Results of biopsy in- Need help.

[dadmo]

Two rounds of BEP will go quickly. When my son was being treated he said it felt like a Sat. or Sunday morning after a Frat party. I know it seems like he's taking on a lot but he could very well be in good enough shape to start school for the spring semester. The effects of the chemo wear off pretty quickly and the hair will be abck to normal by the time the weather gets nice. By next summer this will all be over.

[boyce]

Hi Tifany,

I am really sorry to hear that chemo will be necessary. It is a rough treatment, but the results can be curative.

Many others will tell you that all relationships get challenged through this, but many are also made stronger.

The primary side effects of the chemo are nausea, fatigue and suscptibility to viruses, etc. from low white cell counts.

Please ask him to check this board and others for resources. There are great drugs ro manage the side effects, and while the treatment is time consuming, it is a chance to fight this monster every single day.

Ask us for help, and get ready for a challenge.....but it is a challenge that can bring a great perspective and appreciation for life, and may bring you two closer.

Ask for help...that's why we're here

[a12curlyq]

Chemo

Well, Paul was able to talk to the oncologists office today. He spoke with a nurse who was very helpful and answered all of his questions.

His HCG is 2 and AFP is 5.9 at this point. Since there was the angiovascular invasion seen it was recommended that he does 2 rounds of chemo. Paul has decided that he thinks this is the best option for him. It just so happened that the nurse he spoke to had a son that was around the same age as Paul, who goes to the same college as Paul, and had the same major as him. She said if it was her son, this is the decision she would make, too.

Anyways, at this point, we're planning on Paul starting chemo on Dec. 10th.They said they're going to do 2 rounds of BEP. He's going to try to take Dadmo's advice and postpone a couple of his finals until after the winter break. He's still planning on going to school next semester, also, but he'll have to start a week or two late. Personally, I think he's putting too much on his plate right now, but I don't know.

He's happy because the office where he'll get his treatments has wireless internet, so he can bring his laptop with him and watch movies and surf the net. We're all a little bit nervous, I think. The nurse said it wouldn't be, "That Bad." But, I'm not sure what "not that bad" means. Maybe some of you can shed some light on what we can expect?

I'm kind of sad because the day he starts chemo, I start my finals week, so I'll be there but not until a couple of days in. I think it's going to be hard to concentrate on my finals knowing he's in for his very first treatment. He says "It's ok, I'll be fine, you just be lucky you don't have to sit there and be bored." But I tell him, "I know you'll be fine, but it makes ME feel better to be there." I'm sure some of you other caregivers know where I'm coming from.

Unfortunately, the stress of all of this is taking a bit of a toll on our relationship. I just keep telling myself that if we can get through this we can get through anything. Luckily, there's a lot of love in our relationship, and that keeps us pushing forward.

I'm so glad I found this forum. It's so nice to be able to talk to people who can help us sort through everything and make sure we're getting the proper care. It's also nice to be able to vent and talk to people who understand.

Thanks so much again,
Tiffany

[dadmo]

I just want to clarify something Fed said. A standard rounf of chemo is 5 days on and 16 days off for a total of three weeks per round. If Pauls is going to get 2XBEP his total cycle time will be 4 weeks. But he will need sometime after that before he feels better. The main problem is that he will be tired and it will be difficult for him to stay focused on school taskes. I know Paul is worried about next semester but the oncologists will want to begin treatment very soon as in before the christmas break. Paul may want to speak with the admins at his school and see if he can't turn in all of his finals work when he returns from the Christmas break. I can't stress enough that if chemo is the chosen plan it has to be started soon otherwise by default he will be in surveillance, which may not be a bad choice, but don't let the school situation dictate the type of treatment he gets.

