Hi all,
Just got off the phone from the nurse who explained my histology results came back and I have a stage 1 mixed germ cell seminoma. The nurse went on to explain because my afp was at 13 the last time they did my bloods I would potentially need 4 rounds of chemo. They are doing more bloods tomorrow and if my afp has dropped then it may only be 1 round. 4 rounds is the thing that is sticking in my head though, it seems way out of proportion with what i've read from other people on here. Does this sound normal for an afp of 13, would love to know people's thoughts on this?
Best,
Ted
Hi Ted, really sorry to hear you're going through all of this! I always found the waiting around for results bit one of the worst, so I really do feel for you.
My husband had a similar conversation with his cancer team back in September. He was officially stage 1, but his AFP was still elevated after surgery. They wanted it to drop to normal (it has a half life of about 5-7 days) before they would commit to just 1 round of preventative chemotherapy, or make plans for 3 rounds instead. His AFP was MUCH higher than yours (2000) so it took weeks to find out where it would settle. As it happened, his AFP started to creep up again before it ever came to normal, so it was concluded that there was still cancer in the body—they just couldn't see it on the CT scan. Because of this, they went with 3 rounds (which he is just about to finish and has managed very well!).
I imagine they are doing something similar with you—making sure that they are 100% giving you the right dose of chemo. They won't want to under or overtreat it and just need to confirm that there is no active cancer left. I will admit 4 rounds does seem a little higher than the standard 3 I've heard talked about on here and that we were offered, but it may be to do with the particular makeup of your tumour? I would ask your team about why it's that particular number anyway, if the AFP doesn't end up coming down.
For now, I would say sit tight, see what happens tomorrow, and work it out from there. I imagine your cancer team will discuss all options with you regardless of what comes back (we were given 3 different options of how to receive the 3 rounds).
Let us know how you get on! Fingers crossed!!
Hi T K!
sorry you’re going through this, it sounds as though the nurse may have just been preparing you for the possibility rather than giving you a heads up, obviously it’ll be up to the consultants to make the decision about what’s necessary in your case.
I’d be open to the idea that if 4 rounds is what is needed then you’re mentally prepared and smash through it, if it’s anything less than that then take it as a win!
blood results are only part of what helps them make their decisions, but I must admit I am not that well versed in all of the technical information. From blood results etc I was happy to accept that they told me what I needed to know.
Did 4 rounds myself with a retro peritoneal tumour about the size of a cricket ball and about six months since last treatment I’m doing great.
fingers crossed you don’t need 4 rounds but if it is the case you’ll do fine, make the most of support and graze constantly
Hi Lavender.
Thanks for taking some time out of your Friday to reply, and i'm glad your husband is doing well. Interesting to learn about how they are looking for which way the cancer is trending, this is new to me but makes sense. I am however, a little in the dark as to what "half life" means? This isn't terminology I have heard before and may be useful to know going into my meeting next week.
I can see your husbands and most other people have a much higher AFP than mine (I think I caught it very early), which adds to my surprise of potentially going through 4 rounds of chemo! I am so close to being under 10AFP which i hear is the target range! My concern with doing 4 rounds is losing some sperm count as I am single and want to have children in the future. I do have sperm banked but would ideally like to go the natural route, do you have much knowledge on this?
Thanks for your advise,
TK
Hi Guitar man,
Thanks for the reply and i'm glad they managed to get that tumor out it sounds like a big one.
I am fully prepared for 4 rounds, ideally would like to do the one so I can start to feel normal again 6 months from now. How long after treatment did you regain yourself and also your hair?
Cheers,
TK
Hi TK, hope you're having a good Saturday, all things considered!
Sorry about the confusing terminology! Half life just means how long it takes the blood marker to decrease by half. With AFP, the half life is 5-7 days, so what should happen is that the AFP will drop by half every week or so, until it is in the normal bracket. That means your AFP should go from 13 to somewhere in the normal under-10 range this week, if the cancer has been cured by the surgery alone. If it doesn't, your doctors will want to nip anything residual with chemo.
With my husband, they took his bloods every week to confirm that the AFP was decreasing by half every time after he had the surgery. It went from 2000 pre-surgery to 1000 afterwards, the week after it was 500, then 250 the week after that, and on and on, until it started to slow down and eventually start to creep up again. It was a pretty long road (Aug to end of October) and it decreased all the way to 17 before starting to rise again (though it hadn't been halving perfectly prior to that either). So, even though your AFP is really close to being normal—and I agree it sounds like you found it nice and early—your doctors will want to get you into that nice safe normal bracket just to confirm it doesn't start to creep up again.
Again, 4 rounds seems a little more than what I've heard is normal on this forum, and from what we were personally offered, but as Guitarman has mentioned, this could just be the nurse letting you know the full spectrum of possibilities. Got my fingers crossed it's just one-and-done for you!!
We sperm banked too, and were told that the vast majority of men go on to have kids after chemo. We don't have kids either, so would love to go the natural route as well, and as far as we've been told by health professionals, this should be entirely possible! Unfortunately, I don't have much certainty on the subject as I'm still going through it myself, but I do have a family friend who had 4 rounds of BEP chemo back in the 90s, and he had 2 perfectly healthy children after treatment :)
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