Anyone else feel HORRIBLE on Herceptin?

[atdec05]

I noticed after a couple of months of herceptin I started getting joint pain in my feet, knees, and lower back. I took Glucosamine and that seemed to help, but I had to take it for several weeks to experience any effect.

My last treatment was Jan. 31, and my pain is greatly diminished.

I only took benedryl the first treatment; after that I took 2 extra-strength Tylenol before each treatment.

= Anna

[panicked911]

Hi Kelly :
THERE IS HOPE!!

I finished my year of herceptain on Nov. 1 (triple dose) and by mid December i noticed a marked improvement - the achs and pains that had plagued me to the point of feeling like I was 8 in a 45 year old body eased. By january I could bend my fingers and legs w/o pain! a little stiffness but no esl pain - the brain fog has also started to subside. I am in arimidex and luro as well and the oncs kept telling me it wa those drugs ot the hercpetain. I always felt they were wrong b/c when i went to triple dose 1/2 way thru the symptoms got worse. When I went back to my O cologist in January she was amazed at the improvement - she is head of all breat cancer trials at a major NY cancer center and said she has not sen anything quite like it -
Moral of this story is that it can get better - hang in there and once off, there is a half life ....
I actully felt well enought his week to go skiing ! YEA

Susanne

[Catherine]

Kelly, so sorry you are feeling rotten. I have only had 3 rounds of Herceptin. Mine is every 3 weeks til the end of Dec 2007. So far just a few minor complaints. After reading those that posted to your comments, I may be getting the same crummie side effects in a few months. Thank goodness for this site.

I sure hope that some of the suggestions posted will help you. I have no advice, just wanted you to know I am still out here. So far so good for me, lucky.lucky. Have been away on vacation so have not posted for two weeks.

All the best, I hope you and your doctor can figure out a way to get you some relief. You deserve it.

Catherine

[astrid]

I had not been having a bad time until my December treatment. I have been on Herceptin since June of 2006. In December, I started to feel really bad about 2 hours after the treatment and then I had fevers up to 102 and then down all that night and really bad diarrhea and body aches all night and the next day. I take Hercptin every three weeks because I have an hours drive to the hospital, but my doctor switched my infusion to be delivered to an hour again instead of 30 minutes and I had not had a violent reaction. I had my infusion last Tuesday and I felt great afterwards but yesterday ( a week later) I went to the gym and went to a spinning class and had to quit I was so out of breath. I have been going to the gym for a year now, but have not been doing really heavy cardio for a while. Do you think its Herceptin or something worse or ???

I've generally done well on herceptin (if I discount the blurry vision, runny nose, cough, swollen ankles, and diarrhea, none of which bother me much physically although I do worry about the cough and swelling in feet with respect to heart. However, I just reached six months on herceptin, with my infusion on Tuesday. My husband remarked right before that my cough had improved a lot, and here it is back again, very strong. Also, I've had trouble breathing normally yesterday and today, and I'm completely without energy. I need to vacuum desperately and just can't seem to get the energy to do so. Has anyone else found that it gets worse as you go along?

[gin-tx]

Dear Kelly,

I am so sorry you are having such problems from Herceptin. I have been on H since June 2006, not so much pain as fatigue, lack of energy, etc. I just figured that was to be expected. Have had other problems from the Aredia I'm also being given in the port to strengthen the bones. And they have to be given separately. Does your onc give you something before treatment. I get a Benadryl and 2 tylenol to prevent chills, nausea. I do have some aches and pains but had that before I started treatment.

Keep me informed of your progress. How long have you been on treatment?

hugs,

ginkott1@aol.com

[panicked911]

HANG IN THERE IT DOES GET BETTER!!
I am living proof - a year ago i was miserable! Herceptain was wreaking havok with my body - i could not bend at the knes, my fingers were stiff as a baord and i ached all over and swore i was ADD.
a 45 year old trapped in an 80 year old body!

To get thru the last six moths of herceptain, I started intense stretching exercising like pilates , went to physical therapy and started taking glucosime and condtoitin. All of this did not "cure" the herceptain side effects but it certainly took the edge off.

I ended my 1 year of herceptain on Nov. 1 - it ws a triple dose - sitting in the chemo place weekly was worse than the side effects- so i opted for the triple dose- by mid december i noticed a real difference in how I was feeling. My strength started comig back - the jounts ached less - I could eve do a squat and hold hand weights!
I even skiied for the first time in 2 years last week and it felt good.
I still have some residual muscle aches and stiffness and my immune system has not bounced ack the ay i I jad hoped. i have hd my second cold, sore throat sinus infectio in three months. Bit clearly there is marked improvement. I attribute the remaiing aches pai stiffness to the lupron shots and the arimidex i am on. Small price to pay if it can hold a roccurance at bay!

Hope thishelps - but please hang in there - it does get better.

Susanne

[Tricia]

I hade my third chemo carboplatin/herceptin/taxotere today and this exact regimen put me in the hospital last week ago or so. So I was very nervous about taking it again. But I took everything they said to take,,,, you know decadron, benedryl, anazamet, zofran etc. The Doctor told me that he was so excited the results of the tumors... they couldnt be felt by me nor the Dr's so what he is going to go is have my surgery moved to the 3-4 week of april and then start the rest of the year of Herceptin and then use tomaxifan for 5 years.... on our first meeting he gave me 50% 50% chance and now he says an easy 80-90% so Me and my husband is very excicted PRAISE OUR LORD JESUS!!!!! GIVE HIM THE GLORY < THE POWER THE HONOUR...... WE DO HAVE AN AWESOME GOD!!!!


Thank you lord for helping to bring some understand and some hope that this is much more about me than the cancer that is inside me I think all my friend and family who have supported me through this.... mainly my wonderful husband who without I will crumble to the flower. Thank you to you ladies always willing to share their ideas, their pains, what they had learned... YOU ARE THE WOMAN WHO MAKE THESE BOARDS LOVE YA ALL AND GOD BLESS TO YOU ALL