[Fed]

Hi Tiffany,

Let me see if I can help setting this straight (and if it doesn't, let me know). Paul's choices are, as you have correctly stated, surveillance, adjuvant chemo (2xBEP) or RPLND. The reason the docs are recommending adjuvant chemo is because there was lymphovascular invasion and the vast majority of the tumor was compose of embryonal carcinoma. Embryonal carcinoma is a fast-mover, and the evidence of LV invasion would suggest that there may have been micrometastases. Another reason the docs may be recommending adjuvant chemo is because of his age. Younger patients sometimes have a tendency to be non-compliant if they choose surveillance. Granted, this is a blanket assumption, and Paul may very well be responsible and keep with his follow-ups, but I wouldn't be too surprised if the docs are making that assumption.

You do make a very important point:

There isn't any 'clear cut' treatment right now, so we have to try to figure out what's going to be best.

This couldn't be more true. In the end, Paul should decide what works out best for him. Since this was caught fairly early, pretty much every option is on the table. If he goes the surveillance route, he has to ensure that he misses absolutely no appointments so if there is a relapse, it is caught and dealt with promptly. The adjuvant chemo would last about 6 weeks, and there are side effects that could put him out of commission. RPLND would be useful for further staging, but like Diane correctly points out, it may not be curative due to the large amount of EC.

The bottom line is that Paul should make the choice that fits him best. Let us know if there are any other ways we can help.

[a12curlyq]

Dadmo,
This past Tuesday would have been 6 weeks from his I/O. We had some problems with the urologist getting us on track, but now we're with the medical oncologist and hopefully "getting this show on the road."

Diane,
I'm so confused!

Here's the deal...he had a CT-scan done which showed no signs of anything in his lymph nodes. The path report did show "angiolymphatic invasion" though. In the first few weeks his AFP only dropped from 33-31. I'm not sure why. This is why we thought we were going to have to do chemo. But now, a few weeks later, it's down to 5.9. The doctor said at this point we have the three choices of surveillance, preventative chemo, or the RPLND. I'm pretty sure his doctor recommended a preventative round of chemo because of the "angiolymphatic invasion" even though his blood levels were normal and CT-scan didn't show anything. I'm not sure when the next doctor's appointment is because we were waiting to see what would happen with his blood results.

His parents were the one's who talked to the doctor when he called back, so we didn't get any specifics. My boyfriend, Paul, will have to call them when they're open again on Monday to get some more details and talk to the doctor about the results. At this point, I'm not sure if surveillance is our best option, but I think that's what my boyfriend would prefer. He's quite worried about leaving school and all of those kinds of things...and just kind of worried and scared about any treatment in general, I think.

I recommended that he email doctor Einhorn, but I'm not sure how comfortable he is with that, and I would do it myself, but I don't want to overstep my boundaries.

I think you're right and that there isn't any 'clear cut' treatment right now, so we have to try to figure out what's going to be best.

Thanks for the information and kind words,

Tiffany

[DianeE]

Hi Tiffany,

You have been wonderful for your boyfriend through this! He's so lucky to
have you by his side.

I'm far from an expert in this, but I don't think one round of chemo is a standard procedure even as a prevention. An AFP reading of 5.9 is
within normal levels, and if there is evidence that the lymph nodes have
been affected, has an RPLND been mentioned? Of course there is that
high % of Embryonal that can diminish the chance of being cured by RPLND alone, since Embryonal can be a little bugger and travel past the lymph nodes, which would make 3 or 4 rounds of chemo the way to go.

I'm all for aggressive treatment, but at this point, I wonder if a clear cut
treatment option is obvious for Dennis. You'll certainly get some answers
from his oncologist. Do you know when his next appointment is?

I'm sure one of the guys or gals who knows more will chime in for you.

Diane

[dadmo]

Do you know when he's starting chemo? It's standard to begin around week six after the I/O.

[a12curlyq]

The doctor called back to say that the AFP has normalized. I'm not sure of the exact number at this point, but I think it's around 5.9. So, we're not sure what we're going to do at this point. Maybe a round of preventative chemo? We'll have to talk to the doctor again, I guess.

I wonder why it took awhile for the AFP to start dropping? Any ideas?
Any recommendations about what we should do at this point?

