New Here... AFP Question

[mstlyn]

I can't help but be bothered by this. Of course they know the type and stage. It's essential information to decide the right course of treatment.

I was thinking the same thing. The stage of cancer makes a big difference as far as what they want to start treating with.

[sldl1106]

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. But they told us the course we would be on was 4xBEP and then RPLND.

The pathology of the I/O was mixed non-sem and teratoma with large areas of burnout. According to the nurse who read me the results, burnout meant that the tumor was dying as it was growing.

His original numbers before chemo were as follows:

AFP 13,600
LDH 271
HcG 900

LDH and HcG have been zero since first round.

I will check the link to the staging.

Send those questions!!

Many thanks -
Stacy
NY

[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.

[Scott]

Send those questions!!

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

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

[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.

[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]

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.

[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.

[Scott]

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

[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.

[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.

[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.

[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

[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.

[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