Postby clj12288 » Sun Sep 23, 2018 9:06 pm
Jep,
I am sorry to hear about this discovery. I am hoping it's not abdominal lymph nodes. However, if they are, I want to give you some info because I have experience with it.
Mine have only been detected by PET scans - never big enough by CT criteria to be seen. So, I've had PETs every 2-3 months since July of 2015. Mine are considered retroperitoneal & para-aortic, and common illiac. If you do a search - it is somewhat rare. At least rare to have these lymph nodes and not other organs involved. We have blasted mine with 30 rounds of chemo, radiation, and surgery - and they continue to persist. Next steps are to try an EGFR inhibitor chemo. I have been fortunate to keep them relatively contained - although recently a node popped up in my supraclavicular (neck) region. But considering these first showed on a scan in July of 2015 - it's not lost on me I've been relatively lucky to only have these for the past 3 years.
I would suggest taking an aggressive treatment approach and making sure your doctor is in line with that approach. Don't let any doctor tell you that this means chemo for life...it may mean chemo for now until better options come along. Let me know if you have any questions.
Best of luck,
clj12288
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