Counts were still too low on 8/8 but rebounded on 8/13. We resumed chemo at 2.5 pills 6MP/week and 2 pills MTX/week and will recheck 8/27.
Lucas started preK on 8/13, same school with Alex in K. Lucas is doing very well! Love love love Lucas's new teacher! So much fun and so much energy! He made his first friend ever at school! He told me about his friend this past Monday. I confirmed with the teacher that his claimed friend does hang out with him quite a bit. This morning, I told Lucas that his friend must be waiting for him and he hurried up out the door. Very happy for Lucas for this important milestone!
Thursday, August 21, 2014
Friday, August 8, 2014
Still trying to figure out the doses for 6MP and MTX
The protocol strictly says steps of 100%, 75%, 50% and 25% will be taken to adjust doses for 6MP and MTX -- not having any text on what to do when the combination of these numbers do not result in ANC in the therapeutic range of (500, 1500). From the data our doctor and I put together, it seems MTX either works very slowly on Lucas, or Lucas's ANC is not very sensitive to MTX. A sweet spot for 6MP is very evident to be between 50% and 75%. I'm so glad our doctor agrees after this counts crash and chemo hold (15 days and counting), we will never raise 6MP to 75% ever again. We can try to do 6MP 50% and MTX 75% and see what happens. There will be three possible outcomes (1) ANC crash again (2) ANC steadily high (3) ANC within range (500, 1500).
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).
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 |
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