Out of Nivolumab/Opdivo Clinical Trial

[Avanat]

My husband, Steve (Stevana on this site), is now out of the phase 2 clinical trial for the immunotherapy drug Nivolumab (a/k/a Opdivo). He started the trial in August, 2020 which also included infusions of Docetaxel. His last Docetaxel infusion was on December 3rd and he continued with infusions of Opdivo alone every 4 weeks since then. Unfortunately, he suffered from inflammation of his mouth since the start of the trial. At first it was thought to be thrush but later determined to be something called stomatitis which is a rare side effect of Opdivo. He was allowed a short break from the trial to allow his mouth to heal (he is using oral Dexamethasone rinse) but since he still had signs of stomatitis, his MO told him at our visit on May 27 that he was taking him out of the trial because he was concerned that the stomatitis might become permanent if he stayed on it. Although Steve was willing to stay on the trial, the decision to stop was made for him. He’s now glad as he didn’t want to have stomatitis the rest of his life and he's already seeing signs of improvement. We are grateful for his doctor looking out for him and now this will allow him to maybe try other therapies he couldn’t try while on the trial.

Steve had a great response to Docetaxel and his scans in March showed his lymph nodes had shrunk, his bone mets were stable and no new cancer growth was detected. He will get scans again in a few months which will show if the immunotherapy was working too. His MO was very pleased with his blood work from his last visit because his PSA is now .04, the lowest it’s ever been. Since the start of ADT treatment in April 2020, his PSA has gone lower each month. His MO also told him that he’s had the best response (other than the issue with stomatitis) of any other participant in the trial so far.

The free Opdivo trial offered by MaleCare is similar to the trial Steve was on and worth the try if you qualify. Here's the link: healthunlocked.com/prostate...

You can read Steve's updated profile for more details.

[JPOM]

glad you posted this - a couple months ago, i was eating pizza and started tasting blood - rinsed out my mouth and found gums, tongue, palate and cheeks were not just bleeding but layers of skin were peeling off! Was terrified, as it continued for a few hours!! no pain, just scary as hell. It finally stopped and next day was gone! I chalked it up to some kind of bacteria in the pizza, which i dumped after only 2 slices, when the nightmare began. Was ready to sue Domino's but couldn't prove it. I figured it was gone, cleaned house meticulously, sanitized whatever i could... but 2 weeks ago... it happened again! not as severe, only one layer of skin peeled, bleeding stopped after only 2 hours. Now after reading your experiences, may have to check out the possibility of stomatitis, induced by the ADT combo i've used successfully to keep PSA<0.1 for the last 3 years: bicalutamide, finasteride and tamsulosin - see my profile here for history.