[a12curlyq]

Update

Today, finally, he was able to get in to see a medical oncologist.
First of all, let me just say that a huge weight has been lifted from my shoulders because we finally seem to be talking to someone who actually knows what they are doing.

The oncologist said that we're probably going to have to do 9 weeks of chemo. He's going to call later today (impressive, huh? I thought so) to tell us the results of the blood work he had done earlier. If the afp has dropped significantly, he could still do surveillance. The onc. recommended that even if that does happen that we do some preventative chemo because on the path report it had said that "angiolymphatic invasion was seen." He told us that means that tumor cells were seen starting to grow in the lymph nodes. Why we weren't told this earlier.... I Don't know, but I'm happy to finally be with someone who's actually getting something done.

Anyways, either way it looks like we're going to be doing some chemo. Chemo....it's such a scary thought. And even though I knew it was most likely going to come to this, it's now a reality. He's probably going to have to miss next semester in school, but that's ok, he's a smart guy and he'll finish it up next year. I, unfortunately, won't be able to do that because of insurance and scholarship reasons. It's going to be hard not to be with him day and night while he goes through that. I'll probably be coming home A LOT on the weekend, though. Me and my mom already discussed it, and she said she would make sure I was home as much as I could be.

I am feeling relief and sadness all at the same time right now. Relief that there's somebody who knows what they're doing, and we're going to get this taken care of once and for all. Sadness because it kills me that he's going to have to go through chemo and all that goes along with that.

He's being so tough right now. He's ready to take this on. Fight this fight, again, and be done with this. I'm so proud of him!

[a12curlyq]

Thank you for the kind words, Paul.

-Tiffany

[a12curlyq]

Thanks for asking, Scott.

He called the medical oncologist, and he asked to get an appointment as soon as he could. So, he has an appointment over our thanksgiving break from school (either the day before or the day after thanksgiving, I can't remember).

So...we still have 2 more weeks to wait.
It's hard for me to get this off my mind and think about anything else! I would feel so much better if we could just know what was going on, so we could start getting it taken care of and doing what we had to do, I would feel so much better.


Thanks again for the concern,
Tiffany

[Scott]

Any update, Tiffany?

[Scott]

However, the AFP was 33 before surgery and is now 31. The doctor said that normal was somewhere around 25 and that the AFP has a longer half-life than the other two. I don't think this lines up with what I've been reading and researching, but I could be wrong. We're about a month out of surgery, now, so it seems like that number would have dropped more. I'm not sure though. So, anybody have any information about AFP?

See this TCRC dictionary entry for more information about AFP. After the orchiectomy, AFP should drop by half every five to seven days until it's at a normal level. Normal AFP is less than 5 ng/mL (though cancer can't be assumed unless it's above 25). If it's still 31 ng/mL, it sounds as though there's likely still active cancer that calls for chemotherapy. Getting to a medical oncologist soon is in order. Hang in there, Tiffany, and let us know what you hear.

[a12curlyq]

Update- need more help.

Hello again,

I'm back with more questions. First of all, the university of Michigan agreed with the original findings of the pathology report. Also, the results of the CT scans came back clear. He's been on the testosterone for about a week now, and he feels a lot better. He had his follow up appointment with the Urologist today and is healing nicely. He has yet to see a oncologist, but he asked the urologist today to refer him to one, and he's going to try to make it to see an oncologist when we're home for thanksgiving break. All of this seems so long and drawn out, I wish things were moving more quickly.

The question that I have is about the results of the blood tests. I can't remember the exact numbers, but we were told today that the HCG and LDH are almost down to nothing. However, the AFP was 33 before surgery and is now (blood work down on Oct 27th, surgery was on the 9th) 31. The doctor said that normal was somewhere around 25 and that the AFP has a longer half-life than the other two. I don't think this lines up with what I've been reading and researching, but I could be wrong. It seems like that number would have dropped more. I'm not sure though. So, anybody have any information about AFP?


Thanks for any info,
Tiffany