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Val Pfeiffer · 05-31-2006, 06:17 PM

Maryann--
I hated to read your news. You are most certainly in my thoughts! Life works in unusual ways...allow me to tell you a story...I got on a shuttle today from the Atlanta airport and met a woman who is a physician who is hired by patients who need assistance advocating for their health care needs; as you can imagine, she deals with many cancer patients. We got into an involved conversation about Her2 cases and issues related to them. There is a huge oncology convention in Atlanta this week (I am here for a health care plan alliance meeting, not this oncology one) and she is here for that. She is what's called a "Clinical Advocate." I can't help but think that someone like her could help you or maybe other members of this board. She spends time doing medical research for people, then presents her findings to their current health care providers. For a fee; not sure how much. Judging from what I have learned from everyone on this board, most of us are doing a damn good job advocating on our own, but there is a big part of me that wants to be able to offer you some sort of advice. This is all I've got to give you other than my prayers. Keep the faith; we're all pulling for you :-)

XXOO
Val

05-31-2006, 06:17 PM	#89
Val Pfeiffer Senior Member Join Date: Feb 2005 Location: Wisconsin Posts: 159	Maryann-- I hated to read your news. You are most certainly in my thoughts! Life works in unusual ways...allow me to tell you a story...I got on a shuttle today from the Atlanta airport and met a woman who is a physician who is hired by patients who need assistance advocating for their health care needs; as you can imagine, she deals with many cancer patients. We got into an involved conversation about Her2 cases and issues related to them. There is a huge oncology convention in Atlanta this week (I am here for a health care plan alliance meeting, not this oncology one) and she is here for that. She is what's called a "Clinical Advocate." I can't help but think that someone like her could help you or maybe other members of this board. She spends time doing medical research for people, then presents her findings to their current health care providers. For a fee; not sure how much. Judging from what I have learned from everyone on this board, most of us are doing a damn good job advocating on our own, but there is a big part of me that wants to be able to offer you some sort of advice. This is all I've got to give you other than my prayers. Keep the faith; we're all pulling for you :-) XXOO Val __________________ BLOG: http://valleygirlvnp.blogspot.com/ Dx 11/04, Age 42, ER-/PR-, HER2+++ 3 months weekly Herceptin, Taxol. Carboplatin Significant tumor shrinkage Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes 3 more months weekly Herceptin, Taxol. Carboplatin 7/05 30 radiation treatments, IMRT planning approach Started 1 year of Herceptin 9/05 9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually. * * * * * * * * * * * * * * * * * * * * * * * * * * * 6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.