March for Babies

Tuesday, January 13, 2009

Moving Forward

Amanda's numbers were up enough at the end of last week that we decided to
go ahead with her outpatient chemo this week. They drew blood to check her
AFP again and we had a nice talk with her primary oncologist. We often see
her partners more than we see her but she is the one making all of the final
decisions about the course of Manda's treatment so it is nice to be able to
ask a question and get an answer rather then waiting for someone to check
with her and get back to us.

So here is what we know. The AFP (the cancer marker in the blood) is now
4.6 which is fabulous news. She said that number could fluctuate up and
down and even if it goes back up over 8 again it does not necessarily mean
something bad. They will just watch it. She said in young children that
number goes up and down but in adults it does not so don't panic if it goes
up. GOOD TO KNOW!!!! I am SO glad they told us this. The 4.6 is a smidge
higher than the 4.3 which signaled remission but close enough and with the
knowledge that it could have been much higher and still been Ok, we are very
happy indeed.

We also know that Amanda has a CT Scan and BAER hearing test scheduled on
the 20th. They are looking for any possible teeny tiny spec of possible
tumor in the lungs. They will have the pediatric radiologist scour the films
looking for ANY trace at all. The metastases in the lungs is what we are
most concerned about at this time since they went away with chemo and we are
hoping they stay away now. If the cancer were to recur, it would most
likely show up there first. She also said that if the cancer were to come
back it would probably show itself within the next two years. Not that it
is impossible for it to come back later than that, but more likely sooner
rather than later.

Armed with the current AFP and the results of her scans from next Tuesday
she will present Manda's case at the Tumor Board and get everyone else's
opinions on where we should go from here. Her thoughts at the moment are
that we should NOT do any more inpatient chemo. (YAYAYAYAYAYAYAYAYAYAYAY!)
This is due to the fact that the two drugs she gets inpatient are far more
toxic to the body and can cause significant hearing (hence all the testing)
and heart function damage (not good) even later on in life (she will need
testing throughout her life to watch for decreased function in both of these
areas). SO, we may still do two or three more treatments of outpatient
chemo like she is getting this week which are still very effective and do
not cause such serious side effects. She will give us more details after the
meeting of the Tumor Board. This is FINE with me. I would rather have a
room full of experts making recommendations and using their collective
knowledge. And, once again, Thank Goodness we live where we do and have
access to such amazing care and technology so close to home!!!

Eventually we will only need to go every three months for scans and blood
work to reassure ourselves that she is still cancer free. Someday we should
be able to drive through downtown without Manda calling out, "Oh, WE GO

Mere :0)

1 comment:

Anonymous said...

Sounds like your appointment went really well, and you have been given insight in to what to expect and I can't imagine what a relief simply knowing that must be to you.

I'm still thinking good thoughts for you all and that Manda's remaining chemo treatments are as smooth as possible!