How many brain mets members and how long with them - Roll call

dorimak

I realize there is a dedicated topic for brain mets sisters, however there are a lot of detailed discussions so hard to get a sense of how many there are. Sadly there are mentions that many of the members are no longer with us. I have just been diagnosed with brain mets and will have SRS (Gamma) radiation. I would love to know:

• For those with them, how long have you been living with them? Survival stats on Google are not encouraging so looking for some hope
• What was the extent of brain mets and what treatment have you done?
• What is the extent of disease outside of your brain (this apparently is a factor for survival)?
• If not already included in your signature, how long have you been living with MBC?

AllyBee

Great topic

I'm relatively new here too.

One 2cm brain met treated with crainiotmy only 6 months ago. Also had a axillary lymph node light up on pet scan even after axillary node dissection, chemo and radiation. So far have done gemcitabine and carboplatin since stage IV diagnosis.

I'm currently NED, just something suspicious happening with my teeth/jaw (maybe not be cancer related)

Planning on being around for a long time.

Goodie16

• For those with them, how long have you been living with them? Survival stats on Google are not encouraging so looking for some hope: STAY OFF GOOGLE. I was diagnosed with a solitary brain met in February 2015. It was removed via craniotomy and I had gamma knife radiation to the tumor bed a month later. My brain and body have been NED since that time. Next scans are in February.
• What was the extent of brain mets and what treatment have you done?: See above. In addition I take Arimidex daily and have since 2016 (I was on tamoxifen + lupron prior to that).
• What is the extent of disease outside of your brain (this apparently is a factor for survival)?: None. My only met site was, and continues to be, in my brain. Initial stage diagnoses in 2014 was 1A. No lymph nodes involved.
• If not already included in your signature, how long have you been living with MBC?: Since February 2015

I hope you find my answers helpful. There are great resources...and most importantly...lots of hope here!

illimae

• 15 months with brain mets do far (dxd 10/17)
• At initial dx of Brain mets (10/17), I had 5 subcentemeter lesions in the cerebellum, treatment was gamma knife radiation and follow up MRI’s showed improvement. In April 2018, all previous lesions had resolved but 5 more (also small, largest was 4 mm) were found in my cerebellum and right/left frontal lobes, treated with gamma again. Currently, a single stable remnant and nothing new since then.
• Elsewhere in the body I am stable with a few bone mets.
• Just over 2 years with stage IV de novo and doing well.

Erkipper

Diagnosed 2 months ago (12/3/18) and had 4 tumors in the brain. Had gamma knife procedure. Had my first follow up MRI on Monday, they have all reduced in size and no new lesions have appeared. Also cancer in some lymph nodes, back to chemo on Kadcyla. Just completed my 2nd cycle on Tuesday.