juliej wrote:Well, the increase in CEA definitely means something. But the stable scan is very interesting. He wouldn't be the first patient with an increase in CEA due to the significant death of tumor cells. I'm not saying that's what's happening. But it's worth considering, especially with the stable scan.
He doesn't have a KRAS mutation, right? What about Xeloda + Erbitux + Irinotecan biweekly? That's what Eric (BrownBagger) had and it kept him around for a long time.
On the other hand, it's really good to check with the clinical trials unit. There is some new and interesting stuff going on there.
Stay strong! Glad you are getting some second opinions!
xo,
Juliej
Rock_Robster wrote:Hey Alex, glad you guys are both feeling well. Sorry about the CEA - hopefully indeed just a flare. I can understand the nervousness around doing another 8 weeks on the same chemo though. I haven’t heard of changing chemo based in CEA alone and with stable scans, but I can also see the onc’s point.
If I recall correctly he didn’t have progression on FOLFIRI + Vectibix(?) and had a good response to that as first line; I wonder if there’s the option to go back to that?
Cheers
Rob
AlexandraZ wrote:Rock_Robster wrote:Hey Alex, glad you guys are both feeling well. Sorry about the CEA - hopefully indeed just a flare. I can understand the nervousness around doing another 8 weeks on the same chemo though. I haven’t heard of changing chemo based in CEA alone and with stable scans, but I can also see the onc’s point.
If I recall correctly he didn’t have progression on FOLFIRI + Vectibix(?) and had a good response to that as first line; I wonder if there’s the option to go back to that?
Cheers
Rob
Thanks Rob! Yeah it's a tricky point...he says we can go ahead if we want, but he wouldn't necessarily recommend it. Looks like we'll be taking a little break while Jesper gets a liver biopsy done for genomic sequencing in connection with clinical trials. And once I hear back from MSK we'll book flights. So we'll check out a bunch of options in a few weeks.
Three of our doctors have mentioned Lonsurf and said that they'd offer it, but it's not fully approved in Denmark yet. It's some kind of a political point - we run into these things with socialized medicine. They can apply for it but they could tell us with 99% certainty that it would be disapproved. It will be good to hear what MSK recommends. I mean, if we REALLY can't get it here, we might just pay for it. But apparently it's one of the more expensive drugs, as the patent is still valid. But we'll see what they recommend over there. You know a lot Rob - do you think ablation of the liver mets might be a good idea? We'll be driving down to Dr. Vogl in Germany who does regional chemo and ablations. I think that since Jesper's liver mets are under 2.5 cm it would be a good idea to do now, in case they start growing like they did last time we took a chemo break.
stu wrote:Hi ,
My mum’s oncologists have always only worked from the scan results and never from CEA in isolation . My mum’s CEA always rose after two cycles and stayed that way for the full six cycles each year . It did not drop until well after chemo stopped . I would be keeping a close eye on his CEA to see if it drops over the next few weeks . My mum had significant shrinkage which maybe was easier to read than stable but it would cause me concern that the stable result was hiding behind the CEA results .
Anyway you are doing the right thing and seeking out windows of opportunity . My mum has had her CEA checked every month for ten years . I would get them to keep a close eye on it off chemo .
All the best ,
Stu
Siti wrote:I don’t have experience to give you any valuable insights but I think you’re doing the right thing to get second opinions (well done on raising funds for Jesper!). From what I gathered in your past posts, you’re not too pleased with the pessimistic approach of your doctors so I think it’s really time to move to another cancer Center.
Claudine wrote:Seems like you are being really proactive and have a plan in place, that's great! I'll be very interested to hear what you learn about local chemo for lung mets. My husband's seem to be under control, but he too had many (tiny) and I'm nervous they'll start growing again someday.
AlexandraZ wrote: Dr. Vogl wrote me that Jesper's crazy high CEA is probably because of the lung mets (he said high CEA often comes from lung mets, but I don't know if that's a true datum - seems like something he has often observed as being the case). I guess 70,000 makes sense if you have so many mets.
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