Can always count on the Wizard for a concise and excellent summation!! As a person with a brain met treated with SRS BEFORE my Phase 1 trial of nivo run by Dr. Weber and another brain met that appeared then disappeared while on nivo alone, but with NO radiation – I have followed these points with a great deal of interest. For anyone interested in all things Checkmate 204 since 2015 there is this: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2019/07/ipinivo-results-in-melanoma-brain-mets.html
- September 9, 2019 at 9:09 pm
And to think…folks with CNS disease were kept out of all trials for ever soooooooooooooooooooooo long. Slowly we turn!! But thank goodness we do!!! Thanks for sharing Ellie.
BTW, peeps – Weber is to be honored with the Humanitarian Award at the MRF gala in New York October 17. I may be prejudiced, but there really is no one more deserving. – c
ed williamsParticipantHi Celeste, I posted this back in July and if you go to the 24:48 min mark you will find Dr. Davies of MD Anderson talking about brain met research at MD Anderson, there is some interesting stuff on pathology RNA of brain mets and radiation and OXPHOS at 30:00 min mark. https://www.youtube.com/watch?v=wwup6wOizdo&list=PLOnM_erAQqIBK-ASSZujKruJemGc-FQQR&index=6&t=0s
- September 9, 2019 at 9:33 pm
I don’t know how I missed that….but that was very interesting!! I agree with his comments regarding radiation and melanoma tumors generally – particularly those in the brain – in that we have figured out (it seems) that radiation facilitates t cell infiltration – a good thing!!! Interestingly, in my study – we POST brain met folks (because back in the day, to get into the trial your brain mets had to have been either resected or radiated and resolved before admission – for both my “NED arm” as well as the opposing one with “active disease”) did very well!!!! Here’s the report of my arm of the study: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/cest-moi-results-from-33-raties-in-my.html
- September 10, 2019 at 1:05 pm
Which notes: “Brain metastasis subgroup: 10 patients with resected CNS disease were enrolled. 3 in cohort 1, 2 in cohort 2, and 6 in cohort 3. Only 2 of these 10 patients have relapsed after median follow up time of 22.5 months, both were in cohort 1. The first patient completed all doses of study drugs and developed a new solitary lung met that was resected after 47 months on protocol; she again has no clinical evidence of disease. The second was diagnosed with recurrent CNS disease after her first treatment with study drugs and expired 3 weeks from start of protocol from CNS hemorrhage.”
In conversations, Weber noted his own surprise at how well the brain met peeps did. Now, was this response due to the prior radiation and treatment most of us had already had??? Who knows?
The OXPHOS stuff is really interesting!!! Hope those special MICE can teach us ratties a thing or two!!! It remains incredible to me that admitting (or not) folks with CNS disease into trials is still a “thing”!!!! I have been yelling about this for sooooo long! https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/06/asco-2018-survival-of-melanoma-brain.html
It is absolutely unconscionable for ANYONE to be disallowed from a clinical trial!!! Reasoning that these sicker patients would spoil the pot, outcomes and reputations of the researcher, drug company or institution is ludicrous at best and cruel at worst! They can be put in their own arm. Call them “the dregs” or whatever you like! We would still see what happened to both the healthier specimens and those ratties less so – no harm no foul!!!
Thanks for sharing Edster! You da best mouse EVAH!!!!! MMMMWAH! – les
Hi Bubbles, yeah Dr Weber is truly one of a kind. I knew him from his Moffitt days. I still think how big of a loss it is for Moffitt that he left. Anyway, I think that he deserves anything that he is being nominated for and more. But he is so humble. He would never praise himself. He just keeps doing his job, helping patients and doing research. Truly a great person.
- September 10, 2019 at 1:46 am
Nivo+ipi brain mets results surprised me, to be honest. In a good way. Finally there is hope for people who need it most. And they still have no idea how long the responses are going to last. I am hoping a lot of these folks are cured. That would be awesome. I need to read your blog, but tell me – are you still NED? For how many years now? Any word from your doc that you may be cured?
Whole story on blog. Dx = Stage IIIB in 2003. Stage IV with lung, brain (April) and tonsilar (October) mets in 2010. Surg to lung, tonsil. SRS to brain met. Started Phase 1 trial of nivo at Moffitt in late 2010 – another small brain met. NED for melanoma since 3 months into trial with no additional treatment since last dose of nivo (per trial protocol) in June 2013. All visits and discussions documented. c
- September 10, 2019 at 12:36 pm
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