Tuesday, September 10, 2013

Recovering

Lucas hasn't needed blood or platelets since last Tuesday.  But his counts are still too low to restart the major chemo medicine.  No time to write a blog entry, but here is the question I posted on the ALL board.


Lucas started LTM (COG 1131) on August 5th.  He was on the typical chemo drugs for 18 days before he got on chemo hold because of low counts.   He has got 3 blood transfusions and 3 platelets transfusions during the hold.  Today is day 19 of chemo hold and his numbers are finally recovering with no need for transfusions.  Our doctor thinks it’s likely that we can resume chemo next Tuesday.  I have two questions.  (1) should we try to push for an earlier day for CBC and possibly restart the chemo sooner than next Tuesday(today ANC 175 and platelets 53)?  The doctor thinks coming to clinic often is frustrating, but we actually would feel more comfortable to shorten the hold.  (2) the doctor has decided to start Lucas with a lower dose.  I know it’s against the protocol since this is his first crash.  But we had second opinion and discussed this – let him stay on a lower dose is better than on and off.  We also have data showing his possible high sensitivity to 6MP during consolidation and DI with 4-6 transfusions needed each of the three times he was on 6MP/6TG combined with AraC; tested normal for TPTM.  We haven’t discussed the actual dose yet, but by looking at the data, I feel like 50% would be a good starting point -- 18 days of 6mp needs potentially 25 days of hold, so half would be more than enough.  The doctor did use the term "sprinkle" when we start chemo again but do they normally restart with even less than 50% at first adjustment?
I know this is probably a question for the doctors.  But I always feel that I need to be an active part in such decisions since I know my child the best and i study his numbers very closely(sorry I'm a statistician by training).  Anybody could share their experience in chemo hold in LTM due to low blood counts?  (1) the duration of the hold (2) the dose they try after the hold (for 6MP and oral MTX) and how the doses get adjusted going forward.    Thanks!



In the table below, I assume his hgb increases by 2 and platelets increase by 26 with 1 unit of transfusion (some times he gets 1.5 units of blood).
DateWeekdayMeds6MP (days of hold)Bactrim/PentamidineTransfusionhgbhgb+Plateletsplatelets+WBCSegsBandANC
5-AugMondayVincristine, started steroid pulse100%9.3243342171770
6-AugIT MTX100%
7-Aug100%
8-Aug100%
9-Aug100%
10-Augfinished steroid pulse100%Bactrim
11-Aug100%Bactrim
12-Aug100%
13-Augoral MTX100%
14-Aug100%
15-Aug100%
16-AugFriday100%blood6.49.41402.952302378
17-Aug100%Bactrim
18-Aug100%Bactrim
19-Aug100%
20-Augoral MTX100%
21-Aug100%
22-Aug100%
23-AugFriday19.424502.47151824
24-Aug2Bactrim
25-Aug3Bactrim
26-AugMonday4platelets8.28341.3544754
27-Aug5
28-AugWednesday6blood7.39.3341.3282390
29-Aug7
30-AugFriday8platelets9.720461.6200320
31-Aug9No bactrim
1-Sep10No bactrim
2-Sep11
3-SepTuesdayVincristine12blood + platelets8.111.133591.852126
4-SepWednesdayIT MTX, started steroid pulse13
5-Sep14
6-SepFridayHgb recovered15IV Pentamidine11.6431.2131168
7-Sep16
8-Sep17
9-Sepfinished steroid pulse18
10-SepTuesday1911.6542.570175
11-Sep20
12-Sep21
13-Sep22
14-Sep23
15-Sep24
16-Sep25
17-SepTuesday
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