HER2 Support Group Forums - View Single Post - Please post your two cents on Herceptin "side effects" real or perceived!

Andrea Barnett Budin · 10-14-2007, 09:49 AM

Hi, Kathy! As you can read I'm a 9 yr Herceptin honey. My plan is to stay on it forever, or until they come up w/the cure. I am on maintenance. Fatigue, yes. Dryness (which began w/Taxotere in '98) is rampant. Severely dry eyes. Dry nose. Dry skin (I'm Shisidio's best customer for moisutizers and cleansers). It seems gentle exfoliation gets rid of the dull dead cells. My cuticles are dry. My nails are thin, like when I was a little girl, and they peel. My hair is dry. I *used to be* in my former life, before bc -- oily. Skin and hair. Hair is thinner, thank you Taxotere. Oh, and thank you Taxotere for putting me into remission. Guess my multiple tumors got all dried up too.

I get my Vit H (thank you Dr. Dennis Slamon, Dr. Mark Pegram and Genentech's team) in a 1/2 hr infusion. Began at 2 hrs. Moved to 1 1/2 hrs, then to 1 hr, finally am good at 1/2 hr. BUT I have it mixed w/500 ccs saline vs standard protocol of 250. I find I feel less shaky and spacey that way.

All these many yrs after Taxotere I still have residual and rare pains (like deep in muscles of legs) and am a bit cloudy-headed. Maybe that's just the new me. Does chemo totally alter your DNA???

One weird anecdote I'd like to put out there and hope for responses from the panel. You ladies rock! I am a perfume addict. I generally wear Angel. I walk in the street and strangers say, Is that Angel? I love that smell. It's so clean! Waiters ask, Who is it that smells so good? Friends kiss me hello and say, You smell so good. You always smell so good. WELL -- NO MORE! At first I thought the Flea Market sold me a watered down version. I've tried a batch of perfumes. As of October '06 -- my skin no longer retains the scent of any perfume! And I really miss that. And all the nice comments I received DAILY. Every day. DOES ANYONE ELSE HAVE THIS *SIDE EFFECT*??????? What's that all about anyway???

Be well! Feel well.

With hugs,
Andi

10-14-2007, 09:49 AM	#308
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	Here's My Plan... Hi, Kathy! As you can read I'm a 9 yr Herceptin honey. My plan is to stay on it forever, or until they come up w/the cure. I am on maintenance. Fatigue, yes. Dryness (which began w/Taxotere in '98) is rampant. Severely dry eyes. Dry nose. Dry skin (I'm Shisidio's best customer for moisutizers and cleansers). It seems gentle exfoliation gets rid of the dull dead cells. My cuticles are dry. My nails are thin, like when I was a little girl, and they peel. My hair is dry. I used to be in my former life, before bc -- oily. Skin and hair. Hair is thinner, thank you Taxotere. Oh, and thank you Taxotere for putting me into remission. Guess my multiple tumors got all dried up too. I get my Vit H (thank you Dr. Dennis Slamon, Dr. Mark Pegram and Genentech's team) in a 1/2 hr infusion. Began at 2 hrs. Moved to 1 1/2 hrs, then to 1 hr, finally am good at 1/2 hr. BUT I have it mixed w/500 ccs saline vs standard protocol of 250. I find I feel less shaky and spacey that way. All these many yrs after Taxotere I still have residual and rare pains (like deep in muscles of legs) and am a bit cloudy-headed. Maybe that's just the new me. Does chemo totally alter your DNA??? One weird anecdote I'd like to put out there and hope for responses from the panel. You ladies rock! I am a perfume addict. I generally wear Angel. I walk in the street and strangers say, Is that Angel? I love that smell. It's so clean! Waiters ask, Who is it that smells so good? Friends kiss me hello and say, You smell so good. You always smell so good. WELL -- NO MORE! At first I thought the Flea Market sold me a watered down version. I've tried a batch of perfumes. As of October '06 -- my skin no longer retains the scent of any perfume! And I really miss that. And all the nice comments I received DAILY. Every day. DOES ANYONE ELSE HAVE THIS SIDE EFFECT??????? What's that all about anyway??? Be well! Feel well. With hugs, 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...