Here is more information about this trial. Both my hematologist and my bone marrow doctor said they would have no objections to this. But I can't travel to NY like they require so I won't be doing it. This is a response to my inquiry:
"Currently the trial is not open to accrual and enrollment is put on hold due to an amendment for the protocol. We are expecting the trial to reopen sometime in June, but we unfortunately do not have an exact date. We do not encourage you to wait if you have an alternative treatment plan that is available to you at this time.
The trial treatment is high dose vitamin c. The treatment runs continuously every day over 24 hours for 5 days in each cycle (cycle = 28 days). Due to the continuous infusion, patients are required to get a PICC line or mediport placed. Patients are also required to come into clinic every day for the first week (Monday to Friday) of each cycle and weekly for the rest of the cycles. The maximum amount of treatment on this trial is 4 cycles (approximately 4 months). For more information about this trial, I have attached the informed consent for you to read.
Prior to enrolling a patient, our team must screen and check eligibility requirements to ensure it is safe to have the patient receive treatment. For eligibility and screening purposes, we are required to review your medical records which outlines your doctor’s note, medical history, lab results, pathology reports, current medications, scans (if any), and other pertinent information regarding your health.
As you are aware for this trial, the patients are required to have myelodysplastic syndrome expressing the TET2 mutation in order to be qualified. If you are still interested in participating in the trial or would like a consultation with Dr. Tibes, at your best convenience, please send us your Full Name, Location to where your medical records are, name of your hematologist, where you currently reside, and best number(s) to reach you. Thank you for your time and we look forward to hearing back from you."
I have a copy of the informed consent, if anyone wants a copy, send me a pm.
Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.