New Here... AFP Question

[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

[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

[dannysbrother]

Stacy,

I was thinking about you and Rob on Thursday. You were just across the street from us! Next time I hope maybe we can meet up. Really glad to hear about Rob's response. I'm amazed he gets BEP as an outpatient. I guess it's more common then I thought, but definately was not an option for Danny. Rob must be a very strong guy!

We'll be hoping for all good things and a RPLND in the very near future.

Take Care,
-M

[Scott]

He also said everything is going the way it should w. Rob's numbers and they (again) are pleased with the response to treatment.

This is a difficult stretch, but it's great to hear things are going so well. We're pulling for you.

[Margaret]

Tough day for you I know Stacy. I always found the dr. appts SO draining! We did the Sk route with Sheinfeld and we can give you all you need to know and more if you have any questions. It does sound like you are in good hands. I hope if you need anything at all you will let me know. I am here anytime if you need someone to talk to.

Margaret
919-215-9464

[sldl1106]

Okay, we're home

Home from chemo and meeting w. Dr. Motzer.

Rob is stage IIIC, "poor risk," because of his tumor markers with the pT1.

Dr. Motzer still did not give us percentage of tumor because he said it wasn't relevant to anything; the tumor is non-sem and teratoma.

Large areas of burn-out mean the tumor was not strong enough to live; it died in the testicle, but not before spreading to the retroperitoneal area.

He also discontinued Bleo for this last round - Rob's PFT went down 24% and they stop using Bleo if it goes below 25%, and also he has developed a nagging cough, so Motzer said to just quit now, although Rob's lungs sound clear upon exam. He also said it wouldn't affect the treatment (I got nervous), Bleo generally just gives cisplatin a "boost."

About the seven-day delays in round two and three of treatment, Motzer said they studied patients between in the 80's and 1990, and published a study in 1990 in the Journal of Cancer (?) that patients with stage I TC could stand a seven-day delay between chemo rounds and suffer no loss of the treatment's effectiveness.

He also said everything is going the way it should w. Rob's numbers and they (again) are pleased with the response to treatment.

Rob goes back for blood tests the 5th, the 12th, and then on the 19th we meet w. Motzer and Sheinfeld to discuss RPLND.

Also interesting to us, Sloan accepts an AFP of <15 as a normal level. I said I thought it needed to be at least below ten and he said no.

Thanks for everyone's help in what questions to ask and what we should have known by now.

[sldl1106]

Robert -

No, it is not mentioned. Rob is coming home with new reports today - his AFP number turned out to be 15,047 pre-I/O, which we were never told. As of yesterday, pre-chemo, AFP was 26. Thank you for asking about the chorio, though.

BTW, the CT scans of the chest were all clear.

Dadmo -

Looks like we'll have to lower the volume on the Yankee games! I'm looking forward to meeting w. Dr. Motzer on Thursday.

[dadmo]

It will be interesting to see Motzer's work. He is without a doubt one of the top researchers in this area and I believe that when he makes a statement it's from a position of knowledge. I know when he treated my son he said to avoid loud music or tv, he said it wasn't published but the ears were extra sensitive during chemo.

[Scott]

Well, I hope you're feeling more secure now! Knowledge is power. Keep us posted as you learn more.

[sldl1106]

Okay, I am starting to feel more like a grown-up now. I can't tell you how shocking it was to feel as though we knew what was going on, and then I join this group and get hit with a ton of questions that I had no idea we should know! Makes you very insecure, I can tell you.

So here's what I've assessed by the reports available to Rob today that he brought home:

1) The pathology of the I/O was a pT1.

2) Pathology of L I/O names tumor type as "mature teratoma; multifocal areas of scarring are also seen, indicating regressed (burnt out) germ cell tumor."

3) The doctor's report states: "...prior to I/O, the patient has at least an intermediate risk germ cell tumor and it is likely that he has a poor risk tumor (pending post orchiectomy tumor markers and restaging CT scan)."

4) I followed the charts on www.nccn.org (THANK YOU SCOTT!!) and can almost pin him down to either a IIIB or a IIIC.

Unfortunately for us that means the difference between intermediate and poor risk, but we'll get much more info on Thursday meetin w. Dr. Motzer.

Thank you so much for all of the concern.

[sldl1106]

Dadmo -

I will most certainly ask Dr. Motzer on Thursday if/where we can get a copy of that to share with everyone.

Richard -

Finally, I asked him about the consequences of delaying a cycle. He told me that,
"There is published data that delaying a cycle by more than 7 days does worsen the results. There is also data that a lower cisplatin dose intensity, measured in mg/m2/week, does worse. The standard EP dose intensity is 33 mg/m2/wk and we know that 20/mg/m2/week is worse...

Rob's cycle was not delayed more than seven days. He has never had a lowered dose of EP either. The Bleo, however, was not administered during the off week. As it is, Rob said he barely passed the PFT today. They gave him a dose of Albuterol and then retested and his numbers were fine.

He is coming home with paperwork involving pathology, etc. I'll see what I can gather from that.

[dadmo]

Can you ask if that information has been published? Just let the doc's know that your on the forum and want to share any published info.

[sldl1106]

Well, one question is answered. First, the appointment w. Dr. Motzer is Thursday, so we'll hold off most of the questions until then.

However, today Rob is in (he drives himself in Mondays and Tuesdays, we stay at a medical hotel on Wed and Thurs nights together and come home after Friday's treatment) and being seen by Dr. Slovin, who is a member of the TC team. He told her of everyone's concerns that protocol was not followed and asked why he was allowed to skip a week in each of the last two treatments. She told him that Sloan has done extensive research and trials and has found that there is no difference in the effects of treatment in waiting one week in patients who have low WBC. She said they prefer the patients' WBC come up organically and not to induce it medically, and then continue. However, if his WBC was still low at the beginning of week two (today), they would boost it artifically and continue treatment. She also did mention that IU does not employ that practice.

We're fine with that answer.

I'm emailing him some of these questions now to see if he can get them answered while he's there.

[Scott]

Send those questions!!

Remember this very comprehensive list of questions to ask about chemotherapy from the TCRC:

http://tcrc.acor.org/chemoquest.html

[Scott]

I do not know why they did not give us the staging. As I mentioned, they only said that they don't like to give staging w. TC because it is highly treatable.

I've never heard anyone else report that. I have to wonder whether "they" really don't like to give staging information or that one doctor was trying to shield you. Some patients actually prefer not to know and just focus on getting the job done. I'd rather know what I'm up against first, and then focus on getting cured.