I hate my herceptin treatment

[shannigans]

Hello. I am fairly new to this board but not to the caner merrygo around. I was first diagn this past January atthe age of 27. In february, had a lumpectomy with auxuillary node dissesction, stage 3, er/pr- her 2nu3++. Had dd chemo march through June,ac then taxol, started herceptin in jUly, had a reaction to it right away, added more pre-meds then in august had to have a mastectomy, stopped herceptin, September started rads and herceptin, same thing reacted to it, pre-meds chanaged again, herceptin given over an hour and half, dealing with sleeping issues. I was getting 50 of liquid benadryl and 4 of dexadron, the benadryl would maek em sleepy for about an hour and then i would be up for then next 24 hours,, just wired. I have 2 kids, one is 17 months and the other is 7 adn my husbad is going to school so I need to be functional... None of the sleeping meds were working like they use to and the stronger stuff, like haddol sent me to the er becase I couldn't breathe, so then the herceptin treatments stopped so I coud finish rads civilly. My rad have been completed and I am due to start my weekly treatments back up in december and I am a little anxious. my reactions to this drug is that i start shaking, almost convulsing from head to toe, I get real hot then real cold, myblood pressure shoots through the rough and then at home i spike a fever...... I so hate this drug and what it does to me. I am wondring with all this starting and stoppong, is it really going to be that effective for me. I am just starting to feel like myself, and I love it, I cherrish it but am hesitant that all of this is going to change once I start back on my weekly schedule....
Does anybody out there relate in ANY way to my special story???????
Shannon

[lili7]

I been having lots of problems since i started herceptin 4 months ago to the point that the 5th session been cancelled by my onco. Ended up after the 2nd week of my 4th infussion in ER with symptoms almost like a stroke. Shaking all over, low grade fever ( feeling very hot) and chills within minutes of each other.Hi blood pressure as well. Numbeness on feet and hands together with lost of toe nails and skin ulcers both hands anfd feet. I tolerated well my chemo ( FEC 100) except for the usual week sickness. Felt great after it till they started Hercepttin. Asked for lower dosis but was told it was not allowed. I am given 1/ every 3 weeks at 375mg. The symptons are described as extreme peripherical neuropathy in my case together with weakness and dizziness.Could not even walk for 2 weeks.
I am stopping for 2 weeks and they will see what to do. I am Stage 1, Grade 3, ER+, PR-, HER2+++. Very scared as well. Can not function like this either!
We might have a higher toxicity level to the drug or it is exarberating the chemo symptons. Contact me if you want thru this forum. Good luck to both of us!

[tousled1]

I can sympathize with both of you. I too hate Herceptin and can't wait for my year to be up! My major complaint is severe and I do mean severe bone/joint pain. My pain was so severe that my oncologist actually delayed my Herceptin infusion for an extra week. I have tried getting the herceptin every week and also every three weeks. It doesn't seem to matter -- I still have the same symptoms.

[Lolly]

Ladies;

It's possible you're having an allergic reaction to the dilutant being used, which is normally benzyl alcohol. Here's a quote from the Genentech web page regarding dosage instructions for Herceptin, along with a link to the page:

"...If the patient has known hypersensitivity to benzyl alcohol, HERCEPTIN must be reconstituted with Sterile Water for Injection (see PRECAUTIONS (http://www.gene.com/gene/products/information/oncology/herceptin/insert.jsp#precautions#precautions)). HERCEPTIN WHICH HAS BEEN RECONSTITUTED WITH SWFI MUST BE USED IMMEDIATELY AND ANY UNUSED PORTION DISCARDED. USE OF OTHER RECONSTITUTION DILUENTS SHOULD BE AVOIDED..."

Genentech/Herceptin Page
http://www.gene.com/gene/products/i...#administration (http://www.gene.com/gene/products/information/oncology/herceptin/insert.jsp#administration)
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[tousled1]

Thanks for the info Lolly. I'm going to print it off and take it to my next visit with the oncologist.

[lili7]

Thank you for caring and answering. Going to mention to Oncologist. Been on hold for 2 weeks this coming Thursday Lets see, good news the worst symptoms subsided. .... HUG... LILI