Monday, May 5, 2014

Starting the next marathon..

This past weekend Cincinnati held the 'Flying Pig' marathon.  We didn't attend (Beth was recuperating from her port surgery on Thursday), but we were excited to start this morning on our own challenge - the beginning of chemo again for Beth.  This round is starting with four weeks of rituximab, which is intended to knock the leukemia back a bit before the next course; this should allow her blood counts to recover a bit as well, which will be a good thing.  The doctor at NIH strongly believed that Beth's adverse reaction to cladribine was likely to be related to her being transfusion-dependent when she started, so having better counts should give us more confidence in either cladribine or pentostatin as the next step.

We had been warned about a fairly high rate of allergic reactions, including some cardiac effects - cardiac arrest is noted as a possible side effect, but I think it more typically results in atrial fibrulation (elevated heart rate, etc.)  Given Beth's strong reactions to most drugs we came today prepared for the worst, and they planned to infuse her over 4.5 hours with breaks as needed - vs. as little as 90 minutes normally.  After giving her several pre-chemo drugs to reduce the risk of an allergic reaction, they started the rituximab.  After about 40 minutes, Beth started having intense nausea, etc., but this resolved relatively quickly after they stopped the rituximab and gave her some lorazepam, which is the only good anti-nausea medicine she isn't allergic to.  The chief side effect of the lorazepam is fatigue, so Beth drowsed her way through the rest of the treatment, which went off without further incident.  Beth is clearly on the 'gentle' pace today - we've had lots of other people go through the infusion room for chemo while we've been here.  Given the result today, though, I think that at next week's treatment they'll just start her off with the anti-nausea meds and it will likely go faster.

On the NIH front, we've not seen any detailed results (it's not clear exactly when that will happen), but our doctor spoke to the doctor there and it sounds like Beth is not a candidate for the monotuximab clinical trial we were considering; that trial requires at least one failure of another frontline therapy (either pentostatin or cladribine), and while Beth's remission was pretty unsatisfying (from a duration standpoint, anyway), it apparently wasn't short enough to count as an actual failure.  The good part of this is that it takes out some of the uncertainty about where we go next - we'll clearly be at UC and going with one of the two conventional therapies for now.

No other news today - we continue to be touched by the care and concern of so many people and are deeply appreciative of all the offers of help, etc.  

2 comments:

  1. Thanks Chad for your continued updates. I for one so appreciate seeing the med protocol spelled out. Beth rattles off the meds as though she has been saying these words all of her life!!

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  2. Thanks Chad for your continued updates. I for one so appreciate seeing the med protocol spelled out. Beth rattles off the meds as though she has been saying these words all of her life!!

    ReplyDelete