New Here... AFP Question

[DAWN82]

Robert - With Rob's initial AFP being over 13,000 - on the staging chart, he was stage IV. Any AFP >1,000 is considered stage IV. However, nothing had spread past the mass in his back, putting his type in a lower catagory. At our very first visit to Sloan I asked Dr. Kondagunta (who was originally our onc but has since moved home - she trained for eight years under Dr. Motzer) what his stage and type was, and was told that they don't like to classify because of the highly treatable type of cancer that this is.

Then about two weeks ago or so, one of the doctors on the team was checking Rob and mentioned how well his numbers are doing. Her exact words were, you were very sick when you first got here.

So I'm guessing they considered him complicated, and in need of the Bleo.

Mst -

I'm sorry you had such a long wait between Anthony's diag. and beginning of treatment. I actually can't even believe it went on that long - that's the equivalent of 4 rounds of chemo!!

Rob waited almost two months between the initial diag. in the first week of March to the I/O at the end of April, and his AFP shot up 2,000 points in that time. Between all the scans and faxes and initial appointments, it was so excruitiating to wait. We were told by the first onc that we went to (we live just outside NYC in Staten Island) that we needed to seek treatment elsewhere because the doctor said he just didn't have the confidence in any doctor here to even perform the I/O, let alone the RPLND. Then we met Dr. Sheinfeld and co. on Monday, and Rob had his I/O done by Dr. Dalbagni on Tuesday morning. They moved that quickly once they got his info. So I def. agree with you in saying that doctors know less than we think. I am a firm believer in second and third opinions and travelling to places where people have extensive knowledge. I was sure ready to book a flight to Indiana!!

But all this talk, and the new knowledge I've gotten from these posts just in the last few days, brings up some questions that I am going to ask when we go back on Monday.

Stacy
NY

i jsut wanted to let you know that Brian too, was told that he was very sick when he got to sloans. and he also saw the same Dr.! brian too is doing great with his #'s dropping!

Dawn

[DAWN82]

Hi Everyone -

What a terrific site you have here! I don't know why I haven't found it sooner, it certainly would have helped my husband and I these last few months!

My hubby Rob is 35, and after months (oct 06-feb 07) of intensifying back pain we found out the first week of March that he had TC. His AFP numbers were 13,600. HcG in the 800s. He had a left I/O at Sloan Kettering the last week in April w. a kidney stent and began chemo a week later. 4xBEP suggested; pathology showed the tumor was a mixed non-sem and teratoma with large areas of burnout. MSK does not like to classify stages and types because TC is "highly treatable."

During the first round, his AFP dropped from 13,600 to 1,700. In the third round, AFP dropped only from 78 to 35. He starts round four on Monday.
We're getting nervous. Shouldn't his numbers be lower than even 35? Why do they seem to be dropping so slowly with each progressive round? Has anyone else had this experience? Or is this all normal? Twice we had to wait an extra week for treatment because his WBC was less than 1.0. Could this be hindering the drop?

I'm a wreck because I know the next step if the numbers don't come down is probably VIP, and I have heard that BEP is a walk in the park compared to VIP.

Oh, I'm freaking out. My thanks in advance for any advice.

Stacy
NY

I AM NOT AN EXPERT, RECENTLY BRIAN'S APF LEVEL WAS FLUCTUATING BETWEEN 6 & 9, BUT HIS HCG WENT ALL THE WAY DOWN. HIS MOM CALLED MARYANN (DR. BOSL'S NURSE) AND SHE EXPLAINED THAT THE MOST IMPORTANT TUMOR MARKER FOR NON-SEMINOMA IS THE HCG. THE AFP CAN GO UP AND DOWN. SO YOU SHOULDNT WORRY IF THAT HAPPENS. AND IT SEEMS LIKE THE #'S A DROPPING EITHER HALF OR ALMOST HALF. THATS WHAT THEY WANT SOUNDS LIKE HE IS DOING GREAT

BEST OF LUCK ..

DAWN