sudden allergy to herceptin????

SoCalGal · 03-04-2011, 12:34 AM

Today was the second time I had to stop my herceptin due to an allergic reaction. 3 weeks ago I had a numbness run up both arms and across my chest plus red hot ears, pounding heart, etc. (etc?!). I was able to finish my drip last time but not today.

Today, with the infusion running at the babiest speed, about 20 seconds into the drip I could tell I was starting to feel weird. Weird throat feeling and then red hot ears and pounding heart.

I am so worried that I will no longer be able to use herceptin. AND THEN WHAT? And will I also "be allergic" to TDM1????? RunDMC was my backup plan.

Right now I am foggy from all the antihistamines and ativan. Decadron is a deal breaker for me - can't hang with the steroids. Why would my body suddenly decide to be allergic to Herceptin? Anyone with any thoughts? My false sense of security is gone.

sarah · 03-04-2011, 01:16 AM

weird. What anti-allergy drug do they give you before the herceptin? could it be you need a different one?
Has Dr Slamon any information on this?
have you taken other drugs intravenously without having allergies? Wondering if it could be the tubing???
Hope you find a solution to this problem.
good luck
health and happiness
sarah

Mary L · 03-04-2011, 12:17 PM

I always had Benadryl before my Herceptin. On one of my Herceptin visits, the nurse didn't give it to me. I asked her why and she said well, you have been receiving Herceptin for several years and we don't think you need the Benadryl anymore. I had all of the symptoms that you discribed. I felt like I had an Elephant sitting on my chest. They called my onc who's office is right down the hall. He was furious with this nurse. I always got my Herceptin at a 2 hour drip. One day another nurse gave it to me in 1/2 hour. I ended up in the ER. I definately had an allergy to Herceptin but my onc took precautions. By the way, the nurse that said I didn't need Benadryl doesn't work there anymore. Hope they can figure it out as Herceptin is such a miracle and has saved my life and many, many others. Best Wishes, Mary L

Jackie07 · 03-04-2011, 01:13 PM

I also had had Benadryl before the infusion. I think I was also given two Tylenols (?) Please ask your doctor to give you a different allergy meds if you'd been pretreated.

SoCalGal · 03-04-2011, 02:55 PM

Thanks - I've never had to be pre-treated. I guess moving forward they will have to do something. I cannot tolerate decadron so hopefully benedryl will do the trick. I don't understand why the allergy attack won't return once the benedryl wears off ? I am still groggy from yesterday!!

chrisy · 03-04-2011, 03:07 PM

Wow that is different! Hope the benadryl does the trick for you flori.

StephN · 03-04-2011, 03:42 PM

Geez, so sorry to hear of this complication, Flori.

I have never heard of Decadron given as a premed for Herceptin, but I guess anything is possible. I got the dreaded "D" drug when I had Taxotere, and a small dose with my Taxol and brain mets.

Maybe attempting to contact Dr. Slamon would be a good idea, or maybe he has written about this somewhere.

Best thoughts coming to you about this. Like having the rug jerked out from under you.

Darlene Denise · 03-04-2011, 03:44 PM

I had to do Benedryl with mine when I changed from weekly doses to three week dosing. Did it for a few months and then was able to eliminate the Benedryl. Maybe a change in dosing schedule might help too?

Good luck!!

Becky · 03-05-2011, 09:45 AM

Dear Flori

Besides having a 50 mg Benadryl pretreatment, why don't you ask your onc if you can take daily Zyrtec or Claritin? This may also assist you.

Adults can easily develop allergies - for example, not having Spring allergies as a child but getting them later in life. A 24 hr daily allergy pill may be of help to you.

Sheila · 03-06-2011, 06:23 AM

Flori
Although anyone can form an allergic response to just about anything, anytime, it is still important to try to understand why you are having these reactions. I would first check to see if they are using anything different when the reconstitute or mix the Herceptin, even a different brand or company that makes the bags of NS they mix it in...even the bag itself, and also check if they have changed brands or companies that make the flush syringes or the Heparin....at my hospital, they had a problem with a certain Lot # of Heparin and people had problems.....the Benedryl....even 50mg IV will help prevent the reaction, and they may add 2 tylenol....at least you will get a good rest while you get the Herceptin....hoping this turns around fo you!

SoCalGal · 03-07-2011, 12:44 PM

I am composing an email to my doc right now, to ask all the questions raised here - including changing the dosing schedule. I am not wanting to wait a whole month to work it out - I already don't like "just" being on the single agent - so now - being on "no" agent is, well, it's just asking too much of me. I am already on borrowed time - I don't want to return any of it!!!!
Thanks for all the feedback. Gratitude to all, Flori

StephN · 03-07-2011, 12:57 PM

Dear Flori -
Hope your doc will take the time to fully answer your list.

Since I have allergies of some kind year around, I take small doses of Allegra/fexaphenadine daily. Maybe this is one reason I never had any problem with taking Herceptin for some 8 years.

I also had the runny nose from this drug, but my time release allergy pills kept that to a minimum. Allegra does not dry my eyes as much as Benadryl.

I found that Zyrtec did not work as well as the Allegra. Whereas my Mom found Zyrtec more effective for her allergies. You may like to try these instead of Benadryl, if there were no changes in the supplies used with the drug that Sheila mentioned.

You are living on time you deserve and have earned by hard work.

SoCalGal · 03-07-2011, 04:26 PM

"You are living on time you deserve and have earned by hard work."
Thank you for those words.