If (1), then we will do 50%,50% for both when counts recover, and slowly increase 6MP if counts too high, but never exceed 6MP to be higher than 70%.
If (2), then we will slowly increase 6MP, but never exceed 6MP to be higher than 70%.
If (3), then we will keep that combination!
I'm writing this down so I will suggest this to doctor tomorrow when ANC is (hopefully) above 750. Lucas is doing rather well regardless of the low counts. He has been given IVIG whenever his IGG drops below 300, which happens every 2-3 months. After the one instance of IVIG reaction, it now takes 4.5 hours to finish the IVIG infusion. IV Pentamidine still takes more than 1 hour to infuse and 1 hour of observation afterwords. So we spent a full 8 hours in hospital this past Tuesday (2nd 4-week in Cycle 5).
6MP (%) | MTX (%) | Comments | |||
Cycle 1 | 8/5/2013 | 100 | 100 | ||
HOLD | 8/23/2013 | 0 | 0 | plts < 50, ANC < 500 | |
9/17/2013 | 50 | 50 | Restarted oral chemo | ||
10/1/2013 | 50 | 75 | ANC 3431, increased MTX | ||
10/15/2013 | 50 | 45 | ANC decreased to 784, decreased MTX | ||
Cycle 2 | 10/29/2013 | 50 | 50 | ANC 2948-no change | |
11/19/2013 | 50 | 75 | ANC 3182 | ||
Cycle 3 | 1/21/2014 | 50 | 75 | ANC 3040 | |
2/18/2014 | 50 | 75 | ANC 528 | ||
HOLD | 2/28/2014 | 0 | 0 | ANC 232-admit for fever | |
3/12/2014 | 25 | 38 | ANC 1100, plts 215. Restarted oral chemo | ||
3/18/2014 | 50 | 38 | Increased 6MP | ||
Cycle 4 | 4/15/2014 | 50 | 50 | ANC 2170, increased MTX | |
5/13/2014 | 75 | 50 | ANC 2450, increased 6MP | ||
6/10/2014 | 75 | 50 | ANC 876, Plts 143 -no change | ||
6/25/2014 | 75 | 50 | ANC 570 | ||
Cycle 5 | 7/7/2014 | 75 | 50 | ANC 1155 | |
HOLD | 7/24/2014 | 0 | 0 | ANC 186-admit for fever |
I am happy that you gave an update, but sorry to hear that you are still figuring out the right dose. Once again, it seems that our boys are so similar. We need IgG every 3 months as well. We are also on Pentamidine. I love that you have put together charts, and I should probably follow your lead. It seems like it makes it a lot easier to follow a pattern. I hope that you find the right dose soon. Those count crashes are miserable and worrisome. Our family sends our love to yours.
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