We met with the doctors today (Friday). They told us not to worry about her AFP number. It was probably a mistake to do the test. (We insisted on it) The main reason being that there really isn't anything they can do if it is 25. It is considered microscopic and we wouldn't be able to find it on a CAT scan or a PET scan. That it probably won't present itself until the number hits around 100.
They seemed pretty confident that it was liver regeneration at a number of 25. If it is around 60 to 100 it would probably be the cancer coming back.
They said that it would be very unusual (not impossible) but "very unusual" for the cancer to come back right in the midst of chemotherapy. "and good chemotherapy too"!
They told us that we shouldn't worry. Let them worry. But they know that is impossible.
But we feel better about it now. I would of been ecstatic if that number had been normal the last 2 times and not rising, but they think but won't promise or guarantee it, but that it is probably liver regeneration. So we will hope and pray for it to be liver regeneration. As I think back on it, her AFP fell so rapidly after surgery, and they got the tumor with clean margins there didn't seem to be any resistant tumor cells on the way down to normal. So how could anything make it through 2 more rounds of chemo. We won't test again till Sept 12th. They said that we have completed therapy!!! We would now go into monitoring mode. They even talked about taking out her port. We said we wanted to wait for a few good AFP #'s before we took it out.
Also she didn't have a urinary infection after all. Probably just joint pain or stomach cramping from the Vincristine. So some pretty positive news really! They even said we could delay the end of therapy Cat scan unless the AFP got above 60. So no CAT scan next week. Those CAT scans are miserable. You have to fast ASHLEY, then you have to get her to drink this contrast in an hour, then wait 2 hours to do the test. Not fun with a hungry, fussy baby. The next CAT scan will be in October then 3 months after, unless her AFP is high.
So if the next few AFP's come back normal or not too high, we will be back at the finish line on therapy!!! Unbelievable the roller coaster this takes you on!
Something to hope for!
Tony
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3 comments:
This is such a relief to hear (I only wish they had told you this earlier!). Thank you so much for sharing this information with us - we can't imagine what you're going through, but we're all deeply affected by everything you write and are right here with you until the end of this journey. I remain confident that Ashley will completely kick cancer's butt. :-)
I've been holding my breath wondering what else the doctors were going to say. It is a relief to hear them tell you how unusual it would be for the cancer to come back right now. I too remain confident that the cancer will be obliterated and never to return!!
Andrea
Definitely good news, and hopefully you'll be able to take their advice even a little bit and let them worry about what the numbers mean, and you concentrate on staying positive and optimistic as possible. My kids were listening to a disney song and these lyrics totally stuck in my head, "....no matter how your heart is grieving, if you keep on believing, the dream that you wish will come true". Cheesy, yes, but true!!!! :-)
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