Here's to that 5mm being NOTHING!!! Keep us posted!

So happy to hear!!!

I too am KRAS and MSS. Have had folfiri and folfox so future lines of chemo or treatments are unlikely. BUTT, here's to hoping I stay NED forever.

-Brenda

Heiders33- my story is that I was 4.6 at diagnoses with a 4 cm tumor and 8 positive nodes at the time. After surgery went down to .5 (yay) but with recurrence it jumped from 3.6 to 8 in a few weeks. CT was clear but nodes lit up in distant area on a PET and turned out 1 enlarged node turned into 5 p...

Thank you Donna and great news on being able to come off of adapt. I wish you NED forever!!! How did you get approval for it? Did you ask you oncologist or did they just put you on it? I'm taking 2000mg of xeloda a day but just not convinced it's doing enough to keep me NED.

Thanks!

-Brenda

Hi Punky, I am also sorry to hear what is going on. I am one of those Stage IV due to distant nodes that warriorspouse mentioned. In my case with the tumor in my cecum, my spread to para aortic nodes deemed me stage IV. I never had a PET scan before my initial surgery so it’s hard to know if it was ...

Good to hear that you are both doing well. StevieB, how did you get it approved? Where you part of a trial? Thanks!

-Brenda

Bumping this up. Wondering how those on Adapt are doing? How do you convince your oncologist to give this a try? I'm fearing that just xeloda is not enough to keep me long term NED. Thanks for chiming in!

Brenda

If you can, please see if you can get a second opinion. MSK reviewed my case( mine were shining bright with 12 suv on Pet scan so they knew there was more than one) and said they wouldn’t remove but then my original surgeon at Smilow in CT said he’d try and he got 8 out, 5 of which were cancerous. I...

Gringo, why did MSK say surgery is off the table? Location?

I had para-aortic nodes at diagnosis and as of my last PET scan in April they are no longer showing up (I'm overdue for a scan now). 5Fu infusions are starting to wear me down so I'm thinking of switching to Xeloda as I want to keep this going as long as possible. If they come back and it is in a l...

Brearmstrong, Dr. Bartlett did not use the word cure, but he said with surgery, " it could go away and never come back or it could come back again." So I guess that's the best we could hope for anyhow. My husband's oncologist said if his scans are clean after he completes chemo he would b...

cLD Sounds like a good plan is in place. My journey is similar and I was fortunate to find a surgeon who would remove the nodes. So far so good as it’s been 3 1/2 months and I am currently on xeloda pills for maintenance. The surgery can be tricky given the location so I am happy that they will go a...

This sounds wonderful. I'm currently stage IV NED (well just had a CT scan this morning so we shall see) and I'm G12D. I will give them a call. Thank you for letting us know!

Hi, try not to panic. I was stage 3C but had a quick recurrence after 12 rounds of folfox. My tumor was on the right side so when it came back to the para aortic lymph nodes I was then stage IV. It does mean that it is now through out his blood stream but don’t give up hope that it can be treated! I...