Medical schedule

[posted by Predrag, notes from a phone conversation with Ed, sorry if garbled]

Sunday August 29

• The chemo starts Sunday night and goes for 42 nights. The radiation is weekdays only for six weeks (until October 8?). A friend is organizing with insurance company an ambulette to pick them up, take them back.
• Another friend is exploring possibility of hiring a nursing student from NYU to help a bit - currently Ed (or Mimi) is with Barbara at all times.

Thursday August 26

• Went to S-K; they tested the head mask alignment in preparation for the treatments that start on Monday.
• Barbara and Ed are going on their daily walks. She has difficulties with speech and also sometime gets confused with practical daily things. Speech therapist expects her speech to improve.

Wednesday August 18 went to oncological ophthalmologist

• The issue is that the tumor is close to the optical nerve. It is already impacting Barbara's left eye. What are the risk of radiation this close to the nerve?
• He found that the acuity of the left eye and its color sensitivity were noticeably less than those of the right. He could not say whether this was from the operation or the tumor's breaking of small blood vessels. (as revealed by the leaking into the surroundings of the gadolinium used for the MRIs). Whether the treatment would make the visual problem better or worse, he could not say. He was familiar with use of TTF for eyes. It has gone out of favor in that case because the electric fields are unpredictable and can cause burns. His experience is limited to eyes and he had no information about the case of brains.

Tuesday August 17 went to the main oncologist:

• Oncologist said that S-K had previously participated in the GBM clinical trial, but they pulled out because the "did not think well of it." One problem is that the head has to be shaved and patients have to lug a large heavy gadget with them.
• Ed is pondering. A contact to manager of the trials at Cornell implied that the backing of MSKCC would be required, or that someone at Cornell would somehow be involved in monitoring the standard treatment. Alternatively, B could move over to Cornell for the standard treatment, but that would not be wise at this stage.
• If one is to pursue the Cannabinoids, TTF is out as far as a trial is concerned since only one treatment can be run.
• Oncologist said that if Barbara takes 2 walks every day, Ed can stop giving he anticoagulant injections. She is weak, but Ed will try to get her walking.

Monday August 16 saw the radiation oncologist. They made a mask.
Saturday August 15, went for an MRI.