Has anyone had LITT for brain necrosis?

Posted by Matthew K @flusshund, 6 days ago

Hi All,

Four years after a craniotomy and four rounds of radiation to remove my metastatic EGFR Exon 19 mutation, I had a small recurrence in that area which was eliminated by one more round of radiation. Unfortunately, 8 months later we saw signs of necrosis. Six rounds of Bevacizumab (Avastin) seemed to remove the effects of that necrosis (mostly swelling and detritus). Subsequent quarterly brain MRI's showed slight increase in the area of necrosis, but even MD Anderson agreed with "wait and watch".

The last MRI showed over a 60% increase in area. My radiation oncologist doesn't want to rechallenge with Avastin and thinks going back in is too extreme, which my Neurologist strongly agrees with. The consensus is Laser Interstitial Thermal Treatment (LITT). Briefly, they'll drill another hole in my head (and, yes, I'm making good advantage of the jokes), insert a catheter, and use the MRI to guide a laser to burn out the necrosis directly. Another advantage is that they'll be able to get a tissue sample because my ctDNA level is now a little positive instead of zero. PET scan showed nothing. With luck, the LITT will identify the cancer which is not seen in the MRI and be able to eliminate it as well.

Has anyone had this procedure? How'd it go? What were the after effects?

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

mamajite | @mamajite | 5 days ago

I'm sorry you're having to deal with this @flusshund. I think if I were in your shoes, I would try LITT. I wonder if you might find someone who has had the procedure outside of the lung cancer group. Let us know what you decide. 🙏🏻🫂

Matthew K | @flusshund | 5 days ago

In reply to @mamajite "I'm sorry you're having to deal with this @flusshund. I think if I were in your..." + (show)

@mamajite, thanks for the suggestion to look outside of the cancer group. As to choosing, I have degrees in Mechanical Engineering and a doctorate in Mathematics as well as 30+ years of experience in Engineering - none of which qualifies me to make a medical decision. I've hired the best team I can find, told them my goals, and count on them to get me there.

My goals are:
1) Live forever or die trying,
2) Maintain as high a level of mental and physical capability as possible, and
3) Always think long term, not short term. I'm not looking for immediate relief at long-term expense.

Yes, it sounds like I have LITT in my future. The current question is whether I have it at Vanderbilt, which is two hours away, or MD Anderson. As I understand it, and my Neurologist agrees, the main criteria is volume. How many procedures does the surgeon do per day? More is better. I'm ready to do it later this afternoon! But, again, I'm not a thoracic oncologist nor do I play one on TV. 🙂

Thank you, again, for your support.

mamajite | @mamajite | 5 days ago

In reply to @flusshund "@mamajite, thanks for the suggestion to look outside of the cancer group. As to choosing, I..." + (show)

@flusshund - my husband is an engineer and your approach to problem solving feels very familiar. 😅 I'm sure you'll choose the best surgeon possible. I also wanted to share that your comments about having success with Tagrisso gave me some much needed hope when I was first diagnosed. So thank you for taking time to share your journey here. I'm cheering for you! 🫂

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