Thank you Eternal Optimist! Yes, my recurrence showed up just 30 days after finishing 12 rounds of folfox making me stage IVB. I'm now on folfori w/ avastin. I am angered that you have to pay for avastin yourself. That is discouraging for sure. I'm so sorry to hear about your recurrence. My surgeon ...

Awesome that the bad node was removed. Sounds like your oncologist wants to avoid recurrence and so I say go for it with the maintenance as hard as it sounds.

Hi Jep, was the distant lymph removed during surgery or show up on PET and disappeared during chemo? I know because I have distant lymph (now recurrence) that my oncologist said that cure is now off the table and back on folfiri w- avastin until it stops working. I wish your husband permanent NED.

Bumping this back up because I too have PALN recurrence and I'm wondering how Eternal optimist, Emzee and Alessandria are doing with their PALN's? Thanks for any updates and hoping you are all doing well!

-Brenda

Thank you everyone who responded! I did find out more information that there are 2 nodes with the larger one at 1.3cm. At the tumor board, more genetic testing was ordered to see if I have Braf mutation or others that might benefit from immunotheraphy. MSK got back to me and wants to see what my sca...

Anon,

Thank you for the follow up! I am also being treated at YNHH with input from Sloan Kettering. Your story is so inspirational and please keep checking in and letting us know how you are doing. I'm coming to terms with my stage IV diagnosis and hoping beyond hope to be here in five years.

I had a PET scan last week and you can see the history below. Sloane Kettering is reviewing my case as I am starting process to seek second opinions. I meet with my oncologist this week but initial call from him sounds like folfri with avastin for life and now says I am inoperable and incurable. I a...

Thank you Lee and BS. Your words do provide comfort to me in a scary time. I made some noise today and moved my MSKCC appointment from Dec 12th to TOMORROW! My PET scan isn't until Wednesday of this week back at Yale cancer center but the Sloan team said let's meet and review what we do know and com...

Well pain has continued and my CEA is rising. So devastated that it seems folfox failed and I will be going to Sloane Kettering on Dec. 12th for a second opinion. Waiting to get a PET scan next week but appendix cancer mets can be very hard to pick up on scans. Ultrasound and CT scan shows nothing b...

Hi Emm, I had a similar experience and a week after lap appendectomy, I was diagnosed with appendix cancer. I had a second surgery and 12 sessions of folfox chemo. That failed as I am dealing with a recurrence just 8 weeks after ending chemo.... so things to ask: If mass is cancer, what type of appe...

NBrandt, Your message gave me lots of hope. I'm so happy for you to have passed the 5 year mark. I know too that my survival chances are lower for people in the same situation but with primary in the colon rather than the appendix. I try not to think about it and search for success LONG term surviva...

Thanks Lee and BS. My CT scan went well. My spleen is still enlarged and the two lung nodules are stable. Oncologist thinks the pain is just from the Folfox taking it's toll and the surgery but I didn't have any pain the first 1/2 of the folox treatments. We are just on watch and wait for any perito...

Veckon, My 19 year old son has ulcerative colitis and so the last two years we were working on foods that helped when he had a flare. If you google, "diets for Chron's or UC" you will get great information and recipes. Kefir is awesome because it's full of probiotics and also soothing to y...

I realize that i just kinda barged in on this forum several months ago without introducing myself. How rude :shock: BUTT, I read everyone's responses several times a day as I go blindly through this fight; you all make it so much easier and education is the key! So I know AJQ posted similar question...

Great news!! Susie, I too have my post chemo first scan on Monday!! Good luck to both of us!!