4th Gamma Knife

Flossie · 08-03-2010, 08:58 AM

Hi,

I'm new to this forum but I always read with interest the immense courage and extreme positivity of the ladies on here. I am stage IV about to go and have my 4th Gamma Knife. I am currently on Lapatinib + Femara + Zometa but keep getting these pesky things in my head. Have been on lapatinib for about a year now, I dont want WBR and just wondered if anyone else has been through this so many times?? I am triple positive and am so lucky to have nothing active elsewhere.

My implant has gone hard too so needs to be replaced after my brain zapping. Bah! Sometimes it seems like it never ends.

ElaineM · 08-03-2010, 09:46 AM

You came to the right place. Hang in there and keep putting one foot in front of the other.

chrisy · 08-03-2010, 09:55 AM

HI Flossie,

Yes, there are several NED-heads here who have had multiple targeted rads to the brain. Some call it the whack-a-mole therapy. I'm sure some will see this and respond.

Hang in there!
Chris

CourtneyL · 08-03-2010, 11:31 AM

You came to the right place Flossie! There are many of us multiple time Gamma gals on this site. I think it was Hutchibk who coined the phrase "whack-a-mole" for the approach that we have taken to avoid WBR by having Gamma Knife every time these pesky brain mets pop up. I've had 11 brain mets successfully treated during two separate Gamma Knife sessions. I'm hoping that will be all of them, but you just never know. I am hopefully though, that if they do find anymore, Gamma will blast them to oblivion once again. It really is a miracle treatment.

I've had my Gamma Knife at UCSF and they have a really inspirational story posted on one of their websites about a patient, just like us who has had Gamma Knife FIVE times to treat about 60 BRAIN METS! And she is apparently doing well. If you're interested, you can read her story here:

http://strategy.ucsf.edu/stories/agg...beat-the-odds/

Good luck to you and please do not hesitate to reach out to this group for additional support. We are here for you. You can do this!

Flossie · 08-03-2010, 01:39 PM

Hi Ladies, Thank you so much for your support and replies. You are all so strong and inspirational. I dont feel so anxious and fed up anymore. Thanks for that weblink Courtney, that lady's story is amazing. 60 mets thats some going! Mind you, you're quite a girl. I notice that you have quite a brain zapping history yourself! Heres to mole whacking and NED!

I just wonder what the 'new type of chemo' the lady in the weblink is now on that targets your brain and body?? I wonder if they have it here in the UK?

CourtneyL · 08-03-2010, 01:43 PM

Flossie - I saw Hope Rugo at a seminar a while back and, although she didn't mention this patient by name specifically, I thought she might be talking about her. She said the patient who had multiple brain mets was now on a chemo called Temodar (Temozolomide) - which, as far as I know, has been FDA approved here in the US for quite a while. It is known to cross the blood brain barrier. Another one to ask your doctors about is Xeloda (Capcetabine) - also thought to cross the BBB. It works synergistically with Tykerb (Lapatinib).

Flossie · 08-03-2010, 01:55 PM

Hi Courtney, Thanks for that info. I will investigate Temodar. I did have Capecitibine last year and it did work well with the Lapatinib I have to say it kept the critters at bay for quite a while. I forgot to put it on my signature (doh am still learning!) Keep forgetting the drugs I have had, must be all that zapping!

Hope all goes well for you with your vaccine!

Jackie07 · 08-03-2010, 01:55 PM

Hi Flossie,

I don't have but one Gamma-knife (three 'shots') so far, though I might need one more sometime in the future. I did have, however, a 23-hour craniotomy exactly 20 years ago. Just thought I'd posted something to prove how 'elastic' our brain is.

Rest well. Eat well. Use your brain as much as you can. The brain cells can reconnect, regenerate, ... etc. It's a 'use it or lose' situation. So let's use it!