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December 4, 2013 at 2:48 pm #21695
Hi it has been a while since i posted. My wife is 6 months out from completing ipi at UCLA. She just got her scans done and her multiple subcentimeter lung nodules are still stable with one of the nodules showing a 50% decrease. However one brain met was found. They will be doing SRS on it in the next week of two just trying to get thing scheduled. After it is zapped we will reintroduce ipi as she cant do any trials since she does not have measurable disease. My question which i have asked on a few other sites/forums is are there folks out there who have had brain mets that are still here 2, 3, 5 years out. Just looking for something to hang onto here. ThanksDecember 7, 2013 at 4:11 am #63095kylezParticipant Hi Eric,
I am still here 2+ years out. Knock on wood. I started with lung mets Dec. ’09. After IL-2 the next summer, my lungs have been NED ever since. But some horses got out of the barn door; that fall 2 brain mets showed up and were treated with neurosurgery+SRS. For several reasons I’m pretty sure that the smaller one was not completely zapped and began regrowing. That fully recurred and 3 more showed up in the late spring ’11
This second time I was able to be treated at UCSF, with neurosurgery+SRS, plus one course of IPI. That winter they had a hard time determining if there was new activity in my brain, or if they were seeing radiation effect and/or swelling from an IPI response. After 4 MRIs in one 14 week span, they decided it was the latter. My brain has been stable since. Knock on wood.
I hope that helps. I know I didn’t think I would be here typing this, 3 years ago. Wishing you the best for your wife.
– KyleDecember 7, 2013 at 2:39 pm #63096
Thanks Kyle…..wish you continued luck for many many more yearsDecember 7, 2013 at 3:56 pm #63097Celeste MorrisParticipant I guess the three of us are just peas in our own special pod! A bronch revealed melaoma in my right upper bronchus in April 2010. Scans to see if anything else was going on showed a met in the brain. That very month I had SRS to the brain met and the right upper lobe of my lung removed. I had two and 1/2 years of anti-PD1 thru a trial for NED stage IV patients in Tampa that started in 2010 and remain NED today.
Hang in there! Wishing all of you my best. CelesteDecember 7, 2013 at 4:49 pm #63098
Thanks Celeste….keep it up….December 11, 2013 at 2:26 am #63099AliciaParticipant Eric, I had two small brain mets in 2004 that were treated with stereotactic radiation. Still here alive and kicking!
AliciaDecember 11, 2013 at 6:43 pm #63100
Thanks Alicia…she will be doing srs next week followed by a reintroduction of ipi….hoping for good results like yourself…
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