Re: Please help
Kim~
So sorry you guys are dealing with this. I hope my experiences can be helpful to you, at least give you some information about options.
I've had brain mets 2x & recurrent liver lesions treated with a variety of modalities & therapies over the years.
First the brain mets:
In June 2010 we found a single 4mm lesion in the frontal L lobe of my brain.
It was successfully treated with Novalis - a single zap, effective & well tolerated, but kind of uncomfortable post op healing from the head frame screwed into your skull at 4 points to stablize the head placement during the treatment.
That area has remained NED ever since.
Then in January 2012, we discovered 8 lesions in my brain. The largest were in the R frontal lobe and the other in my brain stem.
I was asymptomatic at the time, but they immediately put me on a high dose of decadron (steroid) to combat any swelling, from the disease and the treatment.
I had 15 days of WBR, lost my hair globally after about 5 days.
Good news is that my brain has remained NED ever since the first 1-month post WBR brain MRI.
The decadron is a very strong drug with all kinds of weird side effects, and it took about a month to gradually ween off of it. And in the interest of full disclosure, I feel like I have some residual memory deficits as a result of the WBR and my ears are always a little congested, but Brain is NED and that's what's important.
As for my liver, I've had mets there since my primary dx in 2002.
So, for the majority of the past 10 years I have been wrestling with mets that respond to systemic treatment, but then recurred. In Jan 2005, I had RFA, but that procedure was not completely successful, leaving some viable disease, which then fully recurred & led to a liver resection of the R lobe in Dec 2005. I was NED in the remaining L lobe for ~3 years, but the disease eventually recurred.
Next was chemoembolization with Adriamycin - chemo delivered directly into the liver via the femoral vein in June 2010. Thus far my liver has remained NED.
But keep in mind I've also remained on systemic treatment ever since.
Right now I'm pleased to say through a combination of modalities and systemic treatment I have been NED in brain & body since June 2012. This is the first time I have been NED since 2005.
Keeping fingers crossed that NED will stay with me for a long long long possibly forever time, but just so happy with the resilience of my body to tolerate & still respond to so much treatment over 10 years.
It's not an easy road, but please always remember NED can still be possible.
I hope something I've shared with you is helpful.
Know that you are in my and all of our prayers, for you and your mom.
Stay strong, and when you can't, lean hard.
We are all here for you~
Keep the Faith!
Jessica
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