lung cancer has spread to brain

Posted by curiouskitty @curiouskitty, 4 days ago

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!

Interested in more discussions like this? Go to the Lung Cancer Support Group.

@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!

REPLY
Profile picture for edivebuddy @edivebuddy

For cerebral radiation necrosis there are no FDA approved treatments. there are 3 treatments they will generally use. bevacizumab (Avastin) and it's nosimilars with steroids. Obviously steroids are not an ideal long term solution. That's where the boswelia comes in. It's control the swelling in my brain for 5 years now.

The other is hyperbaric oxygen therapy. It's temporary, Time consuming and many places don't have it. Then pentoxifylline plus vitamin e. Cheap, effective for many, and way fewer side effects than Avastin.

Had it not been for the osteonecrosis of the jaw requiring extensive dental we work I might still be on it. But had to quit and went back to pentoxifylline for both the osteonecrosis and radiation necrosis. It was working just as well so I stuck with the pentoxifylline.

Jump to this post

@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!

REPLY
Profile picture for Matthew K @flusshund

@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!

Jump to this post

@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!

REPLY
Profile picture for panda2ac @panda2ac

I was in the same situation, I was diagnosed with stage 1a adenocarcinoma of my right middle lobe in 2022. They removed the whole middle lobe and all of the follow up scans had been clean, but, they didn’t do any brain MRIs. Since it was caught early and removed they thought I was all clear. But, last year I started having some issues with my left foot, feeling a tightness around my foot. I thought it was neuropathy, but, they did a brain MRI and a biopsy and determined that the adenocarcinoma had spread to my brain causing my motor issue.s. I had what they call the LINAC radiation procedure which is very similar to the gamma knife, but, this only takes about 15 minutes of radiation and they don’t have to screw a mask to your head. Instead they make a customized mask that screws onto itself and the to the table. I didn’t feel anything and was able to go home about half an hour later. This was only done last month, I have to wait 3 months to do another brain MRI to see if it has reduced in size. Meanwhile, I will start taking tagriso to prevent it from coming back. I’m also doing PT to help with my walking gait but so far have not noticed much changes in my mobility issues. I’m hoping that it will improve with time.
Did you have any symptoms before they diagnosed your brain cancer?

Jump to this post

@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

REPLY
Profile picture for tntuxedo @tntuxedo

@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

Jump to this post

@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?

REPLY
Profile picture for Lori, Volunteer Mentor @loribmt

Good morning, @curiouskitty, I haven’t had personal experience with this form of treatment. But, twelve years ago a very close friend of mine had renal (kidney) cancer which metastasized to her lungs and brain. Her kidney was removed and the lung cancer treated successfully.
She then had radiation treatments to zap the areas in her brain. It’s amazing technology. Precise doses of radiation beamed at tumors while minimizing exposure to surrounding healthy tissue. She really didn’t have any notable side effects and even continued to supervise the building of her new house at the time.

Fast forward twelve years, at 73, my friend continues to enjoy her very active life of travel, biking, kayaking, hiking, art work, civic activities, etc., without skipping a beat!
I’m sure others who have had this treatment will be able to talk more about how the procedure is done with mapping and such. But I thought I’d share my friend’s success story.

Sending positive thoughts your way!

Jump to this post

@loribmt. Thanks so much, info. is really helpful!!

REPLY
Profile picture for rlf66 @rlf66

@loribmt. Thanks so much, info. is really helpful!!

Jump to this post

@rlf66 Thanks so much, info. is really helpful!! God bless.

REPLY

Thanks so much, info. is really helpful!! God bless.

REPLY
Profile picture for panda2ac @panda2ac

@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?

Jump to this post

@panda2ac hoping not 🩶

REPLY
Profile picture for tntuxedo @tntuxedo

@panda2ac hoping not 🩶

Jump to this post

@tntuxedo it's funny tho that your name is what we called the tuxedo cat that was coming around our house! Tntuxedo😊

REPLY
Please sign in or register to post a reply.