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by Brearmstrong
Wed Feb 14, 2018 8:07 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: What's an acceptable delay for lymph node resection?
Replies: 10
Views: 390

Re: What's an acceptable delay for lymph node resection?

I have 2-3 para aortic lymph nodes that lit up on PET (12 uptake) and my CEA rose from 3.6 to 8.1 in just 30 days after ending Folfox. I am doing 6 months of folfori w/ avastin. IF the nodes don't grow or IF the cancer doesn't spread, my surgeon said he can remove them. I think he's worried about ag...
by Brearmstrong
Tue Feb 06, 2018 7:37 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Para-aortic node recurrence
Replies: 15
Views: 1655

Re: Para-aortic node recurrence

Thank you rp1954, I agree, just take them out if possible. My oncologist originally said inoperable until two days later at the tumor board, my original surgeon said that he would do it if no spread in 6 months on folfori. I realize that it means that cells are all through out my lymphatic system at...
by Brearmstrong
Mon Feb 05, 2018 3:46 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Para-aortic node recurrence
Replies: 15
Views: 1655

Re: Para-aortic node recurrence

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 ...
by Brearmstrong
Sun Dec 24, 2017 12:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update on my man...maintenance for 1-2 yrs (?)
Replies: 3
Views: 476

Re: Update on my man...maintenance for 1-2 yrs (?)

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.
by Brearmstrong
Sun Dec 24, 2017 10:14 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Update on my man...maintenance for 1-2 yrs (?)
Replies: 3
Views: 476

Re: Update on my man...maintenance for 1-2 yrs (?)

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.
by Brearmstrong
Thu Dec 21, 2017 8:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Para-aortic node recurrence
Replies: 15
Views: 1655

Re: Para-aortic node recurrence

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
by Brearmstrong
Mon Dec 18, 2017 10:35 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling hopeless. Para aortic nodes-inoperable?
Replies: 16
Views: 1041

Re: Feeling hopeless. Para aortic nodes-inoperable?

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...
by Brearmstrong
Mon Dec 18, 2017 10:18 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Stage IV Suvivor Celebrates Third Anniversary of Surgery
Replies: 17
Views: 2395

Re: Stage IV Suvivor Celebrates Third Anniversary of Surgery

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.
by Brearmstrong
Sun Dec 03, 2017 12:31 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Feeling hopeless. Para aortic nodes-inoperable?
Replies: 16
Views: 1041

Feeling hopeless. Para aortic nodes-inoperable?

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...
by Brearmstrong
Mon Nov 27, 2017 3:55 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on pains few weeks after end of Folfox
Replies: 9
Views: 822

Re: Question on pains few weeks after end of Folfox

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...
by Brearmstrong
Sun Nov 26, 2017 9:22 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on pains few weeks after end of Folfox
Replies: 9
Views: 822

Re: Question on pains few weeks after end of Folfox

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...
by Brearmstrong
Sun Nov 26, 2017 9:09 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Awaiting Pathology
Replies: 9
Views: 641

Re: Awaiting Pathology

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...
by Brearmstrong
Tue Oct 24, 2017 1:59 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on pains few weeks after end of Folfox
Replies: 9
Views: 822

Re: Question on pains few weeks after end of Folfox

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...
by Brearmstrong
Mon Oct 23, 2017 6:53 am
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Question on pains few weeks after end of Folfox
Replies: 9
Views: 822

Re: Question on pains few weeks after end of Folfox

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...
by Brearmstrong
Wed Oct 18, 2017 1:54 pm
Forum: Colon Talk - Colon cancer (colorectal cancer) support forum
Topic: Keytruda induced pancolitis (help me please!)
Replies: 13
Views: 1538

Re: Keytruda induced pancolitis (help me please!)

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...

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