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Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Posted: Mon Sep 09, 2019 2:21 pm
by hopefulandstrong
Thank you all so much!

So much wisdom here.

For what it's worth, here is where I am today. Having scans on Wednesday -- I requested and I think my ONC understands that my hyper-vigilance is probably why I'm still alive and so doesn't want to fight it.

Having said that, I came to RADNYC's conclusion over the weekend: as long there are active tumors, there's going to CEA activity, and there could be a bunch of reasons for it bouncing around -- everything from lack of exercise to gum disease to stress to being off the anti-biotic I was taking for my rash, which also functions as an anti-inflammatory. It's not very likely that a treatment that worked so well for 10 weeks would suddenly stop working five weeks later, and I'm not expecting see anything dramatic on these scans. However, even if it has stopped working, and we do see, say, progression, it's not a catastrophe. It's just knowledge that informs the next steps.

What I'm learning through this journey is that it really is a long game -- hopefully a very long game. But even if it turns out to be shorter than I hope, it's really helpful to think of this in terms of steps. A friend who is also a survivor recently told me that he doc told him that it's like the train in Harry Potter: when you run out of one track, you get on another one.

I'll keep you posted -- but mostly wanted to share the mental thing, because that's a big reason we're all here, I think.

XX

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Posted: Tue Sep 10, 2019 10:01 am
by Claudine
Those are really good words, HopefulandStrong, I love your attitude!
DH's CEA levels appear to be steadily rising, albeit slowly - but I don't like that trend, of course. Still, they're still low and like RADNYC pointed out, when there are still tumors there's bound to be CEA activity. DH's next scan is on Monday so hopefully we'll know a bit more. His onc isn't too concerned about the slow rise and wants him to continue Folfiri/Avastin for another 6 rounds...

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make? - Update

Posted: Thu Sep 12, 2019 5:17 pm
by hopefulandstrong
So --

Good news, we found out fast. Bad news. There has been progression. Larger lesions in the liver and one hot lymph node just outside the liver.

Not what I was hoping for. My local doc thinks it makes sense to do another biopsy. It's really, really, rare for this stuff to stop working so fast. He says he's seen mutations mutate into something else. Has anyone here had that happen?

Thanks.

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make? - Update

Posted: Thu Sep 12, 2019 5:29 pm
by NHMike
hopefulandstrong wrote:So --

Good news, we found out fast. Bad news. There has been progression. Larger lesions in the liver and one hot lymph node just outside the liver.

Not what I was hoping for. My local doc thinks it makes sense to do another biopsy. It's really, really, rare for this stuff to stop working so fast. He says he's seen mutations mutate into something else. Has anyone here had that happen?

Thanks.


One of my coworkers was diagnosed with Non-Small Cell Lung Cancer a few months before I was diagnosed. They did a biopsy and had a targeted treatment for it so he went on that and the tumor shrunk by 50% but stayed at the same size. The tumor was inoperable. A year later, the tumor started growing and they did a biopsy and it had mutated. They expected the mutation, though, and they had another drug for that mutation. A year later and he had some concerning symptoms and they found spread to the spine with some loss of function in the lower body. I believe that this is another mutation. He is undergoing radiation therapy right now. I'm not sure if he's also doing chemo.

I have read some papers where there are secondary mutations. Most people with CRC probably don't know if there's another mutations as most don't get tested for the exact mutation so they don't know if it's changed.

I do not recall anyone on this board getting additional mutations though I do recall a few people with multiple mutations.

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Posted: Thu Sep 12, 2019 5:34 pm
by AmyG
1. Holy shit, that sucks.
2. I'm so glad you pushed for a scan and caught it.
3. Really hoping they find a way to kick this in the ass.

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Posted: Sun Sep 15, 2019 8:53 am
by hopefulandstrong
OK -

So I'm both frustrated and hopeful. Turns out the the PIK3 mutation, which I have in addition to BRAF, can make the Erbutix not work. Newsflash -- Targeted therapy needs to actually target what actually going onwith you! This is the second time I've had to figure this out. WTF!!!

Good news, there is some work being done on a treatment for PIK3. The bad news is obvious. Anybody out there have an experience with this?

Re: CEA jump from 2.8 to 33 in 6 weeks -- what to make?

Posted: Tue Sep 17, 2019 6:06 pm
by natelaugh
Hi,

My dad recently got a cea test. It increase from 7.1 to 12.1. The only thing that we differently was did a x-ray on his back and change his leucovorin with sugar to salt. We switch back to what work. Current doing leucovorin with d5 or sugar.

I think his x-ray had cause his cea to go up too. Do anyone know if x-ray or ct scan or using leucovorin with salt cause cea to increase? I