Jaclinfarr

And yet more good news today! We finally reviewed his brain MRI results: NED!! No evidence of disease!!! I think even our doctor was a bit astonished by these results. Of course, he’s not out of danger yet. He’s still got a long road ahead of him but today is a good day and we are thrilled. The plan is to start him on Opdivo only next week then continue that every month for 2 years – provided he doesn’t need to go back on the Braf/Mek inhibitors or the Opdivo/Yervoy combination.

For those who might be new to this thread, here’s my husband’s history:

2020- treated for Stage II melanoma on chest. No spread to lymph nodes.

2024 – Approximately 4 months ago: admitted to ER with a “massive brain hemorrhage.” They subsequently discovered this was caused by melanoma tumors. They found 4 in his brain and 3 in his lungs. Craniotomy to remove the largest tumor that was causing the bleed.

Approximately 3 months ago: had 5 gamma knife treatments to treat the remaining 3 tumors. 2 weeks after completing the gamma knife sessions, he was started on Braf/Mek inhibitors for 1 month.

Approximately 6 weeks ago: first and only infusion of Opdivo/Yervoy. Experienced side effects about 6 hours after infusion – pain and burning in eyes. Led to diagnosis of uveitis. Also had a skin rash and dramatically lowered sodium levels. Was hospitalized for low blood sodium in ICU for 3 days. At that point his dr decided to pause the next infusion.

Today: uveitis cleared up. Some itching and inflammation in ears. Still some rash. “Resolution of multiple intracranial lesions.” Tumors in lungs have shrunk substantially. No new evidence of disease.

So it would seem the one dose of Opdivo/Yervoy is working. Of course, given what we’ve been through the last four months, we’re both happy but a little cautious to celebrate too much. Let’s hope this strong trajectory continues!

For those of you wondering about the efficacy of a single dose of Opdivo/Yervoy – this story is only one person’s journey and of course, we are all so different. Bodies respond very differently to these medications. But I hope my husband’s story is helpful to some.

Thanks very much JudiAU!

Well good news today in that his body CT showed a pretty dramatic shrinking of tumors in his lungs. Of course, we won’t know the outlook on his brain until the MRI results come in. Now he’s also got inflammation in his ears – over a month after his infusion. I guess that might be a good sign?

His drs haven’t ruled out putting him on steroids with the immuno at the same time but they do seem more cautious to do so compared to some of the stories i’ve heard from people online. And with monthly MRIs planned, they are keeping a close eye on brain mets. The last time they checked end of May, his brain mets had already shrunk after gamma knife and Braf/Mek inhibitors and of course he had a crainiotomy in early March to remove the largest tumor. The remaining 3 were very small. We should get latest brain MRI results any day now.
We are feeling hopeful and will keep folks updated in case anyone else wondering about this approach.

Thanks JudiAU. That’s helpful. Yes he’s working with a medical oncologist at Fred Hutch/Seattle Cancer Care Alliance. She’s a melanoma specialist and has co-authored a paper on the efficacy of lower dosing on the Opdivo/Yervoy. So we do have a high level of trust with her. I just wanted to share with him some examples of one dose working. They haven’t ruled out returning to the double dose or even moving to a 50% dose. They are doing monthly body scans and brain MRIs to see how things are looking. She’s said with such a strong reaction early on, about 1/3 of people go on to develop worse SEs, 1/3 get new SEs and 1/3 do better with no SEs. So she feels it’s worth allowing his body to calm down then returning to one drug. It does sound like doctors are able to get creative with their approach to this. It’s all a huge learning curve for us so I really appreciate everyone sharing your stories.

Thank you Edwin. I’m so happy for you that your recent scan showed NED. It’s helpful to hear your journey. Hopefully they won’t need to return to the double dose but it’s nice to hear that may be an option again further down the line. Thanks for responding!