Anthony's AFP

[oscar666]

Hi

Very Good News !
I am happy with your results!
The AFP dropped down to 12 after the surgery and the speed is really good.
How is going the general RPLND recovery? Is everything OK?

[Margaret]

hoping for great news Tammy!!

[mstlyn]

Well the AFP is 13.2 so it is slightly higher than the previous week which was 12.8

[mstlyn]

Well the AFP is 13.2 so it is slightly higher than the previous week which was 12.8

Actually I think it hasnt changed from the one previously done. I think that it just didnt have time to change again yet, and the slight difference is a diff. in labs.

I remember when Anthonys AFP first started rising after chemo.

U of M it was 10.8 and Anthonys oncologist retested it a few days later and it was 9.4.

This time it was checked on June 22 and it was 12.8 and the U of M Doctor checked it again on the 29 .. 13.2

It was exactly 7 days between tests. The half life being 5 to 7 days is my understanding, so maybe it would have read different had it been tested a few days later.

I won't be worried unless the next one shows an increase

[Margaret]

Well the AFP is 13.2 so it is slightly higher than the previous week which was 12.8

The way our doc at SK explained it to me...because I would panic a bit over it rising from test to test...is a bucket of water with blueberries floating in it. When you reach in to scoop up two hands full you may get 20 berries. That same day you may reach in and scoop up 18 or 22. The AFP is a scoop of sorts meaning that it can vary slightly from test to test. I think these numbers look encouraging!!! What is his doctor saying about next steps for him.

And I hope that berry comparision did not sound too lame. I promise it sounded a lot better coming from a cool doc at SK.

[sldl1106]

Tammy -

I think you're right not to worry and just wait. That's still a good number!

Margaret -

That is a good example that the doctor gave you. I'll keep it in mind so I don't panic in the future!

Rob is still feeling really poorly 6 days after the last round... he was supposed to drive to Sloan to do bloodwork today, but he called to see if he could go to the local Quest lab. First they said yes, but the NP just called to say that he should go into Sloan because each lab uses different criteria, and didn't want the results we have so far to be squewered (is that even a word? lol) by getting back a different number - perhaps higher than what it would have tested at Sloan. So moaning and groaning, he's driving to Sloan tomorrow. I also remember reading about that on acor/tcrc from someone's post about their son having gone to different labs.

[Margaret]

Stacy I am sorry he has to drive out there but I agree that using their lab is best. If you get a strange reading it will send you flying with panic and then off the SK you will go anyway to get it re-done. Better to be sure the first time.

I would drive him there if I could.

[mstlyn]

So, essentially, if I remember correctly, this was the first one that was scheduled for post op numbers. If that is the case, on schedule you would have seen the drop from 93 to 13 had you not had the one on the 22nd. Try to look at it that way, but have the next one on schedule. There is a reason they do them that way.

so essentially, this is the good news that you got a week or so ago . So hurray again !

Yes exactly; and that is why I am not worried about it.

[mstlyn]

The way our doc at SK explained it to me...because I would panic a bit over it rising from test to test...is a bucket of water with blueberries floating in it. When you reach in to scoop up two hands full you may get 20 berries. That same day you may reach in and scoop up 18 or 22. The AFP is a scoop of sorts meaning that it can vary slightly from test to test. I think these numbers look encouraging!!! What is his doctor saying about next steps for him.

And I hope that berry comparision did not sound too lame. I promise it sounded a lot better coming from a cool doc at SK.

Good comparison, Margaret, yet I understand that it is still only 3 weeks after surgery when the test was done, and each one of those were only within one week of the other. I am not worried.

As always, thank you for always being there for support HUGGGGGG

[mstlyn]

I know. when is the next one scheduled?

Nothing is scheduled yet. I have to make an appointment for Anthony with his oncologist to start regular follow up. I need to make that appointment right away to because it has been past 6 weeks since Anthonys port was flushed, so I'll know then when he wants to check the AFP.

He does have an appointment with Dr. Hafez for check up and CT scans around the end of the month, and Im not sure if he is having the AFP checked or not. He told us to get with the oncologist for regular follow up .. so ...

I did send a message to Dr. Hafez, asking him to do a consult with Einhorn

It will be better if he does it, that way he can explain things to Dr. Einhorn better than I can.

[mstlyn]

Tammy -

I think you're right not to worry and just wait. That's still a good number!

Margaret -

That is a good example that the doctor gave you. I'll keep it in mind so I don't panic in the future!

