Well it’s been nearly a year since my last treatment. A lot has happened during that time but it took a long time to figure out. The leg pain persisted even after I stopped immunotherapy. I then had to dose off each of my meds individually to see which one was causing the problem. I had a lot of meds. In the fall, I went through another 4 months of tactile hallucinations and face picking. I had swelling in my legs. During that time I started dosing off methadone. It was one of the last meds to try to eliminate the pain in my legs. It took 6 months of regularly reducing the dose to finally get off of it. Within a day, the leg pain was gone. It was replaced with a horrible burning pain and tightness in my feet. Apparently the methadone was helping to alleviate the neuropathy I didn’t know I had. I still have significant pain in my hips and cannot stand for longer than a few seconds or walk more than a few steps because of it. I use a wheelchair when I go out of the house because of this pain. I hope to get stronger and get the pain managed again without all intolerable negative side effects. The methadone has been replaced with Dilaudid and I’m trying a new pain patch called buprenorphine. We’ll see how it goes. Hopefully the benefits outweigh the risks. I just had my most recent PET scan this week and everything looked great with no active cancer detected. They can’t tell me the cancer is gone but it looks promising. I will continue to follow up with oncology every three months with CT scans and a PET scan here and there if needed. I will also continue to have brain MRIs and follow up with radiation oncology every 3 months for the time being. My next brain MRI and follow up is scheduled for next week. I hope to have good news from that test as well. I asked my oncologist about recurrence expectations and he said there’s not a lot of data available due to the newness of immunotherapy as a treatment option. He did find a study online to show me that in people like me with Stage 4 non small cell lung cancer who had at least 2 years of immunotherapy (I had 2 1/2) that the rate of people who didn’t have any recurrence of their cancer within 5 years is 15-20%. He said he has some patients who have gone several years longer without recurrence as they were in on clinical trials so their data wasn’t included in the study. But at this point I have at least a 20% chance of no recurrence within 5 years and hopefully the reports will get even better as time goes on. Incidentally the results of people who had chemo only and no recurrence were only at 5-10%. So the immunotherapy doubles my chances of not having a recurrence. Of course that study still gives an 80% chance of recurrence within 5 years. So I will continue to be followed closely by oncology for at least 5 years with the time between scans slowly increasing after I’ve hit the two year mark. Another positive take away was that those patients who did have a recurrence had good outcomes when reintroduced to immunotherapy. So at least they could still use it as a treatment option. I am hopeful for smooth sailing as I continue on this journey and pray I’ll be one of the lucky ones who doesn’t have their cancer come roaring back. But if I do, I will take the necessary steps to beat it down again. Thank you all for continuing to support me on this journey! It’s not easy but so worth being alive and I couldn’t be more grateful for the additional time I’ve been given. Of course I could always die some other way (like a car accident) but hopefully that won’t happen. 😉