Nov 24th, 2023

Give it up for Layla folks, and real quick, we're running a "site wide all items" 50% off sale at Layla just finished a little something no one has ever tried, over the last three weeks. Her last MRI was stable, so the response (shrinkage) had stopped. I said all along that when that happened, we were going to move on. In the last 10-months, I have helped more than 90 families with her type. Kids are still alive that otherwise wouldn't be. But it was an exhausting, 100% completely "give," effort, until 6-weeks ago and her last MRI was two weeks after that and we decided to change things up based on ALL of the above.

One of the families I was helping, asked how she was doing with the intrathecal ("IO" - drugs injected directly into the brain) and named a certain drug. I said, "say what?!?!?! That's not part of the protocol." She said it was, and I said no, it's not but who cares, I'm all ears. And you know me, I asked about 20 Drs. around the country if they were giving it, only one even heard about it but yet let alone was doing it, and we all know damn well who that is, Boston, Wonder Woman. The family I was helping, I loosely knew her Oncologist so I reached out as well. We all discussed and it was clear, this was doable, this was safe. BUT, we were looking at going full on cowboy and not just doing this drug intrathecally one of the four weeks, we were going to give it two of the four. The protocol is drug 1, week 1, Mon to Fri, and drug 2 weeks 3 and 4 on Mon and Thurs, space things out. Then repeat. But this one, it's Drug 1, week 1, Mon to Fri, and drug 2, week 3 on M/W/F.

Since we had momentum stopped, we looked at doing drug 1 only, on weeks 1 and 3, M/W/F. No one has done this, until we completed it today. And if you want to science geek the hell out of this, the two old drugs, were drugs 121 and 116 on Layla's list out of 180 tested and we saw the response we did in just 5-weeks June 15 MRI to July 31 MRI. This is drug number 64. Want more science? This will really tickle your noodle. Last week, as I looked at this list, I noticed Layla has been taking drug number 59 periodically as needed, a steroid. It kills 75% of cancer cells in the lab setting, drug number 64 kills 69%, and those other two drugs killed 26% and 32% respectively. The potency was far lower to boot.

A steroid, killing cancer cells? I had the team look at the other two, yes, only two other epedymoma reports and the steroid was far down on the list for them, and the two main drugs were even worse than the 26% and 32% for Layla. So this is some FASCINATING stuff and really has a wide range of MD's thinking, because a scientist recently put out a paper saying that in his research, ependymoma seems to be a "wound that cannot heal" due to inflammation. We have done some MRI's with Layla on this steroid and some off. She physically does better when on it, a "duh" statement, but we SEE it on MRI.

If it is working, we're going to keep hammering it, but if not, we'll switch likely to something else because it really wipes Layla out and exacerbates her gait/balance/speech/memory issues to the point where she needs constant care and assistance to walk even from the couch to the bathroom. on her weeks off she is much better but weeks on, it's rough on her. But also if it works, constant care is what she shall get plus we just started working with a new Innovative kids therapy team that uses a blend of physical/occupational/speech therapy program fused in with, and this is the key, Microcurrent treatment therapy, a rare, SUPER expensive, but FDA approved and award winning technology that of course insurance will not cover. But what does it also help do, and what clued me into it? It helps reduce inflammation...

Read more about that here:

Hopefully this all works on MRI. But if not, we'll likely roll to drug #34 because there is very clear dosing data on it, and it is something no one ever really thought to give for ependymoma. This would be entering into the fascinating parts of Layla's drug screen. We spent 12-years sending 450 kids with ependymoma into an all eggs in one basket trial that spanned 220 institutions across the USA. It did nothing for anyone and all the while, little else was tried. So what works for this? No on ones.

We have an MRI on Thursday of next week. Stay tuned...

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