Wednesday, September 18, 2013

Restart!

I never thought I would find such comfort and rejoice to be able to put chemo into my little guy's body again.  But yes I did!  After 25 days of chemo hold (18 days days of 6MP and 2 doses of oral MTX before the hold), Lucas finally recovered to ANC = 1015 and we restarted both MTX and 6MP at 50% dose last night.  Lucas was so active Monday evening during our neighborhood stroll.  He hadn't been able to walk a distance on his own ever since diagnosis.   Monday evening, he kept running and running for a rather long distance. His little face was red and pumped afterwards and he told me he was running a race and finished first place.   Yesterday morning when I took Lucas for his CBC, it was also the first time that we didn't push the stroller and he didn't ask me to hold him during our hospital visit.

We didn't get to see a nurse practitioner or doctor yesterday.  We came straight home after finger poke.  I have left messages for our doctor for the dose that I think is reasonable.  And since Lucas learned how to swallow pills during the 25 days of break (I started with toasted bagel pieces, then we practiced with Predinisone during the steroid pulse), I calculated the daily pill dose while I waited for the results.  I was glad to find the dose came really close to my calculation when we picked up medicine from pharmacy.  6MP is 1/2 pills (25mg) a day for 6 days a week -- that's 47% of the dose he was on before, but since he has gained some weight during the 25 days break, it's actually less than 47%, so very much in line with what I think the dose we should restart with.  MTX is 2.5 pills a week, which is a little over 50% of the dose he was on before.  I do not suspect MTX was the culprit of counts crash for Lucas.  So if Lucas's counts will be higher than 1500 consistently, I will suggest to raise MTX dose first.   My evidence is when Lucas was on HDMTX infusion and 1/3 of the 6MP dose compared to LTM dose, his counts was stable around 1500.   When Lucas was on AraC infusion and 80% of the 6MP dose compared to LTM dose, his counts crashed and he needed 4-5 of blood transfusion and weeks of neutropenic.  

Today is also going to be first day of school for Lucas.  I will take a 1.5 hour (it would have been an hour if the parking at work is more friendly!) lunch break MWF to pick up Alex from his day school, pick up Lucas from home, send them to the part-time school.   Alex would have to have lunch in the car and he is actually looking forward to that (we pack lunch for his school anyway).  Lucas finds comfort in knowing that Alex would be in the same classroom with him as he still doesn't speak English.  Alex is excited that he gets to go to two schools and have two batches of friends and he would be the oldest in Lucas's class and be a leader there.  Jianwei will need to pick them up at 2:45 MWF and work from home when they take a nap afterwards.  

Today is also going to be first evening at AWANA for Lucas.  I will stay in his room with him.  Alex surprised me by remembering his first verse after he had to miss a class because of strep throat and I was not able to find his book and teach him more.  I hope Lucas's counts will stay above 1000 (or at least 750) and he can join us with our busy life routines.
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Friday, September 13, 2013

Still recovering

Today we insisted to have a CBC -- there's a kid on ALL list who was scheduled to be OT (off treatment) 9/16, who had been on chemo hold for 3 weeks because of low counts, and who was confirmed to have relapsed.  The desperation of that mother was felt by all parents on the ALL list.  We all live in the fear that the worse could happen, as if our initial diagnosis of a kid with leukemia was not dreadful enough.  Today is day 22 of chemo hold for Lucas -- we are getting rather anxious after we hear about that particular relapse story.

So we went today and I woke up in the middle of the night last night and couldn't fall back to sleep.  If one is afraid of something during the day, the night only makes it more intense.  The nurse practitioner convinced us to go straight home after the finger poke as she believed that this whole CBC was unnecessary and said they would call us with results.  The finger poke was 9:30am.  I called 11:30am, then 1pm, to leave a message to ask for counts.  I finally got a call close to 2 and everything was looking good.  Hgb 11.8, platelets 147, and ANC 435.  Not high enough to restart chemo today, but the numbers are improving and it looks really promising for next Tuesday (that's the day the nurse practitioner scheduled us to come in anyway).  

Lucas will still be home-bound and miss all the fun for the weekend.  Alex will go swimming with dad tomorrow morning, followed by lunch with his two best friends before they go to the family fun event at our church.  Sunday we will have our routine Sunday school -- morning at church and afternoon at Chinese school.  Alex has been more aggressive after he restarted preK and he hit Lucas again tonight. So I had to take away his privilege.  I gave him choice -- there are three fun things I planned for him this weekend (1) lunch and play date with his friends (2) sleep in the same bed with mommy and Lucas Saturday night, and (3) a trip to the fancy bakery for a treat with mommy after Sunday school.  I would have chosen to forfeit (2) if I were him, but he chose to let go of (3) and said he could do with one less serving of junk food.  I'm afraid that I instilled healthy eating to an extreme with Alex.  He refuses treats very readily now.  I think it's part of his personality though, because the same teaching doesn't show any effect on Lucas.

Here are some pictures my cousin took when he visited us around the time Lucas started his LTM.  Lucas has since learned how to swallow a pill and he does that so quickly with very little water.   Yippee -- no more pills to crush and less worry about liquid form of oral MTX causing sores on the lips and inside his mouth!












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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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