results so far

[keepcouchfresh]

hey ff, I'm finishing up round 3 of BEP this week

my markers prior to starting chemo was AFP 1381 and HCG 256, after one cycle AFP 356 and HCG 5, after the 2nd cycle AFP 19

so now my oncologist wants me to have a 4th round minus the bleo, EP

i was really hoping 3 rounds would be it but I guess I wasn't so lucky

[Karen]

kcf, good to hear from you!!!! I hope you have been managing OK with the chemo. If the AFP is normalized after round 3 will you still need EP or round 4?

[Chris'Mom]

Glad to see your markers going down....hang in there...Mary Ellen

[keepcouchfresh]

kcf, good to hear from you!!!! I hope you have been managing OK with the chemo. If the AFP is normalized after round 3 will you still need EP or round 4?

based on the round 2 numbers he wants to go ahead with the 4th round regardless I believe

[Margaret]

Hi Couch, glad to hear from you....you have not been forgotten here

My husband also REALLY wanted 3 rounds but got 4 instead.

In the end, we wanted to feel that it was a cure and were glad to whip all of it out. I know it is a bummer to get that news because we of course, have lived the same feelings. But your cure is coming and with any luck, this will take care of it.

We did end up with an RPLND too, but we always agreed as a family to be very agressive with our treatment. if you need anything, let us know.

m

[MRMRSU]

Hey Couch...sorry for the 4th round the docs are wanting, but if it means good riddance, then so be it. Stay strong and stay positive! Keepin' it fresh over here in Cali with happy hopes for your continued well-being!

[keepcouchfresh]

hey everybody I started cycle 4 of EP today, my AFP is down to 8 or 9. My PET scan came back negative. Are my numbers not going to nudge down anymore without RPLND (I thought PET scan ruled this out)?

[Margaret]

If you have more chemo then yes, your AFP may continue to go down. My husband's went to normal levels but they still thought he needed the RPLND. As a side note, as long as your AFP is under 15, they will do the RPLND...at least that is the cut off at Sloan. Best of luck on your last cycle, thinking of you.

[Fed]

hey everybody I started cycle 4 of EP today, my AFP is down to 8 or 9. My PET scan came back negative. Are my numbers not going to nudge down anymore without RPLND (I thought PET scan ruled this out)?

Did your original pathology contain teratoma? If so, the PET will not rule it out (teratoma will not light up on a PET scan).

As your AFP levels go down, the rate is going to decrease proportionally. If all of the active cancer has been decimated, then you can expect the levels to keep decreasing, only more slowly.

[Manny]

Couch - the doctors at Sloan told me that AFP goes down by half every 5 - 7 days. So if you are at 9 now, you should be at 4.5 AFP by this time next week which would be great because that is normal. They said anything below 7 is normal.

I hope that turns out to be case and you are clean by next week. As Fed said above, you should also check your Pathology report to see if you had Teratoma. They said Teratoma does not always show on the CT - and it cannot be removed by chemo. You will need an RPLND for teratoma.

[Fed]

They said Teratoma does not always show on the CT - and it cannot be removed by chemo. You will need an RPLND for teratoma.

It actually is on a PET. A teratoma will show up on a CT as an enlarged mass, just like any other tumor; but unlike other germ cells, it will not light up on a PET. Just wanted to clarify this point.

[keepcouchfresh]

I'm not sure if the pathology showed teratoma, I would have to find out

I had a CAT scan done first which showed a lymph node of concern near my kidney

then I had a PET scan which showed the lymph node near the kidney and an area on my chest

this last PET scan was negative

[AdrianB1971]

hi

My onc has planned 4 rounds for me but I changed on my own to 3 rounds. And I did it ! Success [full cure and no side effects]. If the drop rate of markers is higher than 80-90% per cycle and after 3 rounds the levels are normalized then the 4'th round is useless and dangerous

all the best

[keepcouchfresh]

towards the beginning of cycle 4 my oncologist informed me my AFP went to normal, I found out it was 5 the last time they checked.......I'm happy but a little concerned it's not a 2 or a 3

they're checking my markers again and I'll see where I stand in about a month, right now my red counts are very low and i'm anemic so they have me on aranesp

i'm a little concerned that my markers are going to shoot up again, but I guess time will tell

I still have lingering nausea and am tired all the time

[Karen]

kcf,
The markers do take a little time to normalize and 5 is fine. Another member leveled out at 7. I'm glad your cycles are done. You body took a wallop with all that and it'll take time to rebound.