Hi, Mark! Recently you wrote in a message to Ardith Hinton:

You may remember our daughter had ALL when she was three.

[...]

Yes, I remember your post on that subject. How long was
her treatment? It seems it averages between 2 1/2 to
3 1/2 years - girls typically get less treatment.

That part hasn't changed, apparently. Her treatment lasted for 2 1/2
years... but I was also told it took 3 1/2 years for boys.

I understand the usual dosage of prednisone is more conservative than
it was years ago, however, and from what you said in another echo I take it the
effect on your son's behaviour & energy level has been mostly positive. With a
higher dosage over an extended period of time, folks tend to act "wired". They
are sensitive to noise & light... they may be impatient & irritable... and they
can't sleep. I've seen similar effects with virtually everybody I've known who
has been in this situation regardless of their age or the medical reason(s) for
using such high dosages. According to our Merck Manual they must all have been
mentally unbalanced to begin with... but the oncology nurses know better. Like
parents, they have far more experience with the "hands-on" stuff... [wry grin].

We are on month 3 right now - just started a new phase.

We had basically three stages... (IIRC) induction, consolidation, and
maintenance. Would it be safe to say your son is on maintenance right now, and
things have settled down to a point where you can write to us about it...? :-)

Depending on the phase, there are some daily meds he
has to take at home.

Ah. It sounded to me as if he might be getting more treatment in the
hospital, and less at home, than our daughter did. But I remember one phase in
which we had to go to the hospital every day for a week or two.

I have entire care plan on printed out pieces of paper
that outline the phases and what happens on what day.

Good idea. If it's anything like our daughter's protocol, it's quite
a challenge to keep track of all this stuff. (Oncology parent joke... "if this
is Tuesday, it must be methotrexate.") With umpteen different drugs, each on a
different schedule, I was the only living person who had the drill committed to
memory. But just in case something unexpectedly happened to me, the oncologist
& I kept meticulous records of how these things were supposed to be done. :-))

Given everything that has happened, he is doing great and
headed in the right direction. That is all we can ask for.

Yes... and just as I feel I prepared myself years ago for the child I
had later, I feel you've done the same in your own way. Hang in there.... :-)




--- timEd/386 1.10.y2k+
* Origin: Wits' End, Vancouver CANADA (1:153/716)

That part hasn't changed, apparently. Her treatment lasted for 2
1/2 years... but I was also told it took 3 1/2 years for boys.

Basically the same, but depending on certain test results, the treatment times in the Maintenance Phase can be less.

I understand the usual dosage of prednisone is more conservative
than it was years ago, however, and from what you said in another echo I take it the effect on your son's behaviour & energy level has been mostly positive. With a higher dosage over an extended period of time, folks
tend to act "wired". They are sensitive to noise & light... they may be impatient & irritable... and they can't sleep. I've seen similar effects with virtually everybody I've known who has been in this situation regardless of their age or the medical reason(s) for using such high dosages. According to our Merck Manual they must all have been mentally unbalanced to begin with... but the oncology nurses know better. Like parents, they have far more experience with the "hands-on" stuff... [wry grin].

He was on the steroid for the first 29 days in a row. In addition to all the things you noted, he also was eating like crazy. This then means going to the bathroom like crazy and he ended up with a rash that wouldn't heal until he was
off the steroid.

We had basically three stages... (IIRC) induction, consolidation,
and maintenance. Would it be safe to say your son is on maintenance right now, and things have settled down to a point where you can write to us about it...? :-)

Is is on the "Standard Risk B-ALL". There is Induction, Consolidation, Interim
Maintenance I, Delayed Intensification, Interim Maintenance II, and then Maintenance.

Currently, we are in the Interim Maintenance I. It will be around the Nov/December timeframe when we enter Mainenance - which will be much less treatment.

Ah. It sounded to me as if he might be getting more treatment in
the hospital, and less at home, than our daughter did. But I remember one phase in which we had to go to the hospital every day for a week or two.

We were going to the hospital once every 7 days. Right now, it is once every 10 days. It varies - and there is a part where it is every day for 4 days in a
row - two weeks in a row.

Good idea. If it's anything like our daughter's protocol, it's
quite a challenge to keep track of all this stuff. (Oncology parent
joke... "if this is Tuesday, it must be methotrexate.") With umpteen different drugs, each on a different schedule, I was the only living
person who had the drill committed to memory. But just in case something unexpectedly happened to me, the oncologist & I kept meticulous records
of how these things were supposed to be done. :-))

I have all the CureSeach papers that plot out everything by day. That is basically by playbook for this entire process.

Yes... and just as I feel I prepared myself years ago for the
child I had later, I feel you've done the same in your own way. Hang in there.... :-)

Each week feels like a roller coaster. We go up (feel better) up until treatment, and then it is back down.. Then back up again. I just remind myself that he is still much better than the condition he was in when he was first diagnosed.

- Mark

--- WWIVToss v.1.50
* Origin: http://www.weather-station.org * Bel Air, MD -USA (1:261/1304.0)