results so far

[keepcouchfresh]

I'm almost 1 month removed from the last time I had chemo and I can honestly say I feel slightly better, that's the first time I can say that.........I can't say I feel normal or good yet, is that just about right for those who did 3BEP+1EP?

I haven't seen my markers yet post chemo

[keepcouchfresh]

Hey dude,
It looks like you are at normal AFP levels. Although it varies by lab, a normal AFP at DFCI is anything below 7.6 ng/mL, so to me a 5 is great. So did you have your last bleo push already? If so, many congratulations on finishing!

I did 3BEP and 1EP so no bleo this last cycle, mine was never an injection like most I guess it was always thru the IV

I'm glad my levels are normal it just makes me apprehensive like they're just ready to start rising again

[Fed]

Hey dude,
It looks like you are at normal AFP levels. Although it varies by lab, a normal AFP at DFCI is anything below 7.6 ng/mL, so to me a 5 is great. So did you have your last bleo push already? If so, many congratulations on finishing!

[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.

[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

[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]

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

[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.

[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]

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.

[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.

[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)?

[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!

[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

[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