to two ribs removed. At 73 I really want to try to have robotic so that I can heal quicker, so I opted for pretreatment to reduce the size of the mass first.
1st Cancer center (2 hr drive from home), said only option was 4 rounds of chemo/immunotherapy. When I opposed the use of chemo and ask from SRBT (which was noted as a possibility on my CT scan) or immunotherapy without the chemo, the oncologist told me that I was wasting his time and that I needed to just get the surgery done. At that time I scheduled the surgery (for 9/24) but also reached out for a 2nd opinion. ......next?
2nd Cancer center (4 hr. drive ) said that there was a newer study where I would have 4 round of ipi/Nivo. Therefore eliminating the need for chemo. I was ecstatic as I really liked the doctor I saw so I canceled the surgery. I had my first round of ipi/Nivo on Halloween/ 2024. Here's where things went south. I got pretty sick starting 2 days after the treatment. High fever, new cough with blood, aches and pains, no desire for food and some weight loose. I also had a hard time keeping my O2 higher than 90. I called the hotline but was told that coughing up blood was normal and to use my O2. My primary care doctor was concerned that I might have an infection from my port that was put in 2 days prior to the immunotherapy and ordered a chest x-ray. It showed the mass was cavitating and that I had ground glass in both lungs. Finally got in for an appointment 2 weeks later, which was with a new doctor. He did not do another immunotherapy but rather a ton of blood work, ordered a CT with contrast, and a covid and flu test, then sent me home. Another 2 weeks of being sick........ New doctor wanted to see me 2 weeks later to discuss my tests etc. (I refused to drive 4 hrs and did a online appointment which he was opposed to but did. ). At that appointment he told me that the mass cavitating was what caused the coughing up of blood. The ground glass was caused from the ipi/Nivo, and that it was fluid on my lungs. He prescribed 80 MG of PREDISONE for 7 days. He said that he couldn't see me for 13 days and it would be ok to just stop the prednisone before I saw him. (having had prednisone in the past, I knew this wasnt right!) So I found another cancer center ( 2.5 hours from home)
Cancer center 3..... What a difference! First thing the doctor said was "you've driven a long way today, what can I get you to eat and drink?"...Then he told me "you have not had the care you need. I will be your ONLY doctor, you are family". He went on to say that he called the doctor at center 2, because he was very concerned with the order to stop the prednisone cold turkey. He said he was going to stop it gradually. ( He must have really upset the doctor from center 2, cuz by the time I got home, he had called in a new script for the prednisone with a step down program !) This doctor also questioned the use of ipi/Nivo as he could not find any studies where it was approved for 4 rounds at stage 2B. It had been studied in 2020 but stopped due to side effects. So here's the new plan. 1) Stepping down prednisone to from 80 to 10mg. 2) ONE round of ipi/Nivo while on low dose prednisone. 3) Two rounds of nivo only, 2 week apart . then surgery!
Thank you for reading all of this! It sure is nice to get it out there and know someone on the other end of this computer cares!
One more note: Got a call yesterday from Thyme Care..... Seems center 2 referred me. Anyone else have experience with them?