Hi frandy,
Here is a quick summary of my journey. I have stage 3B non-small cell lung cancer(NSCLC) and I received proton beam radiation (30 times over 6 weeks) and concurrent chemotherapy with Paclitaxel and Carboplatin (1 infusion per week for the same 6 weeks). This was back in the spring of 2022. After that I had a year of immunotherapy with Durvalumab/Imfinzi (1 infusion per 28 days for 13 infusions).
After the end of immunotherapy things were looking good. Nothing active in my lungs. I did need oxygen at home only when I was active. But it was a good thing I had it because about three months after the end of immunotherapy I started having trouble breathing. It came on pretty fast and I couldn't get enough oxygen. Had to go to the ER because my fingers and toes were blue. and I was desperately sucking on my oxygen machine when my son came and took me to the ER. I ended up in intensive care for most of my 21 day stay in the hospital. I was delirious for several days and it didn't look good but I slowly came out of it. The duvalumab caused bad inflammation in my heart (myocarditis), lungs (pneumonitis) and guts (enteritis). They fought this inflammation with prednisone, lots of prednisone, which causes it's own problems.
Not everybody gets this inflammation but you are so very right to ask about side effects. The durvalumab probably helped me get rid of any cancer that may or may not have been left over after radiation and chemo. But it definitely caused big problems in my life so there is good and bad that you have to weigh and decide. I had to go back in the hospital for another 14 days with breathing and heart issues. I got more prednisone then, the most I got was 1,000 mg methyl prednisolone per day which is the IV form of prednisone. That is a lot. It took months of tapering down from that dose to 6 mg per day which I will have to take forever because my adrenal gland shut down because of all the prednisone. I have had diarrhea for over a year now from the enteritis but it is slowly getting better and I can actually go places now. For a while it was very watery and frequent and one problem with that is all the oral medications I was taking (a lot) were just being flushed through me along with my electrolytes. I had to have several infusions to help with that so my irregular heart beat would improve. I still have breathing problems from ongoing pneumonitis. I need oxygen 24/7 now so it is more difficult to go places even with my portable oxygen concentrators. I got osteoporosis from all the prednisone and I got compression fractures in my nine lowest vertebrae, from T10 all the way through L6. I had to have three surgeries on those to strengthen them. This was very painful for two to three months but now I am able to walk again with a cane or walker and I am back in physical therapy to help with that.
Yes, I had a lot of side effects from Durvalumab and they changed my life. But side effects are unpredictable, you might not have any. However you certainly have every right to know about them. I happened to have a lot in my opinion but I also have to consider that I get CT scans every 3 months and I still do not have cancer back. I think there is a good chance Durvalumab helped with that. That is very important.
You are faced with a choice and it is not an easy choice but you will make the choice that is best for you. You do have to get some kind of treatment for the cancer, that much is critical.
I sure wish you the best during your treatment and long after.