Not sure this is the right thread - please feel free to reposition as needed. Just wanted to cross-post / share from social media, because there's not much positive around for us younger (relatively) people with brain mets from MBC - I hope something a little positive may help give hope.
Here goes: I just had my second craniotomy last week - pathology came back yesterday - it was all necrosis, no new growth more than a year after my first surgery and radiation to the same area. I wanted to share my truth - I know that reading stuff that starts with "Traditional treatment options have minimal efficacy, and overall survival is on the order of months." is bleak indeed. But: my first brain mets were discovered in early 2015 (MBC with limited bone mets had been diagnosed in Feb 2014) - my daughter had just turned 6. She will be 13 this coming December! In case you are wondering: no I did not do anything special. I work full time (home office, from before Covid). I do pottery. I have a horse and ride (not right now, though). I eat sugar. I ski (when Covid does not prevent it), I try to travel as much as I can. The only thing I did differently (but not at all sure whether there's any impact), is that I started taking methadone in addition to regular treatments (Herceptin/ Perjeta / Xgeva / radiation, FUS). I have been at this long enough to know this is not "the cure". I am not a medical miracle - I'm just lucky and wanted to share it. Don't let anyone give you a "best by" date - NO ONE knows. Hang in there! If there is anyone here that might be interested in the FUS I mentioned earlier - prior to Covid, I participated in a phase 1 trial for a treatment that intends to temporarily dissolve the blood brain barrier in a targeted way so that more active agent can reach the location of brain metastases when needed. In my case, since I live in Canada, the trial was in Toronto (Sunnybrook). It was temporarily discontinued because of Covid, but I have heard they are back up and running (not sure they are looking for patients - here's the website:
https://sunnybrook.ca/research/conte...d-brain-tumour). Just wanted to share - I am not much active online any more (used to spend hours online when I was first diagnosed, but somehow feel I need to live more, post less... sorry...) I will try follow up occasionally in case questions come up, though...
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