robinef206

I thought I would update anyone who came across this. My dad was admitted to the hospital a day or two after I made this post. Initially, they thought he did in fact have a bad reaction to the opdivo, but then he never improved. In fact, he rapidly declined. They found in the CT that he had lymphingitic spread, which he did not have merely six weeks ago. His cancer had spread like wildfire. After spending about a week in the hospital, with his bilirubin climbing up to 33 (it's supposed to be less than 1), they suggested we go to hospice. He was transferred to hospice on Tuesday, and passed away peacefully this morning. We are all devastated and in shock, as he was playing golf the week of Thanksgiving. I was planning a wedding for January 20, which we soon realized he wouldn't likely make. We decided to have a wedding ceremony at his bedside yesterday, and it was so beautiful. He was barely awake, but was such a trooper and declined all pain meds so he could try to be as engaged as possible. He barely opened his eyes, but mouthed the Lord's Prayer. Already today, we have seen his presence. He was an avid golfer. My brother in law was taking out the trash today in his neighborhood in GA (we live in FL) and found a callaway golf ball under the trash can. My brother in law wasn't able to see my dad before he passed, so we figure that was my dad's way of saying hello to him. I know my story didn't end as we had all hoped, but there is still a lot of good happening. We are asking for donations in lieu of flowers for his service to be made to this organization, so hopefully other families can be spared the pain we are feeling. We will also be donating money in lieu of favors for our wedding in January. Thank you to anyone who reads this, for taking the time to listen to our story. I have found so much hope reading the stories on the web site.

Thanks Tom. Yes, he has had a really fortunate relationship with lung cancer up until this point actually. He was diagnosed in 2011 with stage IB, found complete incidentally, without any sort of symptoms. It was removed, no chemoXRT needed. Then, in 2016, he was following up with cardiologist and was found to have enlarged lymph nodes on a CT. Sure enough, it was cancer. At the time, he had radiation to the cancer, with a curative intent at that time. He had carboplatin in conjunction with the radiation, but it was the low dose kind that just enhances radiation. It wasn't a full dose. So when he had the follow-up PET scan, EVERYONE was shocked when we saw it had spread so much. So tehcnically, he has had progression with carboplatin, but he wasn't given a full dose. The oncologist thought Opdivo would be a better option with fewer side effects, so he decided to try that route. Unfortunately, he has been feeling really crummy since he started. The bulk of the disease is in his liver, so I guess it makes sense that further injury by way of tx in the liver could be harmful. Up until this point, he had been entirely asymptomatic from the cancer itself, so we were remaining optimistic that we could get this under control. Now, we're just in a weird holding pattern. We called the doc last night, who is ordering some stat blood work, so hopefully we can figure out what's going on. Thanks again for responding. I'll keep everyone posted.

Hi all! My dad just started opdivo about 2 weeks ago, and is having what seem like pretty rough side effects. He did chemoXRT back in the summer, but he never had a full dose of the chemo (it was stage 3b with curative intent at that point, so the big problem was the XRT) so our experience is limited in regards to side effects from tx. He has mets to the liver, so some liver function side effects are expected. However, he's having a low grade fever, extreme fatigue, loss of appetite, and slightly yellowish hue to his skin. I'm wondering if he's having a hepatitis type of immune response. Does anyone have any experience in this arena? Of course, we're putting a call out to the doc to just make sure it's nothing urgent. Has anyone gone on steroids and off of opdivo for a little bit? We're obviously nervous for him to stop tx as we feel like this cancer is already out of control. Any input would be fabulous... thanks!!! Robin

Hi everyone! My dad was diagnosed in 2011 with IB adenocarcinoma. Underwent wedge resection, without need for chemo or XRT. Fast forward to 2016, when he underwent a CT scan to check on his (for now) stable aortic aneurysm, and they discovered 3 enlarged lymph nodes. Found to have IIIB adenocarcinoma. Underwent chemoXRT. PET in Oct revealed excellent response to the chemoXRT, however, we unfortunately missed the "curative intent" boat, as the cancer had already spread to the liver (too numerous to count), possible bony mets and possible lung nodules. So far, he had been asymptomatic entirely, outside of the side effects from the chemoXRT. He does not have your typical mutations, so onc recommended starting Opdivo, as he feels it works just as well, if not better than, standard chemo with fewer side effects. The jury is still out regarding Opdivo, as he's only had one infusion. As soon as he had the infusion, he immediately started feeling symptomatic, unclear if it's from the disease or the tx. Substantial increase in fatigue, dysguesia, queasiness, and feverish. I'm not even sure he has the PDL-1 expression. Anyway, I'm asking about BRCA1 and CDKN2A mutations. Does anyone know much about these? The doc felt that if Opdivo doesn't work, we could potentially try olaparib or palbociclib instead. These have been approved as targeted therapies for recurrent ovarian and I think breast cancer. I haven't found much research on lung, except for ongoing some clinical trials in SCLC. Does anyone have any information, either anecdotally or clinically, about these mutations and using the other drugs? Thanks so much! By the way, I'm getting married in January, and in lieu of gifts, my fiancé, sister, and brother in law have decided to donate money to this awesome organization. We are hoping we can contribute to a path toward better treatment options.