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Anyone else experience necrosis following targeted brain radiation?

Posted by Matthew K @flusshund, Dec 9 6:33am

As many of you know, I am a 6 ½-year lung cancer survivor, with almost 4 of those years navigating stage IV after metastasis to my brain above the left parietal lobe. I’ve been on Tagrisso since then and continue to respond well to it. Six months ago, I had a mild resurgence of cancer in the area where the brain cyst had been removed. My doctors recommended one round of targeted radiation, which went smoothly.

Recently, I noticed a gradual return of the same symptoms I experienced after my brain surgery. Last week’s MRI revealed necrosis at the site of my previous radiation treatment. While this news caught my attention, my oncologist has been very reassuring, explaining that this is not unusual and is manageable. I’ve started 4 mg of dexamethasone daily and am awaiting approval for biweekly Avastin treatments. My doctors plan to schedule another brain MRI in two months and to perform a ctDNA test with the first round of Avastin.

I’m 64-years-young, feeling hopeful, and overall, I’ve tolerated my treatments quite well. I’m curious—has anyone else here had a similar experience with necrosis? How did it go for you? I’d love to hear your insights or words of encouragement!

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

sg | @sglaza | 5 days ago

Hello Matt,
Unfortunately I don't have any insight or information to provide related to your most recent post. I can say on behalf of many of the participants on this blog that we truly value the expertise and compassion that you routinely provide to others facing a multitude of questions and concerns related to their lung cancer. You are an extremely valuable resource to all of us and I hope that you find out some additional information regarding your latest personal question.

Continued good health and Happy Holidays!

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Mentor
Lisa, Volunteer Mentor | @lls8000 | 5 days ago

Hi Matthew @flusshund , The reality is that many mutation-based lung cancers impact the brain at some point. I've been fortunate to avoid that so far. I've certainly heard of others dealing with necrosis. It sounds like you are in good hands with your team and the action that they've proposed.
I've anecdotally heard of people having LITT (laser interstitial thermal therapy). Has anyone talked to you about that as an option, possibly only if the Avastin isn't effective?
https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/laser-interstitial-thermal-therapy
How long will you have the Avastin treatments?

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Matthew K | @flusshund | 4 days ago

Thanks, @slgaza, for the positive words.

Hi Lisa @lls8000, I like my Radiologist, who works closely with my Oncologist. After telling me about the plan for Dexamethasone and Avastin, he said, "And if you were to ask me if there was another option," and told me we could bring the neurosurgeon back in, have her reopen my head, remove the necrosis, AND positively identify whether we see recurrent or mutation by taking a biopsy. Of course, there is the risk and recovery time from surgery. And then he repeated, "If you were then to ask me if there was another option, I would mention Laser Interstitial Thermal Therapy which no one wants to say, so it's called LITT." He explained that's a more experimental plan with a limited track record. He also said there isn't anyone in our area who performs that procedure, though he knows of someone in Nashville (TN). After that, I asked the question, and he said those were the options. 🙂

I then asked him to weigh the risks and benefits of each procedure, which he did. He concluded that the Dex/Avastin approach is the most likely to succeed with the least risk. It is currently the typical approach with an established record of success. And that may all be in the context of what he knows about my body and background.

I had my first infusion on Tuesday with no noticeable side effects. The next is scheduled in two weeks, modified by the holiday, on December 30th, and I have a third planned for January 13 and a fourth for January 27. He had mentioned he would order another MRI, and I called his office yesterday to see when that would be scheduled. He plans to do that after the second infusion in early January.

There are no side effects from the infusion, but the daily Dex has had a small effect on my GI tract (mostly more gas), and I have to consciously relax more to get to sleep. In the past, I formerly studied Zen meditation under a master on top of a mountain so I'm able to watch my breathing until I fall asleep. But I now have to do that regularly to get to sleep. Most importantly, I'm still having trouble picking up my right leg, moving my right foot, dealing with occasional foot drop, and not walking on the outside of that foot, so the symptoms are still active. I should have asked how soon I can expect to see results. For now, I'll stay observant!

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1 reply
Mentor
Lisa, Volunteer Mentor | @lls8000 | 4 days ago
In reply to @flusshund "Thanks, @slgaza, for the positive words. Hi Lisa @lls8000, I like my Radiologist, who works closely..." + (show)
@flusshund

Thanks, @slgaza, for the positive words.

Hi Lisa @lls8000, I like my Radiologist, who works closely with my Oncologist. After telling me about the plan for Dexamethasone and Avastin, he said, "And if you were to ask me if there was another option," and told me we could bring the neurosurgeon back in, have her reopen my head, remove the necrosis, AND positively identify whether we see recurrent or mutation by taking a biopsy. Of course, there is the risk and recovery time from surgery. And then he repeated, "If you were then to ask me if there was another option, I would mention Laser Interstitial Thermal Therapy which no one wants to say, so it's called LITT." He explained that's a more experimental plan with a limited track record. He also said there isn't anyone in our area who performs that procedure, though he knows of someone in Nashville (TN). After that, I asked the question, and he said those were the options. 🙂

I then asked him to weigh the risks and benefits of each procedure, which he did. He concluded that the Dex/Avastin approach is the most likely to succeed with the least risk. It is currently the typical approach with an established record of success. And that may all be in the context of what he knows about my body and background.

I had my first infusion on Tuesday with no noticeable side effects. The next is scheduled in two weeks, modified by the holiday, on December 30th, and I have a third planned for January 13 and a fourth for January 27. He had mentioned he would order another MRI, and I called his office yesterday to see when that would be scheduled. He plans to do that after the second infusion in early January.

There are no side effects from the infusion, but the daily Dex has had a small effect on my GI tract (mostly more gas), and I have to consciously relax more to get to sleep. In the past, I formerly studied Zen meditation under a master on top of a mountain so I'm able to watch my breathing until I fall asleep. But I now have to do that regularly to get to sleep. Most importantly, I'm still having trouble picking up my right leg, moving my right foot, dealing with occasional foot drop, and not walking on the outside of that foot, so the symptoms are still active. I should have asked how soon I can expect to see results. For now, I'll stay observant!

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Great approach; a plan, a backup plan, and a second back up plan. It's important to have options if you need them. Hoping that you start noticing some improvement in the symptoms soon!

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Matthew K | @flusshund | 3 days ago

@lls8000, and I love that he teaches me what questions to ask! I'll keep that one in mind in the future. In addition, I wish I had asked one more: "How soon can I expect to see results?" Being unable to walk without pain is exceptionally frustrating, particularly since I've been maintaining an active lifestyle since my metastasis diagnosis 4 years ago. Even the neighbors have noticed and asked about my not walking the dog twice daily. I'll call my radiologist's nurse later this morning.

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