What is 'normal'?

[lozmac]

Ok. So hubby has had 4 x EP and currently on the 2nd of 4 x VeIP treatment. Before the first round of VeIP, his BHCG was 19. It's now sitting at 4!

My understanding is that the aim was to have a BHCG level of 0. The oncologist, (not our normal one) today told us that a reading of 4 is within the normal range and was looking good.

I know that, well hopefully, this round and the following two rounds of VeiP should bring that number down, but I'm worried that if his numbers don't get to 0, that the cancer will 'come back' as such.

Are we in for a lifetime of blood tests to check if it's come back if it doesn't get to zero? or should getting it down to 4 (or less) mean that that's it and he's cured?

Aghhhhh! so freaking confused! I know so far it's been a great result from one dose, but it's so hard to get excited about it. He's also not one to stick with a text book case much to his regular oncologist's frustration!

HELP!

[CW406]

Well, you're in for a lifetime of blood tests, period. We all are. No one is assumed to be cured - we're all on surveillance. This is for a number of reasons - late relapses occur, the odds of a second primary are higher in those who have had TC, etc.

Now, with respect to the bHCG levels, I would ask TC Destroyer. He once showed a plot of his bHCG levels versus time - I can't find it right now. I am not sure how his have been in the long-term steady state, but I have heard of others whose levels remain persistently on the higher end of normal, or even a little above.

Also keep in mind that "normal" can also be a function of the lab and the equipment being used. The first time they ran my levels, it was at the Mayo Clinic's lab and they claimed on that test that anything above 0.7 was abnormal. My oncologist who has a research background said he would honestly be surprised if they really could ascertain the value with such precision in a high-throughput setting. I've heard of "normal" being anywhere from less than 1 to less than 8 or so, depending on the test and the level of precision/accuracy that they wish to attribute to their methods.

[lozmac]

Thanks for the quick reply!

I think it's just fair to say that I'm totally over cancer at the moment! Too many curve balls in all this!
It's just you seem to get a grip on things, numbers, levels, reactions, etc, and then the game changes and you know f$#k all again!

[Fed]

Absent any live cancer, the decline of serum HCG levels follows an exponential decay curve. The rate of decrease slows down the lower the amount of HCG one has. Now, it is my understanding that the few who have had to deal with large amounts of choriocarcinoma almost never get to see "0", and their HCG usually hovers in the low single-digits (typically below 5). The only time you should be concerned is if the levels start going up again, but if they stay low and hover within the normal limits, I'd be optimistic.

[Kat]

Here's a nice, easy-to-read primer on HCG.

http://www.livestrong.com/article/24...evel-in-males/

5 is okay! Don't freak out! Echoing what Fed said, the thing to watch is a rise. Also keep in mind that each person is different---5 might be "normal" for your husband. And also keep in mind that our bodies have fluctuations in levels of all things, and it's possible to be 5 one day, and 4.2 the next, depending on the simplest things, like how hydrated you are.

This whole experience jacks with your brain a bit, doesn't it? I would just about drag my husband to the doctor if he looked pale or had circles under his eyes. Of course, the paleness and circles were usually related to video games, not cancer.

Best wishes,

[lozmac]

thanks for all the messages! Things are a bit rough this week after round 2 of the VeIP. John has a lot of pain in his stomach where the tumors are, but he seems to be a lot worse than the first dose. He's having a ct scan on friday, but then can't see the oncologist until the 22nd Aug when he's due to start round 3! We have been VERY lucky, that we are able to contact our Melbourne oncologist whenever we need, day or night. This is helping a lot.
I guess I just can't get over the fact that this is going to go on for quite a while yet, being constantly monitored, frequent blood tests etc. I'm more of a, 'find the problem, fix the problem and move on' sort of person. I have NO control at all, an i'm not liking it!