Shawn, my heart is just breaking for you. I am so sorry that things have taken this turn, and in less than a year! How I hate this %&! cancer for what it has done to you.

I don't have an answer to your question about CTC of A, but the UC Davis Cancer Center is very highly regarded. The specialists you need may not be oncologists for this Ehlers Danlos syndrome, but they would know who to refer you to. In fact would it be possible to just go to the UC Davis emergency room? I agree that it seems crazy that Kaiser isn't offering you any options.

I am praying that you stay strong, no matter what comes --

(((HUGS)))

Lynn

Last edited by Mamacita; 03-14-2014 10:37 PM.
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T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides