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

Andrea Barnett Budin · 05-01-2007, 01:32 PM

Boy, can I relate to deep muscle pain! Arms and legs. Like you've been beaten with a bat and left in the street. I even had it years after finishing Taxotere. I read that some of you wonderful ladies had only slightly running noses and drippy eyes and splitting nails. Some have known the incredible fatigue I had, and still do to a degree. When I mentioned to my onc that I KNOW IT SOUNDS WEIRD BUT I STILL FEEL THAT DEEP MUSCLE PAIN IN MY ARMS AND LEGS AND I KNOW IT'S BEEN YEARS SINCE I HAD CHEMO, he said, Not at all. A number of his patients make the same comments. I decided OKAY! Maybe that means the Taxotere is still beating the hell out of any lingering cancer cells.

You've got to put a positive spin on it. I would do the "freight train" drug again, since it stomped out every one of my multiple liver tumors in '98/'99 and I am still NED. Of course I didn't know the aggressive chemo was so named because you feel like you were hit by a freight train when you take it. I just thought I have a highly aggressive cancer (4th stage, 9 cm in the breast to begin with, in '95) and HER2+ into the liver and moving fast (according to CT scans and such) so -- hit it with the strongest tool they have in their arsenal.

I would hold on to the bed and move carefully to the wall, then to the next area to grab a hold of. I would put one hand on the shower wall, just to psychologically keep myself from collapsing to the floor. I'd only shower when my husband was home. I crawled up the stairs. I sat when talking to people, feeling my legs giving way. I held on to posts or pillars while waiting, or my husband's arms if available. But I got some makeup on, blush and lipstick and some eye shadow, my wig, my earrings and rings and a nice, neat, comfortable outfit and flats. I looked great. Or so I was told. You can't be sick. You look too good. That made me feel "normal". I had a smile on my face, because I KNEW I was going to survive, despite the odds. The joy and harmony of that knowing was apparently visible to all I encountered (when I managed to venture out of my bed, or out of my house). I met friends for dinner with Paul, to get him out with people. We'd talk and laugh and hug and give each other I love yous. That was all very healing! Laughter, love, hugs, people you truly care about -- that's so therapeutic!

Focus on healing and see yourself far into the future. Be good to yourself. You deserve that. Love yourself, and live with your heart full of kindness, generosity and gratitude for your many blessings. That's my best advice.
I was fifty when first dx and now have lived to greet and know 5 grandchildren! When I turned 60 Paul and I went to Hawaii. I had it in my head for a year that I would go parasailing. ME! Terrified of heights, bridges, driving into the city, spiders and palmettos bugs. I wanted to get as close to God as I could to shout THANK YOU! Thank you for my life. For my husband, two daughters and grandchildren (I had 3 at that time)! And I wanted to say loud and clear my personal mantra that I kept repeating (mostly as a goal) -- I AM STRONG, BRAVE AND DETERMINED!!! The guy in the boat that pulled me (and Paul) along, in tandem, took a picture of us. I keep it in my "brag" book that I carry with me of my children and my children's children. I was full of bliss and serenity.

So, I don't know when you count from, initial dx in '95 or mets in '98 -- I AM A SURVIVOR, a walking miracle -- and SO CAN YOU BE. BELIEVE.

Much love,
ANDI

05-01-2007, 01:32 PM	#188
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	Muscle Pain Boy, can I relate to deep muscle pain! Arms and legs. Like you've been beaten with a bat and left in the street. I even had it years after finishing Taxotere. I read that some of you wonderful ladies had only slightly running noses and drippy eyes and splitting nails. Some have known the incredible fatigue I had, and still do to a degree. When I mentioned to my onc that I KNOW IT SOUNDS WEIRD BUT I STILL FEEL THAT DEEP MUSCLE PAIN IN MY ARMS AND LEGS AND I KNOW IT'S BEEN YEARS SINCE I HAD CHEMO, he said, Not at all. A number of his patients make the same comments. I decided OKAY! Maybe that means the Taxotere is still beating the hell out of any lingering cancer cells. You've got to put a positive spin on it. I would do the "freight train" drug again, since it stomped out every one of my multiple liver tumors in '98/'99 and I am still NED. Of course I didn't know the aggressive chemo was so named because you feel like you were hit by a freight train when you take it. I just thought I have a highly aggressive cancer (4th stage, 9 cm in the breast to begin with, in '95) and HER2+ into the liver and moving fast (according to CT scans and such) so -- hit it with the strongest tool they have in their arsenal. I would hold on to the bed and move carefully to the wall, then to the next area to grab a hold of. I would put one hand on the shower wall, just to psychologically keep myself from collapsing to the floor. I'd only shower when my husband was home. I crawled up the stairs. I sat when talking to people, feeling my legs giving way. I held on to posts or pillars while waiting, or my husband's arms if available. But I got some makeup on, blush and lipstick and some eye shadow, my wig, my earrings and rings and a nice, neat, comfortable outfit and flats. I looked great. Or so I was told. You can't be sick. You look too good. That made me feel "normal". I had a smile on my face, because I KNEW I was going to survive, despite the odds. The joy and harmony of that knowing was apparently visible to all I encountered (when I managed to venture out of my bed, or out of my house). I met friends for dinner with Paul, to get him out with people. We'd talk and laugh and hug and give each other I love yous. That was all very healing! Laughter, love, hugs, people you truly care about -- that's so therapeutic! Focus on healing and see yourself far into the future. Be good to yourself. You deserve that. Love yourself, and live with your heart full of kindness, generosity and gratitude for your many blessings. That's my best advice. I was fifty when first dx and now have lived to greet and know 5 grandchildren! When I turned 60 Paul and I went to Hawaii. I had it in my head for a year that I would go parasailing. ME! Terrified of heights, bridges, driving into the city, spiders and palmettos bugs. I wanted to get as close to God as I could to shout THANK YOU! Thank you for my life. For my husband, two daughters and grandchildren (I had 3 at that time)! And I wanted to say loud and clear my personal mantra that I kept repeating (mostly as a goal) -- I AM STRONG, BRAVE AND DETERMINED!!! The guy in the boat that pulled me (and Paul) along, in tandem, took a picture of us. I keep it in my "brag" book that I carry with me of my children and my children's children. I was full of bliss and serenity. So, I don't know when you count from, initial dx in '95 or mets in '98 -- I AM A SURVIVOR, a walking miracle -- and SO CAN YOU BE. BELIEVE. Much love, ANDI