Gamma knife treatment

[LFlynn91]

hi there
my dad is having gamma knife radio surgery next week for brain metastases
he is understandably very nervous
does anyone have any experience or words of wisdom?
thank you

Hi
I had it after brain surgery for a brain met (melanoma) The actual radiotherapy is very straightforward. Quite quick, a bit claustrophobic under the mask. But not to bad, if he does feel very nervous ask his dr/gp for a short course of something like lorazepam to take half an hour before. A small dose helps but doesn’t make you feel out of it.
Im probably not the best comparison as a had it 3 weeks after surgery so I was already quite inflamed.
I felt very tired a few weeks after and lost a patch of hair. I did have a few focal seizures but I think I was still swollen from surgery.
I was already on anti seizure medication.
A bit of fresh air and a short walk every day, and be prepared he might be a bit out of it a few weeks later.

Does he live with anyone or on his own?
I am still clear two years later, I had surgery, SRT and then immunotherapy.

your reply is so helpful @Wells37 thank you so much.
so my dads background is primary of oesophagus which in last 2 weeks has spread to brain. Apparently super rare and only happens to around 1%.
all plans in place now, his treatment is next Thursday. They plan to do one procedure only but want to keep him in the mask for 3 hours so have advised it will be pretty intense for him!
I’m super scared about seizures as you have mentioned, did you call an ambulance and go to hospital when you had yours? So far there seems to be no plan for anti seizure medication but they are increasing his dexamethasone.
he lives with my mum but I’m around almost everyday.

May I ask what you mean by a bit out of it? Do you mean tired or worsened symptoms for a while?

so glad you are still clear! Do you feel you have a good quality of life?

I’ve just seen your other thread. Some esophageal cancers respond to immunotherapy and the radiotherapy brings down the blood brain barrier for a bit. So it can be particularly effective afterwards.
Maybe it’s not suitable in your dad’s circumstances and I’m sure they would have offered it if it was. But it can’t hurt asking.

I had mine over 3 days. I would definitely ask for something to take the edge off.
My seizures have always been focal seizures and I get a warning in my hand first. The left side of my body going stiff and a bit contorted and have mostly been under 2 minutes and I don’t loose consciousness . I got admitted a few times. But then they came up with a plan of if I had one and came around quickly and didn’t loose consciousness I didn’t have go in. I have an alarm watch I can press and it calls family.
I live very near the hospital so my husband just phone the oncology helpline and took me in.
Ask them for instructions for what to do if he does have a seizure. Make sure your mum has any emergency numbers, my hospital has a dedicated oncology emergency number.
Yes a have very good quality of life, I still get side effects but a lot of them are from the immunotherapy. I’m in my 40s I exercise regularly at home and the gym. Building up the exercise has been a slow process. I find noisy environments difficult sometimes and I get a tight head. unfortunately I can’t drive though, but I get on with things & and am taking advantage of my free bus pass! We went on holiday this summer too.
Everyone is so different though, encourage him to little things every day. I started walking to the end of the road and went a bit further every day. I definitely needed a lot of sleep for those first 6 to 8 weeks. Really concentrate on a good diet, lots of variety and protein and really good hydration.

if people offer to help be very specific at what you want them to do, send them a shopping list or ask them cook meals for the freezer to take the pressure of your mum.

Look to see if you have a Maggies centre near you xx

My very nervous DH had it (mets to brain from ling) he took the meds and was fine, he never had a seizure with it, though was very tired but the steroids helped that !

Hi @Wells37 again this is so helpful!
im a paramedic so I think the seizure but was scaring me in terms of what to do. Easier when you have an ambulance full of kit.
im glad to hear your seizures weren’t too bad and all very good points to ask about a plan if it happens.
And your quality of life sounds wonderful, this is so reassuring. Like you say the importance of nutrition and exercise is something I really want dad to be aware of and I will help him with that.
what was your original prognosis if you were told and how long have you been ok for now?
Sorry hope I’m not upsetting you xx

Thank you @notapizzaeater how is your husband now? Xx

Unfortunately the lung cancer got him but he had a brain scan the week before he died (18 months after the treatment) and the brain mets hadn’t returned.

I’m so sorry to hear this @notapizzaeater sending you my love.
was lung his primary? Xx

Yes, non smokers lung cancer 😭

It’s a long story but here’s the thread I started 2 years ago in a&e. My diagnosis and prognosis changed at different points.
With melanoma there’s some amazing stories if you respond to immunotherapy . My consultant discharged someone who was similar to me recently. Immunotherapy is curative in some people, or they call them long responders.
To be honest I never asked directly much about prognosis and I’ve never looked at my scans. I’ve just asked questions when I know I’m doing well. But my team said my last scan was excellent news.
https://www.mumsnet.com/talk/cancer/5174601-in-ae-just-told-i-have-a-brain-tumour?utm_campaign=thread&utm_medium=app_share