experience with brain mets?
 

Just had an MRI after pet scans showed stable but tumor markers doubled, accompanied by Morning headaches and some dizziness... so my question is, has anyone survived any length of time with brain mets? I'm truly terrified..

Re: experience with brain mets?
 

Debsing, First, it all sounds so much scarier than it needs to. There are just so many treatments out there now.
I had 2 mets to cerebellum but because I had kidney cancer and they didn't appear as "normal" mets on CT, I had a craniotomy to biopsy and remove them followed by cyberknife to clean up after. I was on steroids (dexamethasone). before, during and after it all. I had a love hate relationship with the dex. It made me feel better but sleep was elusive. The weaning off the dex was not fun. The surgery was not as bad as anticipated up and about pretty quickly and the cyber after was not difficult at all. As far as survival, I plan on being around a long time even if they come back I know the treatments are all doable and mostly scary because it's the brain. I have read other people who had brain mets once, years ago and going strong. My comfort comes from knowing that cyberknife can be done over and over and I will have MRIS every 3 mos. so will probably catch anything early.
Also there is intrathecal herceptin now that I don't know much about but sounds very promising.
Keep your head about you (pun intended) and explore with your drs. the best action for your situation and meet it head on. Pun again?!?!?
Hugs and prayers, Cathy

Re: experience with brain mets?
 

Thank you so much for your help/input!

Re: experience with brain mets?
 

Debsing,
Try not to panic until you know what you are dealing with. If you do have brain mets, you will find many women on this site who can provide advice and inspiration. Let us know what happens at your next doctor's appointment.

Re: experience with brain mets?
 

The founder of this group, Christine, had successfully treated her brain mets more than 15 years ago. She passed away not long ago and we sure miss both her and her husband， Joe， who had designed this platform and been the Webmaster for many years. Joe had passed away few years ago shortly after being diagnosed with late stage lung cancer. Their daughter, Deborah, is now overseeing this website.

StephN has also been a long-time survivor of brain mets since 2005 ... http://her2support.org/vbulletin/sho...163#post306163

Re: experience with brain mets?
 

Geesh I look at the years and can't believe how time flies!

Re: experience with brain mets?
 

Yes, Debsing, I am still here after being treated for brain mets. One thing though - I had NO symptoms. Since I was already stage IV the annual brain MRI picked up the mets.

Look up JoanM and BarbH. They also had mets and have had nothing come back after being treated.

Let us know how the MRI goes. Bet you just have early allergies or something else benign!