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tammymarie1971 · 07-27-2006, 12:23 PM

Her2 & ER+..I don't know about PR..can't seem to get any answers on that one.

I love how informative this site is...recently I went to a breast cancer support meeting..to discuss dragon boating..anyway I was surprised at how many of them did not know about their own her2 status or er status!!! I was so bothered by that fact...anyway I do believe knowledge is power!!!
I was dx'd in '01, at 30yrs old, they did not do her2 testing then as far as I know,
I can't help but think that maybe I would of been spared these recurrences if I could of gotten herceptin then, I also only know about estrogen status.
I only found out about the her2 status at my liver mets biopsy. Mar'04 - Tamoxifen did not stop this recurrence.

For that recurrence I only had taxol/herceptin 6 rounds. I did have a liver resection too, I have since wondered why only 6 rounds of herceptin...Should it not have been for at least a year??? Maybe I wouln't be dealing with bone mets now??
I realize that hindsight is 20/20 and these what if's aren't going to change anything now!

Also..I have been to Mexcio twice for treatment as well, and they put me on Femera even though I am still premenopausal, they thought this would put me into menopause, because my levels were close to menopausal levels? Anyway..I still continued with my periods although they were less regular..well this last time in Mexico they put me on arimidex so we will see. I was hesitant to go on these AI's does anyone know if they are dangerous for pre-menopause??
I have been just as skeptical about Mexican clinics as anyone else...but did you know that the first report about the biological characteristics of bisphosphonates was published in 1968!!!
Some Mexican clinics started using clodronate in the late '80's. The FDA did not approve pamidronate until '94. So for 7 years cancer patients went to Mexico to get bisphosphonates for bone mets, during this time the FDA was searching and seizing clodronate coming across, illegally into the US.
I found this very interesting as well as personally comforting that reputable Mexican clinics can actually have a headstart on some treatments that eventually will be approved here!
Tammy

07-27-2006, 12:23 PM	#35
tammymarie1971 Senior Member Join Date: Sep 2005 Location: British Columbia, Canada Posts: 198	Her2 & ER+..I don't know about PR..can't seem to get any answers on that one. I love how informative this site is...recently I went to a breast cancer support meeting..to discuss dragon boating..anyway I was surprised at how many of them did not know about their own her2 status or er status!!! I was so bothered by that fact...anyway I do believe knowledge is power!!! I was dx'd in '01, at 30yrs old, they did not do her2 testing then as far as I know, I can't help but think that maybe I would of been spared these recurrences if I could of gotten herceptin then, I also only know about estrogen status. I only found out about the her2 status at my liver mets biopsy. Mar'04 - Tamoxifen did not stop this recurrence. For that recurrence I only had taxol/herceptin 6 rounds. I did have a liver resection too, I have since wondered why only 6 rounds of herceptin...Should it not have been for at least a year??? Maybe I wouln't be dealing with bone mets now?? I realize that hindsight is 20/20 and these what if's aren't going to change anything now! Also..I have been to Mexcio twice for treatment as well, and they put me on Femera even though I am still premenopausal, they thought this would put me into menopause, because my levels were close to menopausal levels? Anyway..I still continued with my periods although they were less regular..well this last time in Mexico they put me on arimidex so we will see. I was hesitant to go on these AI's does anyone know if they are dangerous for pre-menopause?? I have been just as skeptical about Mexican clinics as anyone else...but did you know that the first report about the biological characteristics of bisphosphonates was published in 1968!!! Some Mexican clinics started using clodronate in the late '80's. The FDA did not approve pamidronate until '94. So for 7 years cancer patients went to Mexico to get bisphosphonates for bone mets, during this time the FDA was searching and seizing clodronate coming across, illegally into the US. I found this very interesting as well as personally comforting that reputable Mexican clinics can actually have a headstart on some treatments that eventually will be approved here! Tammy __________________ Dx'd Dec'01 while 6mos preg. with #4. child (30yrsold)Mastectomy/AC chemo/radiation/ Recur:Mar'04 liver mets: 3 taxol/herceptin /liver resection/3 taxol/herceptin. Cured? Recur: May'05 spine & Hip. New onc treatment in Mexico Feb'06-Mar-06 back to Mexico June/July '06 Currently on herceptin/Zometa/Femara-recently added navelbine Switched to arimidex Nov'06 ovaries removed June '07 ca15-3 in May'06 was 102 ca15-3 summer of '07 holding steady at 23! ca15-3 slowly rising Dec & Jan 36, 38, 41 and Feb was 36 Feb '08 Liver, lung & Brain scan NED... bones are stable with even a couple spots gone. as compared with '06 scans May '08 ca 15-3 is 55. Treatment is zometa, vinorelbine, herceptin and aromasin. No signifcant changes. Feb'09 Started Xeloda with herceptin..no more hormonals Feb'09-June'09 tumor markers coming down again from 155 to 84 May'09 blood clots in lungs vena cava filter put in..Heparin shots daily for now.