Journal entry by Lance Bolay —
Daphne and I saw my neuro-oncologist yesterday at Baylor Scott and White in Dallas. She ordered an MRI for that morning so we could discuss it at our appointment that afternoon.
The MRI looked good. No tumor recurrence, and very little, if any, inflammation from the radiation. That’s uncommon, but is also one of the benefits of proton therapy.
My neuro-oncologist is very kind, and also a realist. No sugar-coating. Daphne and I always walk away feeling depressed. But I think that’s probably a good thing. We need to know what we are dealing with so we can deal with it realistically.
The doctor said they do not use the words “cure” or “remission” when referring to brain cancer (or at least Grade 2 or Grade 3 ependymomas). She said that it is not a matter of “if” the cancer recurrs, but “when”. She said it’s like living with a chronic disease that must always be managed and observed closely.
Therefore, for the first year or two, she will order 4 MRI’s per year, then 3, then 2, and then maybe 1 per year. Everything is contingent on results.
If (when!) the cancer recurrs, the standard treatment is chemotherapy. That will also be the time to find and enter a clinical trial, if possible. For example, MD Anderson is currently conducting a stage 2 trial using two drugs (carboplatin and bevacizumab [aka, “Avastin”]) to treat ependymomas. This combination appears promising.
It still doesn’t appear that the CSF leak has healed. This may require another surgery. I will hopefully know more within a couple weeks.
Other than that, I’m functioning relatively well. I’m able to work, exercise, and do much, but not all, of what I did before. I am hopeful we will continue to see gradual improvement.
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