Leptomeningeal Disease (LMD) Resources

We are in this together. Whether you are fighting this disease, supporting a loved one, or simply trying to stay informed, I hope something I share here can be helpful to you. You are not alone in this, even when it feels that way. Stay hopeful, stay strong, and remember, where there is a will, there is a way.

Below is a list of resources I’ve personally come across on my own journey. There may be many more that I haven’t discovered yet. I’m not a medical doctor, and none of this is medical advice. I’m simply sharing what I’ve learned to help spread awareness, offer ideas, and hopefully make this road feel a little less overwhelming.

This is a bit of a data dump, but these are the places where I found critical information and, just as importantly, met incredibly kind and knowledgeable people who helped me navigate LMD.

One of the most helpful things for me was finding other survivors. Connecting with people who were living this, and still living their lives, gave me hope when I needed it most. Community matters more than I can even put into words.

I also want to clarify, I have done many things on the functional and integrative side as well, meditation, breathwork, stress reduction, nutrition changes, mindset work, and more. I did not list all of that here. What’s below is mainly focused on immediate LMD-related medical resources, research, and treatment pathways that helped me take action quickly.

Mindset
Please read the book Radical Remission. This is a MUST. Your mindset is everything.

Clinical Trials & Research

REYOBIQ™ - https://www.respect-trials.com/lm/
ClinicalTrials.gov – You can search for trials that may fit your specific situation. Some trials exclude LMD patients, but always ask about compassionate use. If you believe something could help you, do not let a “no” be the final answer.

Specialists I’ve come across
• Peter A. Forsyth – Moffitt (primarily breast cancer LMD)
• Isabella Glitza – MD Anderson (primarily melanoma LMD)
• Intrathecal Deferoxamine Trial – MSK

Treatments and Trials (Melanoma-focused)
• Proton Therapy (recommended by MSK for melanoma patients in addition to immunotherapy)
• Intrathecal nivolumab – available at MSK and MD Anderson
• Intrathecal Opdualag – trial at MD Anderson
• Intrathecal HLA trial – potentially coming at MD Anderson

Genomics & Targeted Therapy
Look closely at your pathology and mutation report. There may be a targeted therapy that matches your specific mutation. For example, I use Braftovi/Mektovi and previously used Tafinlar/Mekinist.

These mutations can also open doors to clinical trials or compassionate use programs. Many times, doctors don’t automatically mention trial options, but once you identify a mutation, you may qualify elsewhere sooner. You can then reach out to other hospitals directly.

You may also be a candidate for PARP inhibitors. I personally requested further biopsy a year later after an outside doctor reviewed my pathology.

International & Off-Label Options
There are trials and treatments outside the U.S. as well. Ask about compassionate use and off-label options.

Lifestyle
If you can, change your diet, stress levels, and mindset immediately. These things truly matter.

Integrative Care
I strongly recommend seeing an integrative doctor as soon as possible. I can share recommendations if helpful.

Support & Education
https://lmcancer.org/about-meningeal-disease/ – Includes doctors and support groups

https://myrgcc.com/ – I did not personally do this, but I’ve heard about it.

These foundations have been incredibly insightful and stay up to date on cutting-edge trials and opportunities:
• Melanoma Research Alliance
• Melanoma Canada
• Melanoma Research Foundation
• Stop Melanoma Movement

If you’re reading this, I’m sending you strength, hope, and light. This is overwhelming, but you don’t have to navigate it alone. If my journey can help even one person feel more empowered, then sharing this is worth it