Tumor marker question

[emilyalex]

The news just keeps getting worse for my husband. After completing HDC, we discovered he had brain lesions. Although his HCG had been normal for over a month, his AFP never normalized (got close). Today we found out that now both the HCG and AFP are rising. His HCG is up to 16 and the AFP to 81. I'm getting desperate now, hoping for a miracle, even though I know we don't have much of a chance.

Any of you with a lot of knowledge about markers, do you think there is ANY way the markers rising could be due to the brain lesions? My husband began brain radiation last Thursday. His abdominal CT didn't show anything after HDC, so I'm confused. Everything I've read tells me that this means he won't survive. With his tumor markers so low, I just can't understand where else the cancer is now besides the brain. We'll get CT/MRI of the brain and abdomen in several days, likely after radiation. Also, if any of you have suggestions about further treatment, please send them my way. I feel defeated, but I'm not ready to give up.

If anyone has any thoughts on this, please let me know. Even if you think I am right that he probably won't survive, tell me what you think. The ups and downs of this is driving me crazy. Unfortunately, since finishing HDC, it's mostly been the downs.

Thanks for any advice.

Emily

[Scott]

I'm not ready to give up.

Good. There's no question you're up against a tough situation, but the fight is not in vain. Let's give the radiation a chance to do its job.

[Scott]

I know Lance Armstrong had surgery to remove his brain lesions. Has that been discussed?

[emilyalex]

Scott - although they haven't discussed surgical removal of the brain lesions, I think they are going to do stereotactic radiation (I think IU calls this Gamma Knife) after they finish the whole brain radiation. I'm all for brain surgery if they think that's where the active cancer is. I just get the sense from Einhorn and from what I've read on the internet that if the numbers are rising like this, there is active cancer that usually cannot be controlled, thus my worry about losing him.

Thanks for your help.

[Scott]

I have to admit I feel pretty helpless! The only other thought I have right now is to check for any relevant clinical trials.

[emilyalex]

Thanks for trying to help Scott. I appreciate it. I looked at the clinical trial info, but only got two matches and doesn't appear we qualify for either.

[ebfun7]

brain tumor

Emily,

My husbands tumor markers rose after he finsihed the first 4 rounds of chemo. At this time there was no evidence of anything new in CT scans but he did have a new brain lesion. At this time they did gamma kife to it and then he did whole brain radiation. Dr. Einhorn told us the brain along with the testes are a sanctuary site so the hope was that between the gamma knife and radiation the markers would normalize. His HCG was 1600 and AFP was 32 before the treatment and they both did normalize by the end. Unfortunatly they went up again 2 weeks later so he ended up doing high dose and stem cell. Hope this helps.

Also I do believe that Norris Cancer center in CA has a clinical trial that is for after high dose. I looked into when my husbands markers went up after HDC. Regardless here is the doctors e-mail that was running the trial last summer. You may want to check with him. [email protected]

Good luck and we are pulling for you.

Erin

[Hopeful]

Emily.

I saw your email and emailed you back. Give me a call. There is a procedure called Cyberknife (direct beam of radiation at the tumor only. It's very similar to Erin's mention of Gamma Knife. it's just the next generation of treatment.

Kevin had 6 small tumors in his brain. He had them Cyberknifed and they stayed dead.

Call me and I can help with stuff. You may have to do different procedures versus what the next courses of treatment are for testicular cancer. Also talk to Erin too. She's been through some different stuff than what Kevin did.

We are here to help and provide options.
Patti