HER2 Support Group Forums - View Single Post - ASCO abstract: most important to STAY on herceptin once have brain mets!!!

Andrea Barnett Budin · 06-12-2007, 01:32 PM

Adriana, I agree that your jolly old soul of an onc is beyond cynical on his prediction we'll all get brain mets if we live long enough. I will not accept that. Not just out of fear, and as a matter of self-protection, but I don't think they know enough to say such a thing.

Patty Z.'s post re estro/testoster and melatonin 10 is most interesting. I read on this board somewhere that testoster (maybe within a site click) may be a factor for longevity in bc. I went to an endocrinol becz of my incessant hot flashes, endured for 22 yrs, as my mother, who never had bc, but multiple mini strokes and Alzheimer-like condition, w/paralysis. My dghtr suggested endocrin when I said I can't live like this anymore. She paused in front of me, lked at the ground and then asked, Wait. What do you mean by that? I said not ready to jump out a window but edging closer from across the room. Thoughtful alw, Ali said Why don't you see an endocrinol. Not one OB/GYN, oncol ever sugg such a thing. I went, in total desperation. She is fabulous.

Dr. Mata said hot flashes can come w/high bld sgr. I am not diab but have very elevated bld sgr and am now on meds to regulate that. Also -- she found that I had slightly elevated testosterone. That amazed me as I feel like such a girly girl alw, but I am fiesty and proactive and damned determined. So my antenae went up when reading about testost and bc longevity and again when reading Patty Z's post. A link? HORMONES AGAIN.

Now reading about ESTRIOL and Progesterone sublingually for hot flashes somewhere in here the other day my ears alert to MORE on this. Then some one posted re CLONIDINE and hot flashes and I am awonder on that. My head is spinning. Can anyone make sense of all this.

Steph, as alw yr overview is so keen. MELATONIN thread maybe, or Melatonin, Testosterone thread. Plus an Estriol/hot flash/clonidine thread. I made 1 thread, w/much help. And we all know what attention that drew. Threads are key to helping those of us who wander around in here for info.

Any thoughts re any of the above would be greatly appreciated by those of us who can't make sense of it all. Sending happy, healthy energy to our my beloved Soul Sisters... ANDI

06-12-2007, 01:32 PM	#11
Andrea Barnett Budin Senior Member Join Date: Oct 2005 Location: LAND OF YES! w/home in Boca Raton, Florida Orig from L.I., N.Y. Ever hovering IN THE NOW... Posts: 1,904	Brain Mets Mystery Adriana, I agree that your jolly old soul of an onc is beyond cynical on his prediction we'll all get brain mets if we live long enough. I will not accept that. Not just out of fear, and as a matter of self-protection, but I don't think they know enough to say such a thing. Patty Z.'s post re estro/testoster and melatonin 10 is most interesting. I read on this board somewhere that testoster (maybe within a site click) may be a factor for longevity in bc. I went to an endocrinol becz of my incessant hot flashes, endured for 22 yrs, as my mother, who never had bc, but multiple mini strokes and Alzheimer-like condition, w/paralysis. My dghtr suggested endocrin when I said I can't live like this anymore. She paused in front of me, lked at the ground and then asked, Wait. What do you mean by that? I said not ready to jump out a window but edging closer from across the room. Thoughtful alw, Ali said Why don't you see an endocrinol. Not one OB/GYN, oncol ever sugg such a thing. I went, in total desperation. She is fabulous. Dr. Mata said hot flashes can come w/high bld sgr. I am not diab but have very elevated bld sgr and am now on meds to regulate that. Also -- she found that I had slightly elevated testosterone. That amazed me as I feel like such a girly girl alw, but I am fiesty and proactive and damned determined. So my antenae went up when reading about testost and bc longevity and again when reading Patty Z's post. A link? HORMONES AGAIN. Now reading about ESTRIOL and Progesterone sublingually for hot flashes somewhere in here the other day my ears alert to MORE on this. Then some one posted re CLONIDINE and hot flashes and I am awonder on that. My head is spinning. Can anyone make sense of all this. Steph, as alw yr overview is so keen. MELATONIN thread maybe, or Melatonin, Testosterone thread. Plus an Estriol/hot flash/clonidine thread. I made 1 thread, w/much help. And we all know what attention that drew. Threads are key to helping those of us who wander around in here for info. Any thoughts re any of the above would be greatly appreciated by those of us who can't make sense of it all. Sending happy, healthy energy to our my beloved Soul Sisters... ANDI __________________ Andi BB '95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive... '98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!) + good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either... Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...