We heard some talk last week. One parent from our support group had
received a phone call about it. There was some more concrete
information posted in an online support group. It is now confirmed
that changes are coming to the AAL0932 acute lymphoblastic leukemia
standard risk protocol.
Under the new
guidelines, two chemo medications will change frequency, and two
chemo medications will remain unchanged. Under the current
guidelines, E receives dexamethasone, and vincristine every 4 weeks,
methotrexate weekly, and 6MP daily. When the new guidelines come into
effect, E will only receive dex, and vincristine once every 3 months
at his lumbar puncture. Methotrexate and 6MP doses (which are given
orally at home) remain untouched.
Dex is a steroid,
and though he reacts slightly differently to it every time, it
generally makes him extra hungry, tired, and cranky. Vincristine is
another chemo drug which is actually derived from a flower,
Madagascar
periwinkle. E, usually experiences a bit of constipation after
vincristine, which we treat by giving him a few doses of stool
softener. Other side effects can include tingling in the extremities,
hair loss, and unclear thinking due to low blood sodium.
From what I
understand, clinical researchers, and oncologists have determined
that there is no difference in expected outcomes, or 5-year survival
rates between groups of kids who receive dex & vincristine
monthly versus those who receive it every 3 months. The general
belief is that the treatment is over-dosing leukemia patients, and
they are able to switch to a lighter treatment schedule without
changing survivability rates.
I don’t feel too
worried about the change in medication doses. I’m certain that this
is an Ontario-wide change, and I even think that it is a North
America-wide change, but I’m not 100% on that one. I have every
reason to believe that the researchers and oncologists have the best
interests of these children in heart and mind, and this was not a
change that was entered into lightly. Due to the negative side
effects, long-term effects, and late-term effects of these drugs,
it’s beneficial to take less of them if it does not change the
treatment outcome.
What DOES make me
worried is that along with this decrease in medication frequency,
comes a decrease in bloodwork frequency. We’re currently going to
our satellite clinic every 2 weeks to do bloodwork, and the new
guidelines will drop the frequency to every 4 weeks. It was a bit of
a stressful transition from frontline treatment to maintenance,
because we went from weekly visits for bloodwork to bi-weekly visits.
I wasn’t expecting to drop to monthly visits until October 2020,
when E reaches end of treatment. I don’t know what to think about
this right now, other than worry. I feel uneasy with the thought of
only visiting once a month. Obviously, we’d go in if he was unwell,
or had a fever, but I’m concerned that there is going to be less
eyes on his progress, less data points to track his levels. I’m
worried that the extra space between visits might cause something to
be missed.
I was at our
satellite clinic this morning with E for a quick finger poke for a
CBC to check his counts before his lumbar puncture next week. Spoiler
alert: his counts came back fine, so it looks like our SickKids visit
is a go. I was speaking to our nurse practitioner & RN about
this, and they both said they don’t mind us continuing to come in
every 2 weeks for bloodwork. E won’t be receiving chemo at our
satellite clinic anymore, bloodwork is done with a quick finger
prick, and only takes between 5-10 minutes. So, I think we are going
to push for continuing the every-2-weeks-bloodwork when we meet with
the oncology team next week. Or, we’ll put our foot down, and just
say we’re going to continue, but I don’t expect we’ll have to
push back too hard on this.
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