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sassy · 12-21-2007, 09:26 PM

I realize that HER2's are a minority DX, however I have been surprised that this site is not listed when articles are written or other media outlets list websites to go for help and information on breast cancer. ACS is usually mentioned(I have not found it that helpful), Susan Komen, BreastCancer.org, and CancerCare are also often mentioned.

What can we do to help get the word out to HER2+'s about this site which is the best source of information available to the lay person (and often professionals, my former onc found info here). One problem is that even in this world of technology, there are those who have no access to the internet, or whose access is limited because of illness (public libraries, etc cannot be visited). Internet would appear to be the best avenue, especially considering the fast paced evolution of treatments, but how can we "spread the word" and how else can we share information and reach those who would benefit from the information?

I realize that your vision probably goes way beyond this Becky, but this aspect has troubled me for some time.

I'll help any way that I can.

12-21-2007, 09:26 PM	#11
sassy Senior Member Join Date: Sep 2005 Location: Mountains of Virginia Posts: 2,267	I realize that HER2's are a minority DX, however I have been surprised that this site is not listed when articles are written or other media outlets list websites to go for help and information on breast cancer. ACS is usually mentioned(I have not found it that helpful), Susan Komen, BreastCancer.org, and CancerCare are also often mentioned. What can we do to help get the word out to HER2+'s about this site which is the best source of information available to the lay person (and often professionals, my former onc found info here). One problem is that even in this world of technology, there are those who have no access to the internet, or whose access is limited because of illness (public libraries, etc cannot be visited). Internet would appear to be the best avenue, especially considering the fast paced evolution of treatments, but how can we "spread the word" and how else can we share information and reach those who would benefit from the information? I realize that your vision probably goes way beyond this Becky, but this aspect has troubled me for some time. I'll help any way that I can. __________________ Rhonda (Sassy) dx age 45 DX 2/15/05 Stage IIb (at surgery)restaged IIIa Left mast .9cm tumor 5 of 14 nodes Triple Positive 4 DD A/C 12 Taxol/Herceptin 33Rads Strange infect mast site one year aft surg, hosp 1 wk Herceptin for total of 18 months Lupron Monthly 4 yrs Neurontin for aches, pains and hot flashes(It works!) Ovaries removed 11/09 stop Lupron and Neurontin Arimidex 6 yrs (tried Femara, no SE improvement) Tried Exemestane-hips got so bad could hardly walk Back to Arimidex for year seven Zometa 2X Annual for 7years, Lasix Stop Arimidex 5/13 Stop Zometa 7/13-Bi-lateral Stress Fractures in Femurs from Zometa 5/14 Start Tamoxifen 3/15 Stem cell transplant to stimulate femur bone growth/healing 5/15 Complete fracture of right femur/Titanium rods both femurs 9/16 Start Evista stopTamoxifen 3/17 Stop Evista--unwelcome side effects! NED and no meds....... 14YEARS NED!