I just wanted to say I feel for you! I know how scary it is when the CEA is just rising and things are looking scary. But you still have so many options, so that's a big positive. You are a great wife and I am sure he appreciates everything you do. I'm not trying to give you advice as I don't know a...

Hey Alex, Sorry to hear about the latest mood there. If it’s any consolation, that’s almost exactly the attitude I experienced too as a stage IV patient in a European public health system. I know it’s hard not to let it get you down, but just hang onto the fact that he’s currently fit and well, and...

We FINALLY got an answer from MSK! Jesper is approved for an on-site appointment. Now we just need to figure out how to fit it in time-wise. I feel like he's been off chemo long enough! I'd rather give him a bit of FOLFIRI and then do the second opinion during a chemo break. Yay! I bet you're glad ...

Hi Alexandra, I know the scan results weren't exactly what you were looking for but a stable scan is a good scan. I started off with FOLFOX and had disease progression so was switched to FOLFIRI. I am having more issues now with side effects so my conversations with my oncologist revolve around man...

Thanks for the feedback so far. DH is eager(as one can be in this situation) to get started. Side effects aside he's in to beat it! That's great! You can do it! I agree with Rob about the fluids. Jesper drank about 4 liters a day while on FOLFIRI, he was drinking all the time. Jesper never had trou...

For my boyfriend, FOLFIRI was rougher. But of course it's different from person to person. On FOLFIRI he had bad nausea and severe malaise. On FOLFOX he felt bad too, but never quite as intensely as he did on FOLFIRI. However, he got sick with the flu and various fevers while on FOLFOX, and that nev...

And yes my husband was one for whom oxaliplatin didn’t work (as xelox not folfox) but who responded very well to Folfiri. He’s on chemo break now to recover from surgery but his onc will get him back on Folfiri if his CEA value is high when he gets checked mid March so I’d think it could be started...

I'm so upset and confused. We went to see Jesper's oncologist yesterday, and he was ALL doom and gloom. He says he doesn't think FOLFIRI will work this time, since Jesper's CEA kept rising while he was on FOLFOX. He says we are probably looking at chemo resistance and his hopes for any treatment wor...

Hi everyone, I really hope some of you have some input for me and my boyfriend. We are in Germany now to see Dr. Vogl, who is an interventional radiologist. We were hoping he could ablate some of Jesper's tumors, but he says he doesn't dare to at this point. Since Jesper has 800-1000 small mets in h...

brokenwings wrote:
I'm not sure they will be able to zap them all at once... I read somewhere that they can do 6 or 7 max in one intervention...

Yeah you're probably right. Well we'll start with the biggest ones in that case and then see what the next step is.

brokenwings wrote:Hi.

I think the only treatment for the liver that excludes other options is Y90. However, you should wait for an expert to chime in.
How many liver mets does he have?

Hugs.

Thanks for your reply! He has between 10 and 20 liver mets. The biggest ones are about 2.5 cm.

I was wondering - do any of you know if ablation precludes any other kind of treatment? As I mentioned, we are driving down to meet with Dr. Vogl but we were just planning on getting his opinion and seeing what he recommends. Now I'm thinking that if he wants to ablate Jesper's liver mets before the...

If I had worked with one of the first three oncologists I met with, I might be halfway to dead by now. Three of them! And all from major cancer centers! Finding a doctor who can treat Jesper with curative intent might be a challenge but they ARE out there. You’ve done a great job researching and pl...

I just wanted to second Julie (BTW Juliej you rock) “Stay strong. Be persistent and keep asking questions” We have been continually shocked by the differences between doctors.... we also are searching for the ones that think outside the box! Wow, it gives me hope to hear you say that! I'll definite...

I think there's some truth to this. All those lung mets are probably pumping up his CEA, especially since the liver mets are shrinking. I also agree that it's a very positive sign that chemo has arrested tumor growth in the liver and even reduced it quite a bit. Those lungs mets are problematic tho...