Since we've been on this journey, I have decided that there is very little about medicine that is science.  It really seems like an art.  It drives me crazy.  Things should be exactly the same from place to place.  No luck though.

Oh yeah - that's a BIG no-no!  Everytime we'd go for our son's check-up the day before the LP - his pharmacist would always tell me "remember - no oral MTX tonight" as he got his oral MTX on Tuesday nights, LP's on Wednesdays.  At first, it was a hard habit to get used to, but then I got used to it.  My son always got neutropenic in the week to two weeks following his LP and then it would go back to normal. I can't imagine what his counts would be like if he got the oral dose as well.  Our Onc explained it as even though they presume not much crosses the blood/brain barrier, they do know that some does and that is why they specificially note that having the oral dose would be too risky.

Tonya, how distressing that YOU had to be the one to catch this! Like we all don't have enough to worry about and keep track of as it is....

Anyway, thanks so much for letting us know about it so we could check it out.... Andrew is on protocol AALL07P4, which I think is just like Justin's but Andrew is on study for a different PEG drug. His roadmap also shows IT MTX and PO MTX on Day 29, but with a footnote that says "RER patients only: receive IT MTX instead of PO MTX on Day 29 for first four cycles only" (not hand-written).

Andrew is on delay from DI... hopefully he'll start Day 1 of Maintenance next Friday!

Kristen

www.aboutthewin.wordpress.com

Most protocols are on 28 day cycles.  Technically there is no day 29/:  it becomes day 1 of the next cycle .  For most of the ALL protocols (I am assuming here based on what I have read and heard from other parents), oral methotrexate is omitted during the WEEK of ITMTX.  From speaking with other parents, I understand that there is much confusion over this to the point of some parents being misadvised or the issue is omitted by mistake during LTM.  I know of parents who became aware of this half way during LTM.   So, it is extremely important for the parents to ask for the most recent protocol, no matter what the nurses or docs think of your request.  I have always taken the approach that my child is not the only patient under treatement, mistakes are made, we are all only human and as a result , it is recommendable that the more informed and aware parents can be, the better.  I have even caught several mistakes even at the pharmacies after double checking doses and BSA's.

All the dosages during LTM, just like the initial treatment are determined by the BSA and tolerance levels.  I found that going to the satellite , one sort of may get lost in the paperwork of the main hospital,temporarily, so it is very advisable to have a copy of the protocol as well as staying on top of the dosage increases due to weight/growth.  On our protocol,  day 84 is written 84/1,;  , but day 1 for the next cycle of LTM.  My son has 22 weeks left, and let me tell you, I am definately counting them down minute by minute so to speak.

Keep upto date  on your protocol.

This is how it works for us, too. We also have had to go from 50% to 

75% and then to 100%. They wait like 2 weeks in between stepping up 

the dose.

I always learn something new here.  I have NEVER heard of not giving the oral MTX the same day as the IT MTX.  Not even a whisper.  We always give the oral MTX on Wednesday nights and Caitlin has gotten BMs/LPs on Thursday mornings and this is news to me.  Interesting...... will have to ask about it at the next visit.