Has anyone had LITT for brain necrosis?

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. 🙏🏻🫂

@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.

@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! 🫂

@flusshund, It sounds like you have a great plan in place, doctors and medical systems, to back it up. I would expect nothing less! Of course, drilling a hole in your skull is scary. Weighing the risk/reward is always tough, but it's great that you have outlined what's important to you when faced with these types of treatment decisions. How soon might you have the procedure?

@lls8000, thanks for the encouragement. Still to be determined. My MD oncologist was out last week for the holiday. Now that she's back, things are moving forward. One of the issues is that the ctDNA level ticked up from 0.0 and the PET scan is clean and the brain MRI didn't show any cancer. Working theory is that it's hidden in the necrosis.

I've revised my treatment guidelines and shared them. I'm waiting for MD Anderson's team to get back with me.
Revised Treatment Desires
I’ve been thinking about how often I hear, “It’s up to you,” and
realized it might help to clarify what I’m aiming for — especially since I’m not the medical expert here.

What I’m hoping for:

1. Do everything reasonable to keep me here as long as possible.
2. Help me stay me — mentally first, physically as much as possible. If those ever conflict, let’s briefly talk through the options and trade-offs.
3. Prioritize long-term stability over quick symptom fixes.

With these goals in mind, I’m comfortable trusting the team to guide treatment decisions. I do appreciate being given the options, along with your recommendation for the best path, and—when it makes sense—the backup plan as well. I’m happy to follow your informed, experience-based judgment.

@flusshund was thinking of you and wondering how you are doing? Did you decide to have the LITT procedure?

Hi Everyone,

So much has happened since this last post.

MD Anderson is now leading my treatments with support from my local team. In early December the neurosurgeon recommended open brain surgery rather than LITT. The primary advantage is that he would be able to use brain mapping to minimize side effects. Plus, he would be able to see the extent of the necrosis and, hopefully, identify any potential tumors. That was the plan, anyway.

Instead, I needed emergency bowel surgery due to massive scar tissue in a place I'd never had surgery. There were complications. It was over a month before I recovered enough to return to MD Anderson.

Last Monday I took a nice nap which good authority has told me was actually over 5 hours of open brain surgery. Instead of the extensive necrosis the surgeon expected to find, he found tumors - lots of tumors. He is confident he removed most of the necrosis and my brain should be able to clean up the remaining on its own. As to the tumors, the plan is, after a month cooling period, to have my local team apply 10 rounds of low level radiation as specified by the MD Anderson radiation oncologist.

The biggest change has been a loss of right hand function. For example, I'm typing all of this with my left hand. The right hand has already demonstrated post-surgery improvement, and I'll keep working with it every day.

Sorry for not personally responding to all the messages I've received, but I don't log in most days. I hope everyone is making progress in your own journey.

Kind Regards,
Matthew

@flusshund what a tough couple of months for you. Sorry to hear you've had to have multiple surgeries and that you're dealing with progression. I can tell you have lined up the right folks to help you navigate the best path forward. Wishing you a good outcome from the radiation treatments and recovery of your right hand function. 🙏🏻

It is so nice to hear from you Matthew, @flusshund. I hope you are feeling all of the Connect love coming your way. I'm glad that you're recovering and are looking toward your next steps, with the help of MD Anderson. Thanks for adding your update, wishing you continued healing. No rush to respond, healing is most important, but did the tumors appear like necrosis on your brain MRI, or were they super sneaky and not showing at all?