New Here... AFP Question

[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

[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.

[Fed]

Usually a good place to start

Can't argue with that.

[k.strehle]

stage

my stage was 3 c. very lucky he found it when he did and started chemo (bep)and that was nov. 06 and my hcg was 212,000

[Scott]

At our very first visit to Sloan I asked ... 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.

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.

[Scott]

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.

I recommend that you check out pages ST-1 and ST-2 of the guidelines at this link for accurate staging information. Typical testicular cancer staging only goes to III, and high AFP doesn't guarantee higher staging.

[sldl1106]

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

[mstlyn]

That being said, I also know that not all doctors agree 100% on protocols, just like some hospitals use EP vs. BEP.

Very true that some doctors disagree. My sons oncologist wanted to postpone his RPLND to do more chemo when his AFP started rising again after chemo.

The surgeon and oncologist from U of M were ready to do surgery, but once they spoke to Anthonys oncologist, they thought maybe they were being too aggressive and tried to set up more chemo.

Through all the research I have done and information I have been given, we decided that whatever Dr. Einhorn says will go. We feel that is the safest way to go, so I showed the surgeon and oncologist Dr. Einhorns email, and we discussed our feelings about it, and Anthony had the RPLND.

Dr. Einhorn very plainly said that my son needed surgery, and if his AFP did not normalize, or if he has another relapse then he will need tandem transplant.
It was certainly not easy figuring out where to turn and how to know if we were getting the best information and care for Anthony. It was an extremely frustrating process, because so many doctors are simply not experienced with TC. This makes it very hard for TC patients and their caregivers, so the only thing we can do is educate ourselves and proceed in whatever way we believe is best. Not easy for sure.

So when the first day's blood results came back that Rob's WBC was .09, the doctor said, go home and rest, we'll see you next Monday. I really was surprised, after what I had read at ACOR. I said I thought we shouldn't delay treatment, and I was told his body would not be able to handle the chemo with such a low count. I have heard of people getting shots to boost their WBC to continue treatment, but they never mentioned it, and they keep telling us that they are pleased with the way Rob is progressing.

Anthony had neulasta injections every monday following each cycle of chemo.

It does sound like your husband is responding to the chemo, so that's what matters.
I don't know anything about your doctor or how much experience he has with TC. I know you said he is at sloan which is a great place.

When I first learned about how little so many doctors actually know about TC I was terrified. I asked my sons oncologist to consult with Dr. Einhorn and he told me that he follows einhorns protocols across the board, but then he tried to delay Anthonys chemo for a week due to good friday.

I asked him to put anthony in the hospital or whatever had to be done, but I did NOT want his chemo delayed. He set him up to have his last treatment at the hospital. There were many other things that came up here and there that told me Anthonys oncologist did was not very familiar with TC. He's a good doctor and was honored by the whitehouse, invited to a dinner there, a full newspaper page was devoted to this doctor. But TC is different because it is not a common cancer that many doctors handle, which you already know.

So I guess what I meant to say earlier is that while I was glad to be informed about not delaying treatment, I have no medical expertise (or basis besides what I had read) to contradict what the doctor instructed.

No, I understood that. I think most all of us have been in that position because TC is rare.
We have to depend on the doctors to do what is best, but unfortunately we have dealt with doctors that were not so knowledgable with TC and my sons initial diagnoisis was delayed, then his orchiectomy was delayed. There was at least a good 6 1/2 weeks from the time I took anthony to the ER to find out what was causing his pain, until he had his orchiectomy; which is long enough to allow embryonal carcinoma to spread around since it grows so fast.

Then his urologist wasnt even going to see Anthonys pathology until for another 5 weeks. I went in and pushed earlier and when they got the pathology they sent him for a CT of the abdomen and pelvis and found a mass. They didnt want to tell me what was found, and his urologist was out of town for another week at the time.
I said well Im not waiting around anymore, and we had to go out and find an oncologist for ourselves. He started chemo on Jan 29 which makes 13 weeks from the time I took anthony to the ER, which is inexcusable; and allowed Anthonys cancer to spread around; and I know there are many others that were delayed much longer.

I decided that from here on out, I won't just take any doctors opinion as gold. They are wrong sometimes. I think they are wrong much more than we even know.

I think that's wonderful that you were able to talk with Dr. Einhorn. I also noticed that your son did not have Bleo in his treatments. I wish Rob didn"t have to get it - the effect on his lungs is noticable. He is out of breath after climbing a flight of stairs and has a nagging dry cough.

Anthonys oncologist was going to give him BEPx3 but I asked him if there was another treatment equal to BEP that he could take to avoid the bleo. He said that 4xEP is exactly the same as 3xBEP, and this was confirmed by many on the forum, and on the TCRC pages as well. I believe there was someone on the forum that said BEP is superior to EP, but I dont know. Anyway, I think most doctors are willing to do either or, depending on the extent of the cancer.
I'm really sorry that your husband is having problems with his lungs from the bleo.
Sharon's son Russell has a lot of problems from the bleo too.
Hopefully it will not be a permanent problem for any of these guys that have had it.

I read on another post that Anthony recently had his RPLND surgery and had a hard time post-op. I wish you both strength and smooth sailing for the recovery.

