Hi
I'm wondering what people's experiences are with SRS for brain mets. My dad has stage 4 lung cancer which has spread to surrounding lymph nodes and he has about 5 mets in the brain. He started immunotherapy but this meant reducing his steroids and a CT scan of his brain last Wednesday showed the swelling around the cancer in the temporal lobe had increased and he also had increased swelling around the cancer in his frontal lobe. He has been put onto a higher dose of steroids but these do not seem to have worked as well as they did previously, even though he is on a higher dose. He is due his second cycle of immunotherapy this Thursday but I think it is highly unlikely he will be given this as clearly the swelling has not subsided.
Previously the oncologist has said SRS was not an option for Dad as he needed all of the cancer treating with immunotherapy. But if he isn't fit enough for the immunotherapy due to the brain swelling I wonder if SRS may now be an option as I believe with the brain mets dealt with he would then be fit enough for the immunotherapy. Of course the worry is that the SRS can cause swelling and as he is already struggling with that it may not be an option for him.
I guess I'm really just looking to see what experiences others have who have been or are in a similar situation to my Dad?
I'm also having trouble getting him to eat and drink so any tips on what to give him would be greatly appreciated.
Many thanks in advance.
Andrea.
Hi Andrea
I hope you don't mind me popping in here as I'm not a member of this group but I noticed that your post hadn't had any response.
I've found this information for you that Macmillan have produced about stereotactic radiosurgery (SRS) and, although it's not the same as hearing someone's first hand experience, hopefully it'll give you some insight into it's use.
If you type 'stereotactic radiosurgery' into the search bar in this group you'll find previous posts which mention this treatment and you could have a read through these and respond to any of the more recent ones if you want to ask the poster any further questions.
I'm 'tagging' buttercup01 into my reply to you as she's the Community Champion for this group and has had a form of SRS called CyberKnife radiotherapy. Hopefully she'll be able to answer your questions about what to expect.
It’s not uncommon for people's appetite to change during treatment but you could try encouraging your dad to eat small meals often rather than his normal size meals.
x
Thanks for tagging me latchbrook must've missed the post. Finding it hard to navigate the new site!
Hi , I had cyberknife 3 x 20 min sessions over 3 days for a brain met in 2013. I also know of ppl who've had gammaknife, eg , also for a brain met. Both of ours are from kidney cancer.
Since having the cyberknife, I've been on Pazopanib, a TKI, to control anything else that might pop up. The area zapped by the cyberknife is a dead area n hasn't caused me further problems. It's monitored by MRI scans.
Anything else I can help with, do ask
My appetite's up n down btw. I'm on low dose steroids 0.5mg/ day n the Pazopanib affects my tastebuds, so betwix n between I have to have breaks every so often when everything starts to taste of cardboard.
Btw, the cyberknife is painless and is very finely pinpointed radiowaves. Altho its called radiotherapy, it's not like the usual radiotherapy, nor is it a knife. Bit of a misnomer really. I'd throughly recommend it, if you're offered it.
Hi to you both. Thank you for responding to my post. I think what I’m most worried about is the fact that my dad already has a lot of swelling in the brain and I believe the SRS causes swelling so this might be why they aren’t keen to do it but then I’m not sure how they will control the swelling to an extent to allow immunotherapy
I know had immunotheraphy after her gammaknife, if that helps. How did you get on with it ?
Thank you for that. Unfortunately it seems it’s too late for any treatment. We saw the oncologist today and she says the cancer has grown in the brain and the swelling has increased and that there is nothing more they can do and he only has weeks to live. I’m finding it hard to accept that and can’t believe there aren’t still options for my dad but I guess I have to trust in the oncologist although that is so hard to do
I'm so sorry to hear this @bobbinsa.
Is it worth you getting a second opinion or don't you want to put your dad through that?
My mum was diagnosed with cancer of the unknown primary and she's got Mets on the brain, she had radiotherapy and after a few weeks she started sleeping alot and eating hardly anything, I took mum to hospital where they did scans and said that the cancer has grown and her tumour has grown and there's nothing more they can do, I'm sure there must be something they can do? I'm seeking a second opinion as I know mum wants to fight this, it's really hard to see her go through this and the oncologist saying there's nothing else they can do!
Hi Micky,
Sorry to hear you're having such a tough time. I have experience of this having had brain surgery twice. Can I suggest as a start it will be worth you writing a new thread on this forum as the posts above are very old and it's not a forum that is often visited, being quite rare. Once you've done that even if it's just repeated I can maybe help in some way.
Best wishes
Martin
Hi mnb62 thanks for your reply, I was looking for some kind of help or if there's a treatment out there for my mum, it was the first time I've come on here and basically haven't got the time to go from one forum to the next as I'm busy trying to get mum some sort of treatment or help, thanks anyway. Takecare
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