It seems that the I have newly discovered brain mets which caused my black out and recent hospitalization. I am so tired from the meds they have me on. They want to start brain radiation on Monday. I am on the one hand terrified and on the other resigned as this has been presented as the best option. The radiation would be given in combo with Xeloda. This would be my second go with Xeloda, as the first time it sent my liver enzymes out of whack.
I'm looking for any feedback from anyone who has had brain radiation.
I appreciate the feedback and thoughts. My whole world has been turned upside-down, again.
Thanks.
Nama
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NamasteLove
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I haven’t had radiation but I wish you all the luck in the world and hope you feel better soon xxxxxx
Oh, gosh, NamasteLove! I'm kind of catching up and just saw your post...I'm so, so sorry!!
I really don't have any feedback about the treatments, but you also ask for "thoughts" so I'll share mine...
I think that brain mets maybe aren't as bad as our gut reaction (e.g. horror -- at least that would be mine!) tells us. I feel like I've seen a lot of brain mets here recently and the radiology treatments do seem like they can be effective....but difficult, of course...
Also, part of me is glad that they have it figured out? That blackout experience that you had must have been so incredibly frightening! But now you have a plan of attack...
What this disease puts us through is truly horrible...I'm hopeful that, with treatment, things will start to look up for you...
Sending very positive energy and good vibes your way...(this might wound weird, but would you mind telling me where you live? When I say "sending good vibes" I really mean it...and need to know where to focus...(heart).
Don't have any answers since I haven't been that route yet, but I am sending into the universe lots of positive energy and prayers for you as you walk this new phase of the journey. May you be surrounded by love, light, and the collective power of this group.
I just had 2 weeks of head & neck radiation due to mets on my skull & spine growing towards my brain. They make a mask of your head & measure everything before radiation starts.
Each session took about 5-10 minutes as you lay there. You can smell the lasers as they zap your head. Other than that it was fast & easy. They will also xray your head every so often to make they're doing what they're supposed to. The radiologist makes sure you understand everything before they start the process. You can have memory loss. You will lose all your hair a couple weeks afterwards & your head will become dry & itcy.
My hair just started to fall alot so I had my kid shave it all off yesterday. I'm also very tired after radiation.
Hello Nama. I finished whole brain radiation last 4 September. 10 sessions which took about 5 minutes of zapping. You did not mention if you are having whole brain radiation or SRS. The process itself is painless but the side effects I experienced were debilitating. I lost appetite, weight and muscle mass. I was extremely fatigued and some days I still experience fatigue up to now. I too am on Xeloda. You might be prescribed Memantine which is a medicine for dementia. I take 10mg twice a day. This is to reduce loss of cognitive function. Oh you will also be given Dexamethasone during your radiation sessions. Some people feel good with it but I experienced the opposite. It gave me GERD which made me lose appetite. And yes, you will lose your hair. I lost most of mine except for a few wispy strands. Offering prayers for a successful radiation session. Maria
Did your hair come back? Is this Year September? I have neck Mets and may have in skull too really empathize those of us with aggressive bets need to prepare ourselves You were brave and are on the other end let’s hope that was the worst of it.
Dear Namaste, I have a dear friend who underwent brain radiation. When it was through I helped him turn his mask into an art piece. There are many examples on
Pinterest and the web. Just type in brain radiation mask art. Many cool images will pop up. Maybe it's something you can look forward to when this portion of your journey is done, take the emblem of that pain and truly make it your own. Cancer cannot steal our creative spirit from us!🙏❤️🙏Kate
I’ll have a STR on Tuesday to treat a lesion in cerebellum that was identified “by accident” when I moved during the spine MRI. No symptoms, but radiation oncologist insisted on treating it and I agree with him. Already had a stimulation and mask done.
Will you need a STR or whole brain radiation? The amount of radiation and possible side effects could be quite different.
Also, what type of BC do you have?
Hope that our treatments will be effective with minimal side effects.
Sending you healing thoughts and positive energy to get you through the days ahead.
Maura❤️
I’m thinking of you. I’m having a ct scan Friday to check for a brain met as I have numerous skull mets and an ongoing headache. I have had radiation to the base of my skull and had to wear the mask that fastens to the table. If you are claustrophobic get some Ativan from your doctor and take it as I had to get them to unfasten me and get off the table when I had a panic attack. Not to scare you but want you to be prepared.
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If the metastasis is not severe (ie widespread) why not surgery first?
innumerable brain mets Help!!
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