gamma knife

[pkw]

i've just been diagnosed with brain mets, gamma knife 11/2. i have hope but am terrified. no prior symptoms. things were going so well. now can't drive or write. any words of encouragement? other than this was NED up to last week.

love pk

[Sandy H]

PK Steph can help you with this. She had gamma knife last Dec. and is doing fine. She even posted pictures and went through step by step of how the procedure is done so it would help others that were terrified. I am sure she will respond to your post soon. Good luck and hugs, Sandy

[mamacze]

PK,
Steph is a brain mets sage; Christine too. I am sure they will post soon; stay with us; they have had such incredible journey's with brain mets, they will have alot of encouragement for you.
Love Kim from CT

As many know by now I was diagnosed 5.5 years ago with stage 3b bc with her2+++. After one year I had a single lesion brain met that was 3 cm. I was treated with a craniotomy and radiation to the brain. I got another brain met a year later but very tiny 7mm so I got another craniotomy. Two years later I had a third met and got gamma knife. I have been NED else where. I have been on Herceptin for one year. The gamma knife is non-invasive and a one day proceedure. It does not hurt and works over a period of a couple of months. The only down side I have had with the gamma knife is scar tissue. When I get my brain MRI's every 90 days they can never tell if it is another brain met or scar tissue. But that has been the only down side. It is a very easy proceedure and you feel fine. No side effects, no drugs, no cuts- it is actually pretty easy. Are you getting WBR also?

[StephN]

Dear Sister -
Mets are scary anywhere, but the brain seems to be the worst in our minds. I am not the only other one here on this board to do well with brain mets. There is Lisa who had whole brain radiation this year and is doing well now.

Here is a link to one of my posts just after I had my Gamma Knife this past January.
http://www.her2support.org/vbulletin...ad.php?t=19317

Sorry to hear that you are another of us who had NO symptoms, yet have the met/s to brain. You do have a better chance of beating it when you are NED elsewhere. I had been NED for about 2.5 years when we figure the mets got going in my case. And I am still NED from ears down and nothing more so far in my brain.

Don't understand why you can't write - do you mean with a pen? I know if they feel there is risk of seizure due to where the met/s are you may be restricted from driving. I fortunately was not restricted even though one met was about one inch in diameter.
The steroid decadron was murder on me. REALLY laid me low. Weakened me a lot and I have spent all year building back up after that.

Hope the messages here will be of some comfort. The waiting is the hardest - I had to wait two weeks to get in myself. And the Decadron contributes to the 'antsy' feeling! Have a good engrossing book on hand for the sleepless nights.
Stay with us and we will get through this together!

[Kim in CA]

Hi,

I too just had Gammknife in August. It had only been 11 months since my last MRI, and I wasn't having any symptoms, but I knew our insurance would be changing so I asked the doc if we could do an MRI because I didn't want to worry about any authorization problems with a new insurance. Well, lo and behold thar she was, an 8mm little bugger just hangin out in my right occipital lobe! By the time I got a referral to UCSF and actually had the Gammaknife, one month had passed and the tumor had grown another 3mm.

The procedure itself wasn't bad at all, just took a long time to get set up. I also asked for extra anesthetic at the points where the frame is attached to your head because I knew from previous experience that I was hard to numb.

Right after I was all done I had my husband take me out to get something to eat and I felt fine. The very next week I was out conditioning my horse for an endurance ride and never experienced any problems at all.

I think the hardest part has been waiting for my follow up MRI which I will have in November. I just try to stay super busy, so I don't dwell on all the what-ifs and just cherish each and every day!

You can do this, especially with all the expert/brain mets survivors on this board, you will always have lots of support. Don't know what I would do if I didn't have all the support and wisdom from so many here.

Don't know if you ever saw the movie with Bill Murray called "What About Bob", but I always think about that when I have to do something that's hard and I laugh to myself and think Baby Steps!, Baby Steps! Kim

pk,
I am three years, two months past my first dx with brain mets. I do have recurrant brain mets at the moment. However, in the past I have had 16 lesions treated with five seperate focalized treatments similar to Gamma Knife, over the course of 21 months.

Getting the head frame on is the 'worst' of it. But with plenty of pain meds plus some anxiety type drug, it is fairly simple to deal with.

I personally had a severe (told it was 'normal') headache after removal of the frame which lasted two hrs. Had very little, if any, after effects. If tumor is closer to surface, some hair loss is possible to area treated. But I only had this happen when I had cerebellum lesions treated with CyberKnife. Hair totally regrown.

I have stayed NED in body this whole time, after having tx for mets to mediastinum/spot on lung/spot on pelvis during the same time frame as first brain mets dx. Without ANY further tx.

Hope our combined stories give you something hopeful to go on..... welcome.
hugs,
patty

[pkw]

thank you all for the speedy deliverance of love and suport. I'll be in touch. God Bless you all!

pkw