XIT Foundation

The goal should never be another 3 months.
The goal should always be to cure.

CRISPR is showing us the way.
Every child deserves this chance. 🧬💜

She was 13 and out of options until an experimental treatment worked #shorts After leukemia treatments failed, Alyssa Tapley, at age 13, was told she would die. Then, doctors tried an experimental gene-edited therapy. She became the f...

XIT Review 🧬
Open Trial: METTSEO for Newly Diagnosed & Widely Metastatic Ewing Sarcoma

There is a new frontline strategy being tested for Ewing sarcoma patients with newly diagnosed & widely metastatic disease.

METTSEO takes inspiration from evolutionary biology and population dynamics. Instead of giving the tumor time to adapt to a predictable treatment pattern, the trial attempts to push cancer cells toward extinction through rapid, sequential changes in therapy.

The METTSEO trial — Metastatic Ewing’s Trial Testing Schedule Enhancement to Improve Outcomes — NCT07194044 is a Phase 1 study that opened in February 2026 and is sponsored by Moffitt Cancer Center.

The structure of this trial is a radical departure from standard oncology protocols.

Standard Ewing sarcoma treatment typically involves repeating the same alternating chemotherapy regimens over many months. The challenge with widely metastatic disease is that cancer cells may eventually learn how to survive those specific drugs through clonal evolution.

Here is how the protocol may be sequenced to help prevent resistance:

1. Initial First Strike: Weeks 1–8

Patients receive intensive induction therapy with vincristine, doxorubicin, and cyclophosphamide, also known as VDC.

This phase is designed to rapidly reduce the bulk of the cancer cell population.

2. Sequential Second Strikes: Weeks 9–38

Instead of simply repeating the first strike, the trial immediately shifts into 30 weeks of rapidly changing drug combinations.

This includes:

Irinotecan / Ifosfamide / Vincristine / Actinomycin D, also known as IrIVA
Cabozantinib with primary-site radiation
Topotecan / Cyclophosphamide
High-dose ifosfamide
Irinotecan / Temozolomide

The goal is to eliminate residual cancer cell populations by changing the therapeutic pressure before the cells have time to mutate, adapt, and become resistant.

3. Maintenance Chemotherapy: Weeks 39–104

This is followed by a prolonged maintenance phase using alternating 28-day blocks of chemotherapy:

Oral cyclophosphamide / etoposide
Alternating with vincristine / liposomal doxorubicin

The goal of this phase is to target any remaining dormant or resistant cancer cells and reduce the risk of relapse.

XIT Review Takeaway

METTSEO is important because it challenges the traditional idea of repeating the same chemotherapy pattern over and over. Instead, it uses a rapid, sequential treatment strategy designed to stay ahead of tumor resistance.

For families facing newly diagnosed, widely metastatic Ewing sarcoma, this is a trial worth knowing about and asking their oncology team about. 💜

📰 CRISPR SOURCE:
CHOP + Penn Medicine Research

🔍Google Search:
"CRISPR platform AML CHOP"

Researchers at CHOP and Penn Medicine have developed a CRISPR platform that can study living AML cells directly from patients.

The first studies were performed using adult AML samples, but the team has already announced plans to expand the work into pediatric AML.

💜 Why XIT is paying attention:

If successful, this type of technology could help researchers identify what a specific patient's leukemia depends on to survive.

Article Link: https://www.chop.edu/news/childrens-hospital-philadelphia-and-penn-medicine-launch-first-crispr-based-platform-pinpoint

A breakthrough therapy can create exciting headlines, promising press releases, and a great deal of hope.

But the headline is only the beginning.

One of the most important questions to ask is:
❓ What was the Progression-Free Survival, or PFS?

PFS tells us how long a therapy helped keep cancer from growing, spreading, or returning. 📊

That number matters because two treatments can sound equally promising in a headline, but the actual benefit may be very different:

a few weeks
a few months
or years

PFS helps put a therapy into context. It allows patients, caregivers, and medical teams to better understand whether a treatment is offering meaningful disease control.

Data helps guide safer, more informed decisions.
When considering any cancer therapy, ask about the PFS.

At XIT we believe the right questions help families understand what the data really means🌟

🔍 Be your own investigator. Ask about PFS.

✨ DFMO Access Opportunity + Review ✨

For families facing Osteosarcoma or Ewing Sarcoma who are interested in adding DFMO to therapy, this clinical trial is currently enrolling and may provide access at no cost. 🎗️

✨ A Brief DFMO Review by XIT ✨

What is DFMO?

Difluoromethylornithine (DFMO, also known as eflornithine) is an oral medication that targets a specific enzyme (ODC) to block the production of polyamines—molecules that cancer cells rely on to rapidly grow and divide.

Current Research & Clinical Trials

In 2023, DFMO was FDA-approved as a maintenance therapy to help reduce the risk of relapse in high-risk neuroblastoma.

Building on that milestone, researchers are actively expanding clinical trials to evaluate DFMO's potential—often as a maintenance therapy or in combination with other drugs—across a wider range of difficult-to-treat cancers, including:

Bone Sarcomas: Osteosarcoma and Ewing sarcoma

Pediatric Brain Tumors: Medulloblastoma, Diffuse Intrinsic Pontine Glioma (DIPG/DMG), and other rare central nervous system tumors (like ATRT and ETMR)

Adult Cancers: Glioblastoma, prostate cancer, and non-small cell lung cancer

Why Families Are Interested

Because it is taken orally and has an established safety profile from its use in neuroblastoma, many families are interested in how DFMO might fit into the broader treatment landscape for these other diseases. 🎗️

While efficacy data for many of these newer trials has not yet been reported, studies are actively enrolling to help answer these important questions.

Please see the link below for full eligibility criteria, participating trial sites, and additional information.

Disclaimer: This post is provided by the XIT Foundation for educational and informational purposes only and does not constitute medical advice. DFMO is investigational in many of these settings and may not be appropriate for every patient or every treatment regimen. Families should always discuss treatment decisions and clinical trial considerations directly with their oncology team.

Thank you to Beat Childhood Cancer Foundation, Little Warrior Foundation, and Penn State Health for advancing this important work. 🎗️

This Is BIG: The BCC023 Trial using DFMO for Ewing Sarcoma and Osteosarcoma is NOW ENROLLING!!!!

What This Is: DFMO (Eflornithine) for Ewing Sarcoma and Osteosarcoma

What This Means: Ewing sarcoma and osteosarcoma primarily affect adolescents and young adults. Common treatments include chemotherapy, surgery and radiation. There have been no real advancements to the standard of care in decades. By incorporating DFMO (eflornithine) as an additional therapy and/or maintenance therapy, our team of experts believe to observe improved event-free survival and overall survival.

Why This Matters: With little to no change to treatment protocol since the standards of care were developed, this trial provides an additional, less-toxic form of therapy for children battling these pediatric sarcomas. DFMO has been shown to successfully prevent relapse in neuroblastoma and laboratory research indicates the same results may be seen in sarcomas. This trial represents hope for countless children and families.

Anyone wishing to enroll immediately will have to travel to Penn State Health in Hershey until other sites begin to open. For enrollment information, please email: [email protected]

Research: Beat Childhood Cancer

Thank you for your service 🫡 🇺🇸 and congratulations on being a 21-year cancer survivor!! ♥️ These are the stories we want to see more of. Thank you for supporting XIT. We appreciate you standing with cancer kids and their families.

Our Medicine Man! DECORATED NAVY WARTIME VETERAN 🌳21 year Cancer and Chemotherapy SURVIVOR