Link - RPLND with elevated AFP

[mstlyn]

I just found this article about RPLND in patients with elevated AFP. This is not comforting if I understand it correctly.

http://www.nature.com/ncpuro/journal/v3/n5/full/ncpuro0481.html

[mstlyn]

I would like to add something else..

I have been reading on the forum that elevated AFP is not considered cancer until it reaches 25.

I am wondering if this is being confused with what is normal HCG, because on all of the marker reports, is says that in healthy males the HCG level should be below 25.

According to the site I posted .. http://www.nature.com/ncpuro/journal...cpuro0481.html

rising markers after chemo means a person is chemo resistent, and that is not good news.

[Margaret]

I hope someone else is here this morning because I know that some of the people here know more than I do....Robert, Scott, Fed...and many others.

But I can't let you 'go it' alone so I will sit here with you until help arrives.

They did tell Boyce that if his numbers rose a bit...not to panic at all, but that he may need one course of chemo to bring his numbers back to normal and then proceed with the RPLND. But again, this was what his doc felt was best and I am sure people do have RPLND with elevated markers. Every doctor is different. And we told ourselves, okay one more round of chemo and then surgery. We were okay with that because we could see the light that the end of the tunnel. His numbers held stable and we had the RPLND. But there are going to be many options for Anthony, i am sure of it. They may go ahead and do the surgery and then see how his markers do and if they stay a bit elevated then do another short round of chemo. I am not sure, but I know he is going to be cured and I will be here until others come to help with more information.

Hugs,

Margaret

[mstlyn]

Thank you Margaret, but I want you to know that as of yet I am not going to panic.
The first thing I was trying to make sure of is that the number AFP staying below 25 was not being confused with HCG. I already read on some other site that AFP can be detected in a small number of healthy males as long as it stays below 25.

Being that my son is already a cancer patient, it is difficult to tell myself that it's not cancer, but like I said I am not going to panic yet because it has not been steadily rising, and his HCG is still normal.

Yes I am still scared to some extent, until I know that he is in the clear. I pray that he is not chemo resistent.

His oncologist said he doubts that it is cancer because "he had very good treatment"

While it is comforting to hear that, naturally my belly is still doing a few flip flops because I know that the "good treatment" does not always work for everyone.

You don't have to sit on here waiting Margaret and you are a blessed soul for how big a heart you have. Big hugs right back at you!

I will still be watching for encouraging words.

Tammy

[Margaret]

I HAVE SUCH GREAT NEWS TO SHARE WITH YOU TAMMY!!!!!

I could not wait any longer so I called Dr. Sheinfeld to ask him about the rising markers. I really do trust his opinion. He told me that as long as they are below 15 he is a go for surgery in his eyes. He does the surgery on many people in the 10 range.

15!!! That was such a wonderful thing to hear! So I am sure your doc will agree and maybe that is why they are moving forward with the surgery. You sound good to go.

I hope this helps some.

Margaret

[mstlyn]

I HAVE SUCH GREAT NEWS TO SHARE WITH YOU TAMMY!!!!!

I could not wait any longer so I called Dr. Sheinfeld to ask him about the rising markers. I really do trust his opinion. He told me that as long as they are below 15 he is a go for surgery in his eyes. He does the surgery on many people in the 10 range.

15!!! That was such a wonderful thing to hear! So I am sure your doc will agree and maybe that is why they are moving forward with the surgery. You sound good to go.

I hope this helps some.

Margaret

Bless your heart, Margaret! Thank you for that information Now I will keep praying that it stays below 15. Thank you for reaching out.

Tammy

[Margaret]

Tammy...people need to rescue us...two nervous caregiving mommas in here alone is never a good thing..

Hang in there!

m

[Fed]

Tammy...people need to rescue us...two nervous caregiving mommas in here alone is never a good thing..
m

Sorry ladies. Busy day in the lab. I'm trying to get a hold of the article, but I don't think I can get access through DFCI. I'll try to lift it from the Medical School. I'll get back on this later on, but so far, it looks like you're in good hands (thanks Robert!) .

[dadmo]

Tammy:
Anthony will be fine. As other have said cancer isn't assumed until the marker is above 25. The operation should still be a go.

[Lori]

I haven't been reading the forum as regularly as I use to be so I'm sorry that I don't know your whole story. My husband's try with EP failed so he went to high dose chemo. We knew all along he would need surgery for a cure - what we didn't know obviously was the make up of the tumors in him. Even have 2 rounds of HDC, his AFP was still elevated at 37. Even with that IU did his neck/chest surgery. His markers were checked again 5 weeks later when he went in for the RPLND. The AFP was at 14.3 - again they operated.

Again, I don't know your whole story, but I hope that helps.

Lori

[Lori]

Robert, thank you for asking. I haven't posted any updates as I feel like I may jinx ourselves...but all is really well. HCG had normalized after HDC and the AFP normalized after the RPLND in November. Jon was finished with physical therapy in January and other than feeling a bit tired here and there he is back to normal. This week is actually a year from diagnosis. Starting on May 22nd with the dreaded "you have cancer" through all the tests up to May 25th with "you have TC". What a year its been! Our focus now is making the one year remission, then the 2 year remission, then...well everyone understands.

We've been asked to speak at the opening ceremonies of Relay for Life in June and are really excited. It's amazing how quickly getting a message out and raising money has taken on a whole new level of appreciation and passion.

Thank you again for asking and caring....I hope to post excellent news at our one year mark in August!

Lori