Wednesday, April 8, 2015

Catching up...

It's been a whirlwind since we started the trial.  I can't say my opinion of MD Anderson has improved much.  After two conversations with the lady that handles the insurance approvals and referrals there, and hearing how much work it is processing our paperwork... I went off on her.  She's been a little more responsive since, but not much.  The trips to Houston have become almost routine. We keep our suitcase packed with what we'll need for the trip, have bought our own little coffee pot and bring decent coffee with us.  Packing up the car, unpacking when we get there- it's all on autopilot now -- even have a favorite diner to stop at for a bite on the way.

Tex is doing well on the study.  We've had to fight every step of the way though.  He had an unexpected -- and opposite -- reaction to the infusions than anyone else on the study.   He didn't have any kind of anaphylactic shock that we were worried about with it having the mouse DNA, but his blood pressure did spike to dangerous levels.  And trying to get them to understand this is NOT OK to just let happen and deal with the fallout then.. but to be proactive and prepare for it has been an uphill battle.  Even at this point going into the end of the 2nd cycle, they have not completed the notes so the nurses know what to deal with, and it's always an issue trying to get him into a room where he can be properly monitored.  Now at this point, they anxiety of having to deal with them is enough to increase his (and my) blood pressure!  They did finally adjust the infusion rate and the last two infusions went better, there was still a spike but not to the point he needed intervention.

Overall, the biggest toll seems to be on his cognitive abilities.  We did see a neurologist.  He's having a hard time with "chemo-brain" and coming up with the words to communicate his thoughts.  Says sometimes they are just there.. but they can't come out of his mouth, or don't come out right - other times the word is just gone completely.  This could be partly from the medications he is taking for the pain - and she thought maybe some sleep deprivation, too; so we're going to be working on a better way to keep a schedule, some light chores to do, and see if that helps with the sleep patterns.

We did get GOOD news on the CT scan that was done - the lymph nodes in his chest/abdomen are shrinking!  His blood work continues to look good, and we'll continue on the trial.  The schedule is easier now, infusion only once every 2 months, and continue on his daily chemo pills. We'll still need to go to Houston once a month to renew medications and do blood work, but overall an easier schedule that will hopefully let him build his strength back up again.

With the exception of getting bronchitis, he does seem to be feeling better overall.  The food battle continues.  He'll still go days without eating but the doctors say as long as he keeps hydrated it's ok.  He seems happy to have lost about 10 lbs, I'm less than enthused about it.  His doc at MD Anderson also wasn't pleased.  The goal now is to keep him from losing anymore weight, he'll need everything he has for the stem cell transplant.

There's no word yet on when that will be; have to get him into remission first.  Doc at MD Anderson says they usually see that between 6 and 9 months; we're in month 4 now. By God's grace he'll be in remission by the holidays this year!


style='visibility:hidden;width:0px;height:0px;' width='0'/>