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

Andrea Barnett Budin · 03-15-2013, 03:40 PM

I found Taxotere side effects to be the worst. Even off Taxotere for years, I would occasionally get serious and deep muscle pain in arms and legs. My doc said I'm not the only patient reporting this yrs after.

Herceptin was tolerated fairly well. Low energy. B-12 sublingual. Phyto Formula for chronic fatigue recommended by nut onc (supplement guy).

Ayr gel in a tube for nose. I used to have to blow my nose for the first 1/2 hr I got up in the morning. And it was bloody.

Poopies/bathroom drama really bad. After all is said and done, I have created a FOOD TRIGGER list that I must stick by religiously. After 5 gastro guys and every med they could throw at me, 1 Wobenzyme 1/2 hr before meals plus LIQUID IMODIUM have proven to be fantastic. My chronic IBS since the first chemo is somewhat under control. (KY jelly for diaper rash works wonders when you've spent hrs on the toilette...)

I was on Herceptin for 10 yrs. Off for nearly 5!!!!!

So sorry to hear of those battling the side effects of whatever.

From the Taxotere I had severe neuropathy, fingers, soles of feet, toes. Burning pain. Dropping things. No headache. No dizziness. Well from the Roxicet yes.

My fav onc told me at the 5 yr mark on Herceptin, I could stop. I stayed on for another 5, cause I wasn't going to mess w/NED. It is very scary going off, but I celebrate each year, have the date of last infusion marked on my yearly calendar. It is my THIS IS MY NOW Day! Freedom. No more chemo rooms.

Still do the supplement thing twice daily (many many). Meditate. Talk to my body. HEALTHY AND WELL! It hears everything you think, say and whisper. And it follows your instructions! Honestly. State your Intent and your Expectation explicitly.

KNOW that the Universe is also listening to your thoughts and intentions. And it responds -- in kind. So I stay far from fear and worry, uncertainty and all negativity.

I focus on The Now. Not yesterday. Though it was all life-altering. I look to tomorrow with as much love as I can muster. I allow myself to be a vessel for Universal Love. Compassion. Kindness. Generosity of Spirit. Forgiveness. And GRATITUDE. Every day, several times a day, I look up and I say, THANK YOU FOR MY LIFE.

I visualize myself far far into the future. I breathe. In. And hold. And out. Slowly. Releasing all that is toxic on the exhalation.

This is the very best advice I can offer. I pray you all find joy and serenity, wellness and health.

With Love and Light,

These are my best suggestions.

Andi

03-15-2013, 03:40 PM	#627
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	Just wanted to chime in. I hear you. I am thinking of you. I found Taxotere side effects to be the worst. Even off Taxotere for years, I would occasionally get serious and deep muscle pain in arms and legs. My doc said I'm not the only patient reporting this yrs after. Herceptin was tolerated fairly well. Low energy. B-12 sublingual. Phyto Formula for chronic fatigue recommended by nut onc (supplement guy). Ayr gel in a tube for nose. I used to have to blow my nose for the first 1/2 hr I got up in the morning. And it was bloody. Poopies/bathroom drama really bad. After all is said and done, I have created a FOOD TRIGGER list that I must stick by religiously. After 5 gastro guys and every med they could throw at me, 1 Wobenzyme 1/2 hr before meals plus LIQUID IMODIUM have proven to be fantastic. My chronic IBS since the first chemo is somewhat under control. (KY jelly for diaper rash works wonders when you've spent hrs on the toilette...) I was on Herceptin for 10 yrs. Off for nearly 5!!!!! So sorry to hear of those battling the side effects of whatever. From the Taxotere I had severe neuropathy, fingers, soles of feet, toes. Burning pain. Dropping things. No headache. No dizziness. Well from the Roxicet yes. My fav onc told me at the 5 yr mark on Herceptin, I could stop. I stayed on for another 5, cause I wasn't going to mess w/NED. It is very scary going off, but I celebrate each year, have the date of last infusion marked on my yearly calendar. It is my THIS IS MY NOW Day! Freedom. No more chemo rooms. Still do the supplement thing twice daily (many many). Meditate. Talk to my body. HEALTHY AND WELL! It hears everything you think, say and whisper. And it follows your instructions! Honestly. State your Intent and your Expectation explicitly. KNOW that the Universe is also listening to your thoughts and intentions. And it responds -- in kind. So I stay far from fear and worry, uncertainty and all negativity. I focus on The Now. Not yesterday. Though it was all life-altering. I look to tomorrow with as much love as I can muster. I allow myself to be a vessel for Universal Love. Compassion. Kindness. Generosity of Spirit. Forgiveness. And GRATITUDE. Every day, several times a day, I look up and I say, THANK YOU FOR MY LIFE. I visualize myself far far into the future. I breathe. In. And hold. And out. Slowly. Releasing all that is toxic on the exhalation. This is the very best advice I can offer. I pray you all find joy and serenity, wellness and health. With Love and Light, These are my best suggestions. 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...