FAQ

01/13/06


Erin FAQ (frequently asked questions)


Do stable scans mean Erin does or doesn't have cancer?


Yes. 


Give me a real answer.


Erin would probably still have cancer even if it didn't show up at all on scans.  CT scans don't work very well on things that are smaller than a centimeter and the MiBG scans that might pick up smaller NB is not working on Erin's current tumor configuration.  That means that even if nothing showed up we would still suspect that she had NB lurking.


You didn't answer my question.  I know she is not NED.  Why would a scan show the same sized tumor for seven months in a row, if she was having chemo all that time?  Wouldn't it either shrink because the chemo was working or grow because it wasn't?


Unless we remove the pieces and biopsy them, we don't really know what's going on.  The scan could be picking up lymph nodes with scar tissue on them or some sort of stroma (extra background tissue) around them.  The tumor cells also could have matured into something benign, like ganglioneuroma.  We might also be dealing with NB that is viable, just not currently dividing ("Ain't Misbehavin").


Would a tumor really do that?


Unfortunately, yes.


Since you don't know, will she keep having chemo forever?


Another toughy, but for now, we will assume that she'll have chemo for long enough that it will seem like it is forever.   BUT (now here is the reward for those of you who have made it this far) it doesn't always have to be topotecan/cyclophosphomide.  Starting on Monday (that's right, next week) Erin is switching to a new chemo drug, oral etoposide.


Did you say oral?


Yep.


Does that mean through her mouth, not her port?


Yep.


Does that mean no clinic next week?


Yep.


Does that mean I need to cancel my reservation to stop by for a visit.


I've taken care of that already.


Did the doctor switch her to this because the other wasn't working anymore?


Hard to say.  The tumor wasn't growing while she was on it, but lately it wasn't shrinking either.  If those tumor cells are still viable, it may have been holding them in check (like pinning an opponent's bishop in chess--it's still on the board, but not longer in the game), but if viable tumor cells remain, they are probably chemo resistant to that particular combo. 


If topo/cyclo is holding everything in check, isn't changing chemo risky?


Everything about having cancer is risky.  At this point, we are hoping that the new agent will mop up any remaining viable cells in the tumor and any remaining lurkers or at least keep the bishop pinned.  We also hope that Erin will tolerate it as well as she has the other stuff.


What do you think. . .will she tolerate it as well?


That's what I'm hoping.  At a minimum it keeps her in school everyday and avoids the long days at clinic.  It also should be less suppressive to her blood counts.  She won't have to take neulasta shots to build up her white count, a big bonus.  She may even grow hair.  She could also have mouth sores, nausea, and perhaps some liver concerns.  We'll just have to see how her body reacts.


When does she start?


Monday, if the pharmacy gets the order in by then.


How many pills?  How often?  For how long?


One each day for 21 days in a row, then 7 free days, then start over.


Bottom line it for me.  Is this good news or bad?


I'll get back to you in a month or two.  If it works, it's the best news we've had since last March.  If it doesn't, then we'll move on to something else.


What's the score on Davis's soccer game?


5-1, Bryan wins!