Brain met ??? Anyone have advice
 

Hi all
I have not need to post for a while we have been doing so well for my wife from stage iv at diagnosis inApril 2016 to NED last June 2018. Then scans last week showed “possible” brain met. Now all the fear has come straight back just like it was Initially when diagnosed.
We met radioncologist today to discuss grammar knife once an mri is completed
Can anyone advise if they have been in the same position ? Is it likely the mri will find more ?
They are saying more than 20 Mets means while brain radiation ??

Any advice or positive experiences would be appreciated

Thanks

Re: Brain met ??? Anyone have advice
 

Hi Benk-
I have no experience with possible brain mets but I am certain someone on the site while chime in soon with advice.

Try to stay strong and remain positive. Sending positive energy and good thoughts your way.

Re: Brain met ??? Anyone have advice
 

Hi Benk,
Really sorry to hear this. There have been many women here with experience in this area and I am sure some will reply to this thread. You could also search the site for past discussions. Hope the MRI goes well, but try to remember the diagnosis may not be as scary as I am sure it feels right now.
Best wishes to you and your wife.... Pam

Re: Brain met ??? Anyone have advice
 

Hi Donna and Pam
Thanks for your thoughts and prayers
I am hoping it’s euther not cancer ( although the oncologists are confident it is )
And or it’s only one spot.
I have searched ‘‘tis site many times in the last few nights and found some useful information.
I had so hoped we would go as Ned for awhile.

Re: Brain met ??? Anyone have advice
 

Hi Benk, so sorry you and your wife may be facing this. I know we've had a few members who can help you although the site has been a little quieter than usual lately. Sending good wishes and please keep us posted.

Re: Brain met ??? Anyone have advice
 

Benk , HAVE a appointment Tues.Oct 23 an MRI that just didnt feel right to the Onc.
Waited 6 weeks for repeat.. I guess I am next in line. They thought mini strokes
maybe at best. Just couldn't tell. BY THE WAY TYPE IN BRAIN METS in search box.
Some one posted about getting a brain MRI once a year.The pet scan only goes to the base of skull I think. So I took that Idea and ran with it. It may have saved me life with an early start.

Re: Brain met ??? Anyone have advice
 

Thanks Tricia
Ariana I have discovered through both this site and the recent discussions with oncologist and radio onc that a ct or other tests are not as clear a “ picture “ as an mri so as you suggest I think they should be done constantly.

We did mri today so now comes the waiting and we should here in the next few days I guess.
I have been investigating cannabis oil from the outset of disease and I think I will peruse that for my wife should this be a less than positive result.

Thanks again

Re: Brain met ??? Anyone have advice
 

Always good to look into all the options and knowledge is always a good thing!

Re: Brain met ??? Anyone have advice
 

Hi
Update on my wife So mri confirms 1 brain met at 10mm x 18mm
Gamma knife booked for the the 7th of January
My wife seems even more tired than usual not sure why?

Re: Brain met ??? Anyone have advice
 

Hi Benk,
While it is hard to get your suspicions confirmed, at least there is only one and you now have a treatment plan. People have had great results from gamma knife. We'll be thinking of your wife on January 7.
Best wishes.... Pam

Re: Brain met ??? Anyone have advice
 

Thanks Pam

Re: Brain met ??? Anyone have advice
 

Hello Benk. I had gamma knife on two brain mets way back in Jan of 2005. One was rather large and almost at the gamma knife limit and the other quite small. Since that time I have not had any more brain mets or any active disease below my ears. The gamma knife was quite tolerable as it is done from the exterior. They let me bring any CD's I wanted to play to help me relax. Ask about music if they do not mention it. Some of my fav music was very helpful! I chose some Celtic spirit type music. The rather ethereal quality was right in line with the brain zapping.

Your wife should do quite well after her GK procedure. I was out driving the next day. All the best for this holiday season now that you have this plan established.

Re: Brain met ??? Anyone have advice
 

Hi - very sorry you're dealing with this. Everyone's case is different, but I think you have good reason to hope.

Three years after my diagnosis (Stage IV), in Spring 2015, I was found to have a sizable met in my cerebellum. Had an 8-hour surgery at the Siteman Cancer Center at Barnes (St Louis) to resect it and then Gamma Knife radiation treatment. The combination seems to have gotten the whole thing: at least, I've had no brain mets since.

Gamma knife is amazing. They can adjust the hundreds of killer beams to the exact shape of the lesion/s with no impact on neighboring tissue. Ideal for brains. Side effects for me were an unpleasant background nausea that lingered for months, contrary to what they told me was normal, but it eventually disappeared. The treatment isn't a pleasant process to go through because they have to *bolt* a frame to your head in order to precisely aim the rays and you have to lie in the (silent) machine for about an hour unmoving in this thing. The last 15 minutes I found especially hard. They take it off immediately afterward but it's a small trauma - well worth it, of course. Someone here suggested bringing their own music - very good idea!

I should clarify that I went on Kadcyla several months later due to a general progression (right axilla, etc.). That was far harder than the Gamma Knife due to side effects, but it knocked out the progression and although I went back on Herceptin about six months later (due to low platelets) I've had no progressions since. I think the brain surgery may have been fortuitous because, while Kadcyla can apparently breach the BBB, it seemed more certain if the BBB is already breached by surgery. Anyway, Gamma Knife plus Kadcyla has extended my survival by three years so far and all scans are still clear, so I'm definitely a fan!

I'd guess you've figured this out already, but I'd suggest avoiding WBRT (whole brain radiation therapy) if you possibly can because it can have profound cognitive effects down the road. And it seems we generally can. I believe that Gamma knife is now the standard of care where there is one or just a few lesions that can be zapped by it. And if another lesion appears, it can be zapped, too. Leptomeningeal disease is the worry I have now, but after three years I'm more optimistic.

Warm wishes in all this!

Re: Brain met ??? Anyone have advice
 

She's more tired than usual because this stupid disease is exhausting! I had a single brain met zapped via gamma knife in 2008. Gone girl. But I'm still here. You don't say if your wife is still on herceptin?

Re: Brain met ??? Anyone have advice
 

Hi all
Sorry I have not posted to your responses in a little while
We had the gamma knife done back on 7th of January and the biggest
Side effect apart from her face swelling from the frame was some nusea and
Mild headaches. We now have to wait until April for follow up mri to see any success. To answer your question so cal girl she is on herceptin and perjeta very three weeks with tamoxifen as pat of the regime.
Thank you for all the well wishes I will update this thread as soon as we get some results

Regards
Ben

Re: Brain met ??? Anyone have advice
 

Hi all
As a matter of update we had scans back in March to check results of the gamma knife , which ended being done on two spots with the second being precautionary as the neuron oncologist not being positive it was disease but opting todo it as a precaution.
The results where good with very little of the original site left and what was left being considered as scar tissue.
We have another check up mri due this month.
Thanks again for all the advise and support I wish everybody well.

Re: Brain met ??? Anyone have advice
 

Thanks for the update BenK and hoping for good results from the upcoming scan.

Re: Brain met ??? Anyone have advice
 

Glad to hear things are going well - good luck with the next scan.