Gamma Knife

FormerMember
FormerMember
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I've got renal cancer in a number of sites and one small met in the brain. I was lucky enough to have gamma knife in November 2019. 
An MRI scan a few weeks ago revealed that nothing has changed. I was under the impression it would be "ablated"?

I'm taking Kepra and have had no proper seizures but a couple of partial ones in the past few months, just get very sweaty and slightly confused but able to get home OK (was on a walk on both occasions).

Is it possible they missed the tumour? I'd be interested to hear if this is possible as I've looked at some other experiences here where they have zapped several in one go.

  • Hi and a very warm welcome to the online community

    I can't help with your questions but noticed that your post hadn't had any responses yet.

    I'm tagging into my reply to you as she has kidney cancer with secondary brain mets, and is also this group's Community Champion, so should be able to point you in the right direction if she can't answer your questions.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • Thanks

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Hi , I had cyberknife on my brain mets in 2013.

    had gammaknife last year, followed by a combo of immunotheraphy., with remarkable results.

    I've,tagged her into this reply in the hopes she can give u more info 

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Having gamma knife surgery next week. Anyone undergoing treatments now would be nice to talk with. Interested in the effects? Or does vommitting, nauseous, Headaches and perhaps stroke like symptoms. Knowing! as Phil said will prepare me! Thank you Pete

  • Hi Pete

    Unfortunately I don't have any experience of gamma knife surgery to share with you but I noticed that you haven't 'joined' the group yet. Don't worry, you haven't done anything wrong but joining means that you could start your own discussion and you also get email notifications telling you when people have posted.

    To join just go to the top of the page and click on 'join this group' and that's it. You can then introduce yourself and post your question by selecting 'start a discussion'. You are more likely to get replies if you start your own post.

    When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

    x

    Community Champion Badge

     "Never regret a day in your life, good days give you happiness, bad days give you experience"

  • FormerMember
    FormerMember in reply to bellsndy7

    Hi Pete,

    I think it was worse for my wife than for me tbh! She witnessed the discomfort when they place the frame on my head and there's a few injections as they tighten it up.  It's not pleasant but compared to have a canular put in not too bad really and is quickly sorted. They tighten it up and at this point I was starting to think this is *really* tight surely not another turn! But that's it really all done for the day regarding nerves I'd say. There is plenty of time for Hanibal Lecter type pics here due to the waiting! As you are wearing the frame you have to go everywhere in a wheelchair, it's irritating but they don't want anyone falling as that would be horrendous while having the frame on your head.

    A while later (it was busy there were 3 of us on the day) I had an MRI & the chap there was brill with the line (my pet hate used to be canula insertion as they often have issues). This was fine, you'll have had this already. And then another wait and then DREADED zap machine. What can I say, you'll possibly fall asleep! Far less noisy than the MRI.

    I thought it was all over then but oh no - they gave me a soluble pain killer to take and took off the frame which was weird as I'd almost got used to the frame. They warned I would get a headache but oh boy, I got a headache! I was left in a dark room for maybe 45 mins and not long after this we walked back to where we were staying in London (slowly) but with a sense of relief it was all over.

    I'd go through it again at the drop of a hat if they have to have another go at it but I am hoping they did what they needed to do. I was told it would be ablated but on the last scan it was the same. Swelling is all gone so we just have to hope this one is sorted. The success rate for this is amazing so it's great you are getting it.

    Good luck and I am sure my experience is normal, the name makes it more of a big deal! We are lucky to have such an amazing bit of kit and to have the NHS. I only have one tumour in the brain so I would guess if you have more, the scan and zap might be longer but those bits are an opportunity to snooze! No need to worry about that aspect.

    All the best

    Phil

  • Hi @bellandy7, Pete

    @irishrambling had gammaknife for a,secondary kidney cancer brain met

    Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
  • Hello Phil

    Thank you very much, that is what I was looking for as I feel at present I have more questions than answers at the moment. Always good to get it from the patients perspective and reassuring. These testimonials are always very welcome.

    I wish you well in your treatment and would be interested to hear if you had any of the side affects mentioned ie sickness, bleed, seizures.  

    best wishes

    Peter

  • FormerMember
    FormerMember in reply to bellsndy7

    Hi Peter,

    Well yes but these were probably down to the tumour. None of the drama of the full on seizures anymore but I've probably had about 5 or 6 partial ones. These often are on a walk when a couple of times I got a bit confused and perspired a heck of a lot. Weird but once we found out what it was less scary I suppose. We originally thought it was down to immunotherapy. Not had one for a month or two maybe now and last MRI showed no swelling (which caused the mal grand) so touch wood, it might be OK.

    Like I say, we walked there any back to the UCLH and I think it was a couple of miles without problems. Jackie insisted we hooked up arms on the way back which was probably a good idea but we took it easy. I took the next day off work and was back the day after that.

    Good luck, it's obviously not enjoyable but done and dusted in a day for 97% of the folk that get it.

    Phil

  • FormerMember
    FormerMember in reply to bellsndy7

    The frame is mildly uncomfortable but bearable

    you shouldn’t lose your hair or have nausea really but it does depend on where the tumour is. You head is numb got at least a week so be careful not to bump it. I also found my head felt very cold afterwards and ended up wearing a woolly hat !