Stacy
NY

Yes he had a hard time but it didn't last too long fortunately. The cause was from drinking too soon after surgery.
He is now recovering very well, up and running around with his friends again. Thank you for wishing him well, I certainly wish the same for you and your husband.

[sldl1106]

Acor

mstlyn -

I was thrilled to find the ACOR site when all of this began - it is where I got most of my information, and it also helped direct me to Dr. Sheinfeld at Sloan. The information they share is invaluable, and I think it is a great resource and service to people who are scared, curious, and have a lot of unanswered questions. That site literally saved my sanity.

That being said, I also know that not all doctors agree 100% on protocols, just like some hospitals use EP vs. BEP. So when the first day's blood results came back that Rob's WBC was .09, the doctor said, go home and rest, we'll see you next Monday. I really was surprised, after what I had read at ACOR. I said I thought we shouldn't delay treatment, and I was told his body would not be able to handle the chemo with such a low count. I have heard of people getting shots to boost their WBC to continue treatment, but they never mentioned it, and they keep telling us that they are pleased with the way Rob is progressing. So I guess what I meant to say earlier is that while I was glad to be informed about not delaying treatment, I have no medical expertise (or basis besides what I had read) to contradict what the doctor instructed.

I think that's wonderful that you were able to talk with Dr. Einhorn. I also noticed that your son did not have Bleo in his treatments. I wish Rob didn"t have to get it - the effect on his lungs is noticable. He is out of breath after climbing a flight of stairs and has a nagging dry cough.

I read on another post that Anthony recently had his RPLND surgery and had a hard time post-op. I wish you both strength and smooth sailing for the recovery.

Stacy
NY

[mstlyn]

Tammy and Anthony, you know, I saw that info on the acor site also, about not delaying treatment for any reason. I read that site backward and forward. But Dr. Motzer is my husband's doctor @ Sloan, one of the best, and I am not about to contradict what he thinks is right versus what I read on a website.

I certainly understand that and I also agree. I failed to let you know that the information on that site is the most accurate and the information comes straight from TC experts.

The site is the one that is most used by TC patients on the forum. I understand that you want to do what your doctor says, but I just thought you should be aware.

Of course I did not rely on one website for guidance in how to get the best care for my son. My son is my world.
I questioned doctors, read all the information I could, over and over, received tons of information from other TC patients and their doctors, and communicated with Dr. Einhorn via email.

I would not take risks with my sons treatment over something I saw on a single web site. When we love someone and they are stricken with something as serious as cancer, we are driven until we are satisfied that we are armed with all the best information to give them the best chance to be cured.

[Margaret]

I hope he will join in stacy...also, if you ever think it will help for him to have someone to talk to, I know that my husband Boyce (and many others here) would be more than happy to put a call into him.

We are thinking of you both.

[sldl1106]

Thank you!

Thank you everyone for your replies! It really helps me to know that as long as the numbers decrease by half we are on schedule.

Tammy and Anthony, you know, I saw that info on the acor site also, about not delaying treatment for any reason. I read that site backward and forward. But Dr. Motzer is my husband's doctor @ Sloan, one of the best, and I am not about to contradict what he thinks is right versus what I read on a website. Usually I am a very nosy, questioning patient/caregiver, but they were afraid he would end up hospitalized if they continued with the scheduled treatment. What happens in Rob's case is that his WBC drops later than they anticipated (they say about five days after treatment, his seems to be about nine).

Robert, I don't know what the percentages are. I was only told it was mixed; at the time I didn't know to ask percentages. I will ask this week. I know Dr. Sheinfeld did mention that he was going to get rid of whatever teratoma was left after 4xBEP.

I mentioned this website to my husband this morning - I think he might join to talk about some things bothering him. I hope he does!

Stacy
NY

[Margaret]

but I want to mention that chemo treatments should not be delayed no matter how low the white count is.

http://www.acor.org/tcrc/chemo.html

Really great point Tammy! And I agree 100%, even when Boyce's counts got to zero, it was still full steam ahead. Don't back down for a second.

[mstlyn]

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

Welcome to the forum Stacy. You will learn a lot and will find a lot of support here.
It sounds like your husband is responding to the chemo, but I want to mention that chemo treatments should not be delayed no matter how low the white count is.
Check this site for information about this and about anything else you want to know about TC, and keep asking questions if you are not settled with information you read.
Lord knows I have read just about every site imaginable about TC, and probably asked 10,000 questions on this forum too.
People here are wonderful and can do a lot to help fill in the blanks.

This link will take you to the message about delaying chemo. Just scroll down to the section "A Few Important Final Tips"

http://www.acor.org/tcrc/chemo.html

And this is the main link to the site.

http://tcrc.acor.org/

Tammy & Anthony

[Margaret]

Hi Stacy, nice of you to be doing all this research for your hubby, sounds like he has a wonderful support system at home . My husband's AFP numbers would drop in half of what they were before after each chemo cycle. Like your husband, mine also had 4 rounds BEP. So it sounds like from your post that he is doing really well and his body is responding to the chemo. Great sign . I know this is a really stressful ordeal to go through. Let us know if you need anything or someone to talk to.

Margaret