lung cancer has spread to brain
Hello.
My lung cancer has spread to brain. I will be having radiation tomorrow using TrueBeam technology. I was told side effects should be minimal if any. Are there others who have used this treatment. I’m nervous about it!
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@curiouskitty, I have experience with both radiation to the brain and subsequent radiation necrosis. I was first diagnosed with the EGFR Exon 19 mutation in my right upper lung lobe in 2018. I had a lobectomy followed by 33 rounds of chest radiation and four rounds of carboplatin and pemetrexed (because the cancer had spread to a nearby lymph node.)
Two years later, the cancer came back as a 3.2cm diameter cyst in my left parietal lobe. I have it surgically removed followed by four rounds of radiation. It took a while but I recovered all of my ability to move.
Four years later I had renewed activity in that same area, so I received one more round of targeted radiation. Eight months after that I developed radiation induced necrosis in late 2024. We successfully treated that with Avastin, By then I had developed drop foot on my right side and was somewhat limited with the use of my right shoulder. MD Anderson and my local team have been fighting radiation induced necrosis and new tumors in that area ever since. My second brain surgery last January has left me with serious right side physical challenges. For example I'm "typing" this with voice to text. I'm returning to MD Anderson for an ABTI MRI on Monday. (Advanced brain tumor imaging)
So it took five rounds of targeted radiation before I developed radiation induced necrosis. I was on 80mg Tagrisso for those four years after the first brain surgery. Now, after almost six years, it's still considered limited resistance because there is no trace of cancer anywhere else in my body and no new mutation. You should be fine with just one round of limited radiation. I had no immediate side effects from the radiation. Best of luck to you and yours in your journey!
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3 Reactions@edivebuddy
The side effects can be dreadful. It looks like the necrosis is one of the worst to have to contend with and I admire your research and knowledge. Thank you for sharing it.
I’m going to have to ask more about follow up. I know an MRI is scheduled in a month but no more than that!
@flusshund
Thank you for your response. It seems we must just hang on and roll with the punches but as your experience shows it isn’t easy! I admire your determination. You could not have a better team than MD Anderson. I hope you will have good news after your appointment Monday!
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1 Reaction@panda2ac just vague headaches in the AM, I wasn't too concerned about until the brain mets were found. So far 2 gammaknife treatments. Now anxiously waiting for f/u mri of brain and brainstem. Never understood scanxiety since my 2019 dx stage4 nsclc...until now
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1 Reaction@tntuxedo I was told that it will take at least 3 months to a year before the MRIs will show a reduction in the lesion. Yeah the waiting of the unknown is the worst. Will you need more gammaknife treatments?
@loribmt. Thanks so much, info. is really helpful!!
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1 Reaction@rlf66 Thanks so much, info. is really helpful!! God bless.
Thanks so much, info. is really helpful!! God bless.
@panda2ac hoping not 🩶
@tntuxedo it's funny tho that your name is what we called the tuxedo cat that was coming around our house! Tntuxedo😊