Monday, December 15, 2014

Consultation at MD Anderson

I should have known better than to schedule the first trip here on a Monday.

We got to the appointments on time and were able to find the Lymphoma center just fine.  The waiting room was HUGE and packed already - wall to wall - standing room only.   As we checked in we found out there was a "bit of a delay" because the computers were down.

After waiting over 3 hours we finally did see the doctor.  Here's what he had to say:

The follicular lymphoma has turned into the aggressive Diffuse Large B Cell Lymphoma (DLBCL). Since Tex has gone through chemo twice -  first go-round he had the CVP treatment, which is one standard treatment they use, and this last time with the modified R-CHOP - the other standard treatment, it wouldn't really do any good to repeat either one.  If we had to, we could repeat the CVP... but there's a chance it wouldn't work, especially since we're now dealing more with the DLBCL, than the follicular lymphoma.

There are currently 3 clinical trials going on, two of which are showing great promise.  (Ok, so that eliminates one already).  So he is sending out emails to these 2 and will see which comes back.  That will mean
1.  the treatment will be free since it's part of a clinical trial.
2.  We'll have to make the drive to Houston, at least once or twice a month, for the foreseeable future.

We're still waiting for a few ducks to get into a row.  There was an issue with the insurance -- which I talked to and it's OK until I get back to my records at home, so that small fire is still smoldering, but won't turn into a greater alarm fire.  Another issue is the request for the last PET scan they tried to pawn off on us, but the request has to come from them, so waiting to hear back that they received that information.  The next issue is when we go back -- they didn't tell us exactly when our next appointment was -- it'll either be Wednesday or Thursday -- but we're supposed to have it on an online patient portal, and it's not there. So... we'll have to get that figured out tomorrow. It may be they are waiting to see when the scan information gets in.

The one thing we do know -- we have Tuesday as a rest and recover day.  There are a couple museums we want to see, but for the most part, we just want an easy, restful day.  

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