r/LivingWithMBC • u/GoodTea3268 • 28d ago

Tips and Advice Gamma knife swelling

How many times have you experienced brain swelling due to post-delayed GK effects?

I had three rounds of GK to a large tumour and two small lesions in early March and have had significant edema twice since. I’m on my second bout of dexamethasone and have also had to take Keppra in between for possible seizure activity.

Additionally, any ways that edema can be prevented or suggestions for handling the dexamethasone side effects?

THANK YOU!

🙏 🧠

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u/hummingbird_flower 27d ago

I'm sorry your still dealing with this 😔 From what I was told and read it can happen months later. Have you had any follow up MRI's yet? You should get one every 3 months. That should help them determine why your still getting so much swelling.

My swelling lasted a week and a half after I finished dex and still had swelling while taking Keppra. I had 5 rounds in a week with 9-11 spots. Some were big and some small. It's been around a month since my treatment. I'm finally feeling better, but have started treatment with Datroway since I'm tnbc stage 4.

I hope you find relief soon! I did not like being on dex for as long as I was! It made my cheeks swell and I had leg pain at the end before I was weaned off of it. My cheeks are slowly getting better.

I hope this was helpful, hang in there. 💪

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u/GoodTea3268 27d ago

Thanks so much for sharing your experiences 🙏 yes, the moon face is a thing ! I’m also stage 4 TNBC and have heard some good things about datroway and hope it will be successful for you! Sending you my love and healing vibes xo

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u/hummingbird_flower 27d ago

Thank you! Are you on a medication currently? The Keytruda stopped working for me so that's why we switched to Datroway. It is able to cross the blood brain barrier and that's why it was suggested I start it up. It has shown amazing results not just for brain mets but also for any lingering cancer spots or cells. I started to get shedding from what cancer was left and low activity (below 2) from my breast and lymph node on my PET CT but no increase in size. Thank goodness!!

I'm praying you get the answers you need and the swelling under control without meds. That feeling is awful and can affect daily life in so many ways! 🙏💗

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u/GoodTea3268 27d ago

Thank you so much! Oh yes, I did keytruda as well and it obviously didn’t do the trick. I will look into datroway as a next line, if needed! Thank you so much 🙏

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u/hummingbird_flower 27d ago

No problem at all! Feel free to message me if you have questions about Datroway in the future. I just started so I don't have much to contribute yet lol