This was written to someone that found this website and had a lot of questions -

About the path and the genetics:

Astrocytes, oligodendrocytes and microglia are the three types of glial cells in the brain.  Astrocytes become astrocytomas, oligodendrocytes become oligodendrogliomas.  These cells can be mixed in a tumor referred to as oligoastrocytomas.  Typically pure astrocytomas are more aggressive then oligodendrogliomas and can evolve into glioblastoma multiforme – the most aggressive type.  Oligodendrogliomas are typically more slow growing, always recur, and recur in a more aggressive form with each recurrence.  Mixed oligoastrocytomas take on the properties of the more dominant cell type, which is why your doc is waiting for that information.

The genetics tests that I know about are 1p and 19q, 10q, EGFR, PTEN.  The 1p and 19q are very indicative of prognosis.  The better prognosis occurs with a tumor that HAS 1p and 19q DELETION.  Those tumors tend to be more responsive to chemotherapy. 10q is also being used as a predictor but is not as well documented as 1p and 19q.  EGFR and PTEN are cell receptors, and having the receptor is better (I think) so that additional chemo can be used.

Older chemo is called PCV, new chemo is Temodar (Temozolamide) and has a great record of extending the time to progression.

You mentioned that his tumor is in the Temporal lobe, I think the location is why he is having the mood swings and personality changes.  The medial part of the temporal lobe has the limbic system (hippocampus, dentate gyrus, etc), which is responsible for emotional memory.  Perseveration (repeating himself) is also common with brain injury – Dan does this too, although he is not always aware of it, and of course, you wouldn’t be able to tell that in his writing.

Some of the personality affect you describe also sounds like shock to me.  Dan and I both have gone through times of shock, grief, loss, bewilderment…. This situation is a crisis that feels, as a psychologist once said to us, like a train wreck.

About family and help:

We have had tremendous help and community support, neither of us has family near by.  Some tactics to make use of these resources have included: having a person outside the immediate family act as a coordinator for helpers, so that they don’t have to ask for help all the time, make a list of things people can do when they ask if they can help (“yes, you can get these 5 things from the store”, or “yes, you can do laundry” or be with him, or drive him somewhere) We also try to match the type of help with the helper (I don’t ask the single, elderly math professor to cook, but I might ask him to give Dan a ride somewhere), people can help as a group… ask the church or synagogue community to bring dinner 3 times per week…. Work colleagues can help with driving… Also, his wife needs respite care, and needs to know she is allowed/entitled/deserving of the help and love and support that he is getting…. If any of his children are still young they need to know 3 things: they did not cause it, they can not “catch” it, and they will be taken care of.  There may also be a time when they need to accept money from other people – family and strangers.  Know that sometimes giving money is the only way some people know how to help – and it is a gift for both the giver and the receiver.

(from Dan) “Having a brain tumor or injury is a total change in one’s life, and letting go of who I have been has been is the most difficult part for me, and I suspect will be the most difficult part for him.  A man’s identity is so tied to his ability to DO things, like working, driving, being the provider.  This transformation is very hard to fathom or accept or even live with.  It has taken years for me to even acknowledge or see.  

He is going to need a lot of support and patience from his community and family through this process.  There is a lot of grief and loss.  It’s like a part of him dying in a very slow and in an agonizing way.  And the worst part about it, as I alluded to before, is that he powerless to do anything about it.”

With love and blessings,
Abi and Dan Katz -Stein