Postby clj12288 » Tue Oct 16, 2018 9:00 pm
Jep, I am so sorry. But, as AT mentioned please have hope as there are a good number of us here with positive distant lymph nodes that are doing ok and have been for several years.
You will see from my signature - I've tried a lot. Surgery - chemo - radiation - more chemo. You will have more information after the PET and that will help direct which way you can go. The problem with surgery - and believe me, I have wanted surgery every scan, and still do - but I know that surgery will get whatever we see on the scan - but it can't get those microscopic cells that aren't on the scan. So, that's where chemo comes in. I have heard from several experts, that the bigger concern in distant lymph node mets is not the actual lymph nodes we see, but rather those cells floating around that could spread to a vital organ. So, if it is a solitary node - and resectable - that is wonderful. But it will be ok if it's not because chemo is a good option. Folfiri + Avastin worked well for me for several years. I am not Folfiri + Vectibix. Has your husband had mutational testing? Is he KRAS wild? If so, I would ask about an EGFR inhibitor such as Vectibix or Erbitux. I am just starting that now, but I know they are using it in the first line setting as well for KRAS wild, especially left sided cancers. I would also ask for CA19-9 in additiona to CEA as there is some evidence that can be useful in lymph node mets. My CEA is not an indicator (always been below 2.5 after initial colon resection) but CA19-9 has been elevated.
Sending lots of hope you to you and yours!!!
clj, 30
dx '14, stage IIIc sigmoid cc
colectomy, 12 folfox
7/15, stage IV, met to liver, retroperitoneal/para aortic LNs
8/15 - 11/15: folfiri + liver resection
2/16: 14 5FU + avastin & 4 folfiri +avastin
12/16 -2/17 - PA LN removal (5/10 LNs +) & 25 tx radiation
12/17 - PET confirms metastasis to right common illiac node, uptake in PA LNs
14 folfiri + avastin
9/18: Pet progression, left supraclavicular node, biopsy + for mets
Begin folfiri + vectibix
CEA: not useful. 0.9 now
KRAS wild type, MSS