AMcReader

I meant to add the treatments I’ve previously done.

– Nivolumab (8 months) & SRS to brain after surgery

– Ipi/Nivo (only tolerated 3 of 4 combo treatments), but saw significant shrinkage. Then added in SRS to left lobe of lung. After liver panel finally came back down to normal 5 months later, decided to hold on Nivolumab since my lung lesion was stable. Was able to enjoy a blissful 18months off treatment until stomach lesions arrived.

– Started Vem/Cobi alongside Atezolizomab 9/15/20 and maintained benefit until 3/2021, when we saw a new lymph node lesion. Did lots of monitoring, while investigating clinical trial options and mostly held steady until June. In July, I finally signed the paperwork for a trial but due to what I believe to be endless foot dragging, I did not start the trial until 9/2.

– Trial is a STING injection, which is meant to essentially make the tumors “hot” to your immune system again. I received 4 of these injections over 28 days and then started the immunotherapy part of the trial which is Ipi/Nivo on 9/28.

Thank you all for taking the time to respond. My initial reaction was the same as Mark and Warren recommended, do the WLE or utilize injectibles. However, after some additional conversations with my two Melanoma specialists, for now I’m proceeding forward just on my current treatment which is working. One, this treatment is working and two, I do feel a certain sense of responsibility to this clinical trial even though I’ve already received the part of the trial that is new.

Also, neither of them wanted me to do the WLE because I’m currently having trouble with the tumor in my stomach bleeding and needing transfusions every 7-10 days and also I’ll be honest it being on the back of my head makes it a pretty intense procedure and not one I’m unfamiliar with. I had a WLE done on my head when I was 8 on the first melanoma that was ever found on me and it did not go well. Resulting in two intense surgeries and wounds that did not heal easily or well.

No matter what, these other options remain if I need them moving forward.

Thanks again for all of your thoughts, I truly appreciate it!

Thanks, Celeste! That was a good, succinct read. Some of the reading I’d done related to DTING had been a lot more complex and hard for me to follow.

For the record, you are correct being a rattie is certainly not for the faint of heart!!!!!!!! It does give me even more appreciation for all the brave ones who came before though!

Thank you, Ed!! I’m definitely going to check out what Dr. Luke shares about STING!

Hi Warren, You have an excellent memory! I’m from Milwaukee originally, but I live in Columbus, Ohio now which is only about a 3.5hr drive from Pittsburgh. Right now, everything is happening in Pittsburgh so it’s kind of a pain but they’ve been good about scheduling things all in a row to make the trips as quick as possible. It’d be much easier if I could do this in Columbus, where I live 10 minutes from the clinic, but Ohio State Medical Center isn’t running any good trials for me right now so we all thought it was best that I pursue this trial in Pittsburgh.

Awww, jbronki, your posts are always the kindest! I’m very hopeful about this trial and will certainly keep everyone posted on any strange responses or side effects. We all need each other through this!

I hope life is treating you well and that you enjoyed the heck out of your summer!

Thank you!!

Thanks for sharing! This is how my doctor described it, but it was nice to see the visuals and hear someone else’s take.