Rob is still feeling really poorly 6 days after the last round... he was supposed to drive to Sloan to do bloodwork today, but he called to see if he could go to the local Quest lab. First they said yes, but the NP just called to say that he should go into Sloan because each lab uses different criteria, and didn't want the results we have so far to be squewered (is that even a word? lol) by getting back a different number - perhaps higher than what it would have tested at Sloan. So moaning and groaning, he's driving to Sloan tomorrow. I also remember reading about that on acor/tcrc from someone's post about their son having gone to different labs.

Thanks Stacy

I know it's hard to make long trips for these appointments, especially when he isn't feeling well. That is correct that there can be differences from lab to lab, but from everything I have learned, and going by the difference in Anthonys from lab to lab, it is very slight.

Real example:

Anthonys AFP was 10.8 at U of M and 9.4 when tested at the chemo clinic he has been going to. These tests were each done within a few days (less than a week) of each.

Then the same thing happened here .. the regular chemo clinic test was done on June 22 and the AFP was 12.8 and on June 29 it was repeated at U of M and it is 13.2

Both times the U of M result is slightly higher than the chemo clinic.

I hope Rob gets feeling better very soon.

Tammy

[Margaret]

Good comparison, Margaret, yet I understand that it is still only 3 weeks after surgery when the test was done, and each one of those were only within one week of the other. I am not worried.

As always, thank you for always being there for support HUGGGGGG

Girl I still freak out a bit when Boyce's AFP goes from 2.9 to 4.1...so I am NOT one to talk . I hate seeing those numbers go up...I guess I always assumed they would only go down. That is why people 'here' on this forum can always relate. We have all been through the emotions and highs and lows that you are going through.

Hugs back at ya!

[sldl1106]

Tammy -

That was precisely why I mentioned it! I wondered if you had all the blood tests done in one place. Not like we all need one MORE thing to worry about with fluctuating results; it would be so nice if all the results came out the same no matter what lab we went to...

Rob's drive is much easier than other people's - we know how lucky we are to have their facility only 40-45 minutes away. We met a man who flies in once a week from South Carolina just to have one drug administered for one hour. That puts things right in perspective!

[mstlyn]

Nothing is scheduled yet. I have to make an appointment for Anthony with his oncologist to start regular follow up. I need to make that appointment right away to because it has been past 6 weeks since Anthonys port was flushed, so I'll know then when he wants to check the AFP.

He does have an appointment with Dr. Hafez for check up and CT scans around the end of the month, and Im not sure if he is having the AFP checked or not. He told us to get with the oncologist for regular follow up .. so ...

I did send a message to Dr. Hafez, asking him to do a consult with Einhorn

It will be better if he does it, that way he can explain things to Dr. Einhorn better than I can.

Well I got a call back from Dr. Hafez nurse. The message from the doctor in response to my request that he consult with Dr. Einhorn was this ..

Tell her to follow up with their oncologist!

And when I asked Anthonys oncologist to consult with Dr. Einhorn he had his nurse call me back with this message ..

"tell her I follow Dr. Einhorns protocols, across the board"

(but it seems that they don't know the protocols once first line chemo fails)

Oh well, as from the beginning, I am on my own to get things done the right way. Nothing new ... Thank GOD for this site AGAIN!

[mstlyn]

To let everyone know, I just got the latest AFP results for Anthony.

His blood draw was done Monday July 16 which is 5 weeks and 3 days since RPLND.

I was so scared to hear the results, and when I heard the lady on the phone say 3.2 I could barely speak to say thank GOD, and to thank her for delivering the best news. I have been sick with worry about the number because his next step would be HDC (tandem transplant)

For anyone that is not familiar with Anthony I'll just brief you. He WAS stage III non seminoma

After 4 X EP his markers normalized, but there was still a mass that the doctors thought was dead, and said it needed to be removed.

A few weeks before surgery however, his AFP began to rise again.
From 3.8 to 10.8 to 53 to 93 (these numbers were doubling by the week suddenly) just before he went into surgery.

His oncologist wanted to give him more chemo instead of surgery, but Dr. Einhorn GOD BLESS THAT MAN, said NO CHEMO.

He said that it sounded like Anthony had residual yolk sac tumor and that if the scans showed no evidence of cancer other than the abdominal mass, surgery "may" cure him. Obviously we went with Dr. Einhorns recommendation and now my sons AFP is NORMAL!

I know it has to be watched, but hey ...