Sonodynamic Therapy - 2nd treatment - check!

 

Esther's second sonodynamic therapy (SDT-201) procedure went very well at Children's National Hospital yesterday.  She was under anesthesia for the treatment and an MRI immediately following the treatment.  The first therapy, done on 8/31/2022, treated the right side of the tumor in her brain stem.  The right side of the tumor is smaller and the clinical trial team thought it would be safer to try first since this is a brand-new therapy.  The right side received 28 sonifications from the low-intensity frequency ultrasound (LIFU) to activate the ALA drug and create an ROS reaction, and eventually cell death (to only the tumor cells).  The second treatment, done 10/03/2022, was for the left side, which is significantly bigger but praise the Lord has remained stable.  The left side received 54 sonifications yesterday.

A few things we've learned over the past couple of days:

Compassionate Use and Single-Patient Exemptions are not the same thing in Clinical Trials --> Compassionate Use means evidence is building that the treatment is effective and patients who are not officially eligible for the trial could still benefit from the treatment --> Single-Patient Exemptions mean that there is not a compassionate use route available, and all parties involved in the trial (hospital, private companies, sponsors, even the FDA) has agreed to let a patient receive treatment even if there is no evidence of effectiveness yet

Sonodynamic Therapy and LIFU are not the same thing -->  the ALA drug + a LIFU device = Sonodynamic Therapy

DIPG/DMG tumor cells actually absorb the ALA drug faster than Glioblastoma (GBM) cells (DIPG/DMG cells either need the drug more or they metabolize faster)

Glioblastoma cells actually kill healthy brain tissue

DIPG/DMG cells do not kill healthy brain tissue - the tumor cells create interference with normal brain activity, but the normal tissue remains intact and unharmed - making the symptoms of DIPG/DMG completely reversible.  As the tumor cells die, regular brain function returns - other parts of the brain do not have to compensate for any lost tissue.  This means that DIPG/DMG tumors are actually less harmful than Glioblastoma tumors....except for the location in the brain (since DIPG/DMG is in the brain stem which controls all vital signs), which is why researchers have avoided treating DIPG/DMG...until now...

#esthersmiracle

#esther73

#sonodynamictherapy

#sonALAsense

#clinicaltrialSDT201

#childhoodcancer

#morethan4

#NotRareNotFair

#DIPGWarrior

#dipgawareness

#DIPG

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