IVIG

Lucas came home Saturday afternoon with ANC 360 -- low but stable.   I took him for finger poke CBC today and the oncology phone nurse told me his IGG results together with the CBC result.

ANC is 890 and we will restart chemo with oral MTX 2pills/week on Tuesdays, and 6MP 1/4 pill/day, 6 days a week.  So essentially 45% on MTX, and 25% 6MP.

The bigger question is for IVIG.  His IgG level is 221.

The concept of low ANC is neutropenia, which is different from low immunoglobulin G.

For low IgG, he can receive a blood product called IVIG to boost his IgG level, which in turn helps with his immune system.

I called our oncologist today and got some questions answered:

Q: How often do kids under chemotherapy need IVIG?
A: It depends.  For infant or Down Syndrome ALL patients, it's quite common for them to need IVIG.  For the rest, it's not very common.  Usually doctors don't test IgG level unless a patient gets sick often and needs to have chemo hold often.
My interpretation: I really pushed for the test.  I know I'm the kind of parent who does lots of reading and probably get too much information if there's such a thing.  A lot of ALL parents never heard of IgG or IVIG.  IVIG is expensive (about $10k per dose depending on the size of patients) and the doctors need to prove to insurance company that it's needed.  IVIG also has its risks (mostly allergic reaction).  Some people with low IgG do not get sick often.  Quoting a parents on ALL LIST: "Even if his IgG levels are low, unless he's getting sick from it, they aren't going to give him IVIG (a blood product) unless he really needs it.  IVIG comes with its own set of risks  and issues -- no blood product is risk free.  And it's not really the number of antibodies (IgG, etc.) in the body that's important, it's how well they function.  Someone can have very low IgG numbers and not get sick as they are functioning well, whereas someone else with higher IgG numbers can be very sickly because theirs don't function properly.  "

Q: How often is IVIG given and how long will the regimen last?
A: It's usually given every 4 weeks (schedule sync with Vincristine).  IgG level will be monitored and the schedule might become every 8 weeks.  For some kids, IVIG needs to be given a few months after the chemo ends.

Q: How soon will IVIG start to work?
A: Within a day that it's given, it will start to work to boost immunity.

Q: You suggested us to wait for two weeks to get IVIG together with our once-every-four-weeks Vincristine and Pentamidine.  I feel we should act now since we know he is low on IgG.  Do you feel the urgency?
A: Unless you absolutely feel that you can't wait for two weeks, I don't see the urgency.  His IgG is 221 so he has some immunity.
My own take: If he gets it on 10/29, he will be ready for the flu season.  We will be extra cautious until then.

Q: Will one develop dependency on IVIG?
A: Not likely.  Chemo is what's suppressing the IgG level.  As soon as the drug gets out of his system, his IgG level will improve.

ER with admission

Lucas is hospitalized again for febrile neutropenia -- no fever for 24 hours and waiting for ANC to stop dropping (2254 Monday pm, 520 Thursday pm, 370 Friday am).  Cold with cough for almost two weeks. Tested positive for rhinovirus (nose swab) and negative for pneumonia (chest x ray).  The whole family went to visit this evening.  Alex practiced his Chinese writing at the hospital while Lucas played with my pen pouch.  The nurse will get extra blood sample to test IgG level tomorrow am.  Overall Lucas has good spirits and appetite.  We hope for cough to go away and quick recovery for ANC.  Hemoglobin and platelets didn't drop so I felt this ANC drop has more to do with viral infection than from chemo.  6MP is on hold since Thursday evening and will wait until it recovers to 750+.

Night sweat and a common cold

Looking back, there are a couple of early signs for Lucas.   In May 2012, I took Lucas to the pediatrician office, requesting a blood drawn to rule out leukemia -- because he had frequent nosebleeds and our friend Kelly's daughter was diagnosed with leukemia in April.  The CBC looked great back then.  By the end of summer, the nose-bleeding became even more prominent and we got him cauterized at an ENT.  Starting September 2012, Lucas would wake up more at night, and I noticed heavy night sweats happening often.  That's also the time when he first started daycare, so we thought the night time wake up (usually 3am-4am) was a consequence of major lifestyle change.  I did still worry about night sweat.  Looking back, it's a early sign.

cancer – night sweats can be an early symptom of certain cancers like lymphoma orleukaemia, although this is unusual and cancer would cause other symptoms too, such as unexplained weight loss
-- from NHS UK

The night sweat didn't completely go away after the treatment started and Lucas came to remission.  Every time Lucas is drenched in sleep, I stay awake worrying.  Finally a parents on ALL board mentioned night sweat might be a side effect of steroid.   I looked it up -- it is indeed a possible side effect of Prednisone.  Lucas started this steroid pulse Tuesday night, he started to have night sweat on Thursday.   I felt somewhat relieved, though I will keep monitoring the night sweat issue.  According to TCM, night sweat is a sign of deficiency in Yin (as in Yin-Yang), which can be a result of a variety of disorders.

Lucas started to have cold symptoms last Saturday.  Running nose, congestion.  By Thursday he started coughing a little.  I had terrible sore throat Monday evening and coughing started Thursday also.  His congestion and coughing is very hard to notice today so hopefully that is the end of this cold.  He only went to school on Wednesday last week.

His ANC continued to look good on Tuesday and we increased PO MTX to 3.5 pills (about 75%), while 6MP stays the same.  With this cold, we would expect a drop in ANC when the cold ends (bone marrow would try to produce more WBC to fight infection, while chemo is trying to suppress it, so the bone marrow would decide not to produce as much).  We have a standing CBC order which means we can go to clinic to get finger poke whenever.  We will go on a weekly basis every Tuesday morning (now think about it, I will call to check if the close-to-home Children's Hospital open during evening and we could just go Monday evening).

Lucas went to a friend's house for a big gathering tonight for the first time after his diagnosis.  He woke up from his nap at 1:45pm and immediately asked if it's time to go.  He had to wait till 5:15 when I finally told him that we were ready to go.  He didn't want to come back home once he got there.  He ate a ton -- he was the first one to start eating and last one to finish.  He fell asleep on the trip back home. I had to wake him up for 6MP.  When I did, he didn't open his eyes, but opened his mouth instead.  I put the half-pill in, give him his straw cup.  One small sip of water did the job.  He is such a good boy when it comes to taking medicine.  So good that my heart aches every single time!