^{Support Registry Update}

Treatment Plans and the BRAF Mutation

In support of
Mike Dilbeck

Good morning, dear friends and family --

I wanted to share another update since I've now met with my second oncologist. Yes... I have two. High maintenance, apparently. 😉 My first oncologist is overseeing my brain radiation, and this one, Dr. Mariam El-Ashmawy at UT Southwestern, specializes in melanoma.

First of all, I have to say that the care I'm receiving at UT Southwestern has been extraordinary. I am truly blown away.

When I first arrived, I was honestly getting a little frustrated because my doctor was running so late. Then she walked into the room and spent over an hour and a half with me. I quickly realized why she was behind. She gives every patient the time they need, and in a world where healthcare often feels rushed, I can't tell you how much I appreciated that.

This wasn't a diagnosis appointment—I already know I have Stage IV metastatic melanoma—but it was another appointment where the reality of my situation became a little more real.

When I met with my radiation oncologist, the word that hit me was "tumor." This time, it was "disease."

After spending the first 15 minutes simply getting to know me as a person, Dr. El-Ashmawy gently but very directly said, "You have a lot of disease in your body."

Those words carried a lot of weight.

She walked me through my PET scan and pointed out every area where melanoma has spread. There were even a few spots I didn't know about, including one on my face. She also explained that surgery is not an option. There simply isn't a way to just remove the amount of disease that's present throughout my body.

Another reality check.

So... where do we go from here?

We spent about an hour discussing the two primary treatment options.

Immunotherapy

This treatment is an infusion every three weeks that helps my own immune system recognize and attack the melanoma. One of melanoma's tricks is hiding from the immune system; these medications help remove that invisibility so my body has a better chance to fight back.

These treatments could continue for months—and possibly years.

Dr. El-Ashmawy was also very honest about our goals. Because my cancer is considered incurable, the objective isn't to eliminate it completely. Success means keeping it from spreading further or growing larger. An even greater success would be seeing the tumors shrink.

Hearing the words, "This is an incurable cancer," was a gut punch.

Targeted Therapy for My BRAF Mutation

The tissue testing on one of my tumors confirmed that I have what's called a BRAF mutation, along with several other mutations. Surprisingly, this was actually good news.

Having the BRAF mutation gives me access to highly targeted oral medications designed specifically for cancers like mine.

The upside is that these medications often work quickly and can significantly shrink tumors.

The downside is that the benefits don't always last, and the treatment can come with significant side effects. It involves taking eight pills a day, and those side effects could have a major impact on my quality of life. They are powerful drugs, and they can also be quite toxic.

After talking through everything, we decided not to rush the decision.

One thing I appreciated so much was that Dr. El-Ashmawy wanted us to make this decision together. She wanted to meet me first, understand who I am, hear my concerns, and then build a treatment plan with me—not just for me.

I shared that I was leaning toward immunotherapy, even though my experience with Keytruda during my first melanoma journey ten years ago was not a good one. I dealt with significant side effects, and eventually had to stop treatment.

But that was ten years ago.

Back then, immunotherapy was still relatively new. My treatment was part of a clinical trial, and doctors were still learning what these medications could do and how best to manage their side effects. Today, the science has advanced tremendously, and there are many more tools available to help patients tolerate treatment.

Because of that, I feel much more comfortable giving immunotherapy another chance than starting the targeted oral medications.

She smiled when I shared my thoughts and agreed that we've come a very long way in treating melanoma.

She's going to discuss my case with several of her colleagues before making the final recommendation, which I also find incredibly reassuring. As of today, we're leaning toward beginning immunotherapy in the next couple of weeks. Treatments would be every three weeks for the foreseeable future, with regular scans to monitor how well it's working.

Her exact words were, "I'm going to be watching you like a hawk."

I like that.

Brain Radiation Update

A quick update on the small brain tumor.

My single radiation treatment is scheduled for Tuesday, August 11, and it will be an all-day appointment at UT Southwestern. This should get rid of this tumor.

Two very dear friends, Whitney and Raegan, will be with me throughout the day, and I couldn't be more grateful for their love and support.

As I wrap this up, I'll simply say this...

What I'm facing is serious.

I have a lot of disease throughout my body, and the melanoma is active and aggressive. Our goal now is to get ahead of it, manage it, and keep it under control for as long as possible.

There is still hope.

There are treatments.

There is a plan.

And for that, I am incredibly grateful.

So many of you have asked what you can do.

Right now, honestly... nothing beyond what you've already been doing.

Please continue to send your love, your encouragement, your positive thoughts, and your prayers, if you pray.

I've been blessed with a small group of dear friends and loved ones who are serving as my care team. If my needs change, this platform has tools I can activate to ask for specific help. For now, though, I truly have everything I need.

Finally, thank you.

Thank you to every person who has reached out, sent a text, made a phone call, shared a prayer, or simply let me know you're thinking about me.

I continue to feel overwhelmed by all of this, while somehow also remaining hopeful, optimistic... and yes, maybe just a tiny bit in denial. 😊

I love you.

I appreciate you.

— Mike

Mike Dilbeck
about 11 hours ago

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Comments

Cynthia Barron about 10 hours ago

Sorry for your situation but will continue to pray 🙏

Robert Delp about 10 hours ago

You’re brave and strong. I’m just down the street if you ever need me.

Paul Wupperfeld about 10 hours ago

You are in our prayers, Mike.

Carl Parker about 9 hours ago

Thanks so much for the update, Mike. You're in the best of hands! All the best for continued good options, and good choices.

Danny Zamora about 9 hours ago

Praying for you buddy.

Julie Green about 8 hours ago

Hey Mike, don’t know if you remember me or not but we worked for AIDS marathon at the same time. I’ve been thinking a lot about you lately and will continue to pray that your treatment is successful and provides nothing but positive results with as few side effects as possible. Just know that there are many outside of your supportive circle of friends that are saying a prayer for you.

Jennifer Robeson about 8 hours ago

Mike. You are dearly loved and cherished. You are in my prayers .

Joseph Putignano about 8 hours ago

Sending blessed energy to you

Robert Hernandez about 7 hours ago

We meet a while back through some mutual friends, as a Stage IV Colon Cancer survivor, I know too well what you are going through. Please know this, we are all cheering for you, sending you prayers, hugs and love. Attitude is everything and it is also the hardest thing. WE are all supporting your full recovery.

Katrien Vervisch about 6 hours ago

Mike. I keep you in my heart! Than look s to the LMF and you, my first SL, Tim and I have now been married 44 years!!!

Kelly Bransom about 6 hours ago

You are on my permanent prayer list, my friend. Always! Keep fighting.

Mike Hayes about 5 hours ago

Sending you every good and healing vibe.

Chris Heinbaugh about 4 hours ago

God loves you Mike. We do too. Let everyone's prayers and love support and lift you friend.

Susie Machemehl about 3 hours ago

What an update, Mike! Thrilled you love your docs, thrilled you have a plan, and thrilled you have a care team. Consider me part of the Cheer Team…cheering you on with love in my heart! 💜

Janie Bush 23 minutes ago

Dearest Mike, I am so glad that you have an excellent medical team partnering with you for your treatment options rather than telling you what to do. In my experience, having a modicum of control in a pretty much uncontrolable situation is good for one's psyche. Sending you a long, strong, loving hug.

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