Tumor markers - please help

[emilyalex]

My husband just finished High Dose Chemo and Stem Cell Transplant at IU. As of last Monday, his HCG was 1.7 and his AFP 35. It appeared from his CT scans that nodules/tumors were significantly smaller and they did not mention new tumors. So yesterday (Saturday), we went in for labs and they did markers again and they had gone up, to 2.7 and 67. The doctor who called us from the hospital was confused, said he couldn't understand them going up so soon after chemo.

Has anyone else had this kind of experience and had the numbers go back down? Is there ANY way this could be a lab error, or just a fluctuation? The news had been so optimistic so far, we are having a hard time understanding this development. Any advice or information would be appreciated. We are supposed to re-do markers tommorow before we fly home and we are praying for better news.

Thanks.

[dadmo]

Was the blood work done at the same lab as before? That can always cause a flucuation.

[emilyalex]

Thanks for answering Dadmo. I wish that were the case, but the same lab has done the testing. The doctor called again today and said that he is going to speak to the lab supervisor tomorrow, just in case anything was out of order there. Maybe the weekend crew did something out of the ordinary or different? We usually always had markers done on Mondays. I could tell the bone marrow transplant doctor, who called with the numbers, seemed at a loss, too. We are going to have marker run again tomorrow and hope for a change.

We have worked so hard to get through the High Dose Chemo and now my husband seems to feel very defeated. It's the first time through his entire treatment that his attitude has been so down. It just seems too soon for the numbers to go back up after two rounds of HDC. It has barely been two weeks since finishing HDC.

Emily

[dadmo]

It very well could be that a different crew ran the tests. The doctor should run the test again to see if the results are accurate.

[emilyalex]

Thanks Robert. We are still in Indy, preparing to go home tomorrow evening. We are going to stop by the hospital for labs before heading to the airport. I will definitely post the results of his markers tomorrow, as soon as I can get to the computer.

This has been such a difficult struggle and I had managed to stay strong and hopeful looking at the possibility of beating this. Now that we have had this issue arise, I can feel my strength fading. If we had gotten the news last week that his CT scans looked worrisome and his numbers hadn't gotten close to normal, I would have been more prepared for bad news. Hearing from Dr. Einhorn that we really don't have any good treatment options if the numbers are really going up just threw me.

I hope I am just getting worried too soon, and that tomorrow will bring better news.

Emily

[Karen]

Emily,
I hope tomorrow's numbers are back down. Sending thoughts and prayers your way.
Karen

[Hopeful]

Emily

It's not common but BHCG #'s can go up after HDC/stem cell and then come back down. This has happened to someone who went through HDC last year. They got a higher # the day they left from the prior test and a few days later the bhcg went back down.

If you're at Indiana, talk to Dr. Einhorn or who Judy or the BMT doctor.
Patti

[ebfun7]

Higher HCG

Patti (hopeful) is talking about my husband. :-) Hi Patty!

Last year, the day we left Indiana after HDC my husbands HCG went up from 3.3 (where it had been holding steady and was the Monday before) to 17.1 in 1 week. 1 week later it was drawn again and it was back down to 3.9 and has remained normal ever since. Hope this helps.

Erin

[emilyalex]

Thanks Karen, Patti and Erin for your replies, too. We had the numbers re-tested this morning and the HCG moved down a bit to 2.3 and the AFP moved down a bit to 59. So although they didn't go down much, we're moving in the right direction.

After a weekend of worry, when Judy (BMT Nurse Practitioner) walked in this morning, she said that they have had this happen with several patients recently. Apparently a lot of people are having markers go up right before they go home, and then they go down over the next few weeks.

I think it's time for me to develop a different coping strategy with all of this, because obviously it is going to be up and down like this for a while. I know it has been that way for a lot of you. Part of my freak out was lack of preparation for the fact that he might not survive. I was so focused on getting him cured, I didn't really contemplate a negative outcome. But I think it is something that he and I have to address.

I appreciate you all taking the time to offer your advice and support. I'll keep you posted. I sometimes hesitate to post a lot because if I have good news and someone else has gotten bad news, I just feel incredible guilt. And if we have gotten bad news, I don't want to discourage anyone else going through this.

Thanks again.

[Scott]

I sometimes hesitate to post a lot because if I have good news and someone else has gotten bad news, I just feel incredible guilt. And if we have gotten bad news, I don't want to discourage anyone else going through this.

Just to reinforce what Robert said, please post at will. We're all here to help each other out, through all types of news.

[dadmo]

Good news gives hope.

[Karen]

Emily,
We'll do what we can to hold you up in bad times and rejoice in the good! Glad the numbers are going down and look forward to even lower on the next lab report!

[Hopeful]

HI Emily.

I'm sorry you had to go through that feeling when you found out that BHCG went up after the HDC. For me, when Kevin (hubby) and I found out the HDC was a failure, that was the hardest day of my life to just cope with that feeling. But we experienced the sadness and crushing blow of that news and we kept going to get Kevin cured.

I'm glad his #'s went down and you talked to Judy. Hang in there. YOu have a great support network and don't be afraid to email or post anything. We're here to help you.

Patti

PS Hi Erin.