Dear Kim, I'm glad to hear that gamma knife is scheduled, but a word of REALLY IMPORTANT WARNING!!!!!
My husband had gamma knife, apparently successfully - he certainly sailed through the procedure - BUT, things went wrong afterwards. I'll tell you what they were, in CASE the same thing happens your end, and you can avoid what happened to my husband.
My husband had around 9 mets gamma'ed in all - three at c 1 cm, and then some tiddlers. When he was DX with BM in August, there was some edema around the main mets, so he was put on 4 mg dex. He lived on that until about ten days after the gamma knife treatment, when it was reduced to 2 mg. Simultaneously, he was on his third cycle of Sutent by then, and we were getting the feeling it wasn't working any more, unlike the first two cycles. It jsut felt 'different'. I say this because, IF Sutent HAD been getting through the blood brain barrier and helping to keep the brain mets down, then losing its efficacy may have cvontributed to the final grim outcome.
He had the gamma knife on 23rd October. Felt fine, as I said, and reduced his dex dose on advice to 2 mg. On 10th November he went for a 'Sutent-scan', and collapsed and had two major 'grand mal' seizures, (THANK GOD IN THE HOSPITAL ITSELF!!!!!) which hospitalised him for 36 hours while they put him on anti-convulsants and l6 mg dex. He, amazingly, did incredibly well, and walked out of the hospital apparently 'fine'. He had to take anti-convulsoin meds (phenytoin, which I think is dilutin in the US), as well as dex. The dex came down to 8mg, then 6mg and then back to 4mg. We thought he was 'safe again'.
Then the original BM symptoms re-started - visual disturbances and headaches. We spoke to the gamma knife centre on 24th November (me having emailed them about the grandmals) and were told that, as we had been before, that gamma-knifed mets can sometimes swell as they die, appearning larger in size and increasing edema (and symptoms!), but that this is temporary. Again, we thought all was well.
BUT, during that week, he lost his appetite, started to get nauseous, and increasingly sleepy. By Friday evening he was vomiting green bile (having been well enough to go to the opticians that morning, however), and sleeping a lot. Because it was the w/e all I could do was phone the emergency cover line doc, who was very good, and phoned the onc department at the hospital, who said, double the dex to 8mg, which we did, and book an MRI head scan for Monday, which we did.
On Sunday night he fitted again, only a mild seizure, but still a fit, and again in the night. By the time I got him to the hospital for his Monday morning scan he was semi-conscious and had to be wheelchaired in. He was given an MRI, the onc pronounced progression of mets and edema (one met had quadrupled in size to 4 cm), and he was put on DNR (Do Not Resuccitate). He was hospitalised on l6 mg intravenous dex, phenytoin and another anti-convulsant, plus IV diazapam to relax him after fitting again, which didn't help. He fitted every twenty minutes for a minute, for several days. I finally got him home a week later, in an ambulence, under nothing more than palliative care, as his onc said he was beyond his treatment any more. He died two weeks later.
I say this not to scare you, though it doubtless will, I'm sorry, but to warn you DO NOT assume that gamma knife is 'safe' - we will never now know whether my husband DID have progression (growth) or radiation necrosis (which CAN happen after gamma knife not jsut whole brain - and remember, too, RCC is radio-resistant, so they really have to blast the met, and that can affect, maybe the healthy tissue around, causing the radiation necrosis.)
Radiation necrosis is bad news, as in the end they have to get the necrotic lump out physically, which is not even possible (I never found out whether it would have been for my husband, and like to hope the onc had nous enough to check, but who knows!), or they can treat it a little with anti-coagulant drugs, some anti-tumour drugs, and also hyperbaric oxygen treatment.
Howevber, it IS very rare, so that's the good news!
My message is simple though - do NOT assume 'all is well' post-gamma, and if you are on dex, don't be too ambitious to reduce it, though I know everyone is always desperate to do so! If there are ANY breakthrough symptoms, or that nausea/sleepiness effect, get PROMPT action. And INSIST on a scan, even if the gamma knife centre says its not necessary. ONLY a PET scan will reveal whether a met is growing or dying, whether there is progression of the tumour, or radiation necrosis.
Edema kills - keep the dex high. At least, in the USA, the docs will dose dex way high, over 40 mg, and easily 24-32mg. Over here, for reasons unknown to me, the UK dosing max is l6 mg.
Also, I found out, belatedly, that IV dex is far more powerful than oral dex, and so when my husband went across to oral l6mg at home he was NOT getting the hospital dose! Also, anticonvulsant drugs like phenytoin dilute the effect of dex, so you do NOT get the full anti-edema power of it.
I'm sorry to be so scary, but forewarned is forearmed. I don't know whether I could have changed the final outcome for my husband, but I DO KNOW that we were NEVER ADEQUATELY WARNED about just how dangerous edema and symptom breakthrough and nausea/drowsiness could be. I watched my husband start to die over the weekend, and didn't realise it was happening....I hadn't been warned.
So, that's my mission now - to warn, so that what happened to us, can't happen to others for lack of knowing, at least! And I wish, with all my heart, that I was reading this about someone else, not my husband, so I could learn from their situation - mean of me, I know, but there it is...
All the VERY best to you -and gamma knife is usually very successful, and I've heard of it completely getting rid of mets, and they don't come back. SO I HOPE this is what you will get.
Best, Julie