Allergic Reaction to Herceptin

[Carina]

Hello Everyone,

I found this site tonight and have already found it a great source of information - thanks to all for sharing your knowledge and experiences.

I am 43 and diagnosed with invasive ductal carcinoma stage IIIa in the right breast in December 2005. Though there were only 3 of 8 lymph nodes involved, the size of one of the lymph nodes suggested that perhaps more than one were matted together. The largest tumour removed was 3.7 cm with lymphatic and vascular invasion. HER2-neu ratio greater than 7.8, ER/PR positive and extensive atypia on the left side. I had a bilat mastectomy (modified radical on the right side and prophylactic on the left) on Jan. 11th, 2006. Completed 4 rounds of AC in July 2006 and started Taxol and Herceptin 3 weeks later. Have had to get Neulasta during both AC and Taxol.

Experienced hives, itching and significant pain (feet, legs mainly with some pain in the arms and sternum) for approx. 6 days after the first T + H treatment. My oncologist put this down to a reaction to Taxol. Ten minutes into the second Herceptin infusion I had hives on the face, swelling of the lips and tongue and constriction in my throat and chest. This was despite receiving Benadry and dexamethasone as pre-meds. The Herceptin was stopped and I received more Benadryl, dex and famatodine (a pepcid). However, I had the same reaction when the Herceptin was re-started. I was only able to receive 1/2 of the dose before it had to be stopped completely. I was then given a full dose of Taxol. I have continued to have allergic reactions throughout the three weeks since my last treatment and I am due for my next round on Aug. 18th. I suspect that I might be reacting to both the Taxol and Herceptin.

I really want to find a way to safely continue with Herceptin. Does anyone have any experience or knowledge successfully dealing with anaphylactic allergic reactions to Herceptin? So far my oncologist has been unable to come up with any solution. I have heard of Lapatinib (Tykerb) and Sutent but don't know if they may be suitable alternatives to Herceptin.

I know this is a long post and thank you for making your way through it. Best wishes and continued strength for each of your journeys. Take care.

[Chelee]

Carina, Welcome to the board. This is a great place for finding all kind of information on everything surrounding your DX. A bunch of wonderful people here.

I have almost the same diagnosis as you do. Its hard to say which drug is at the root of your problems. As all of them can have side affects...so its hard for the oncologist to figure it out sometimes. Since you had the Dexamethazone and benadryl that should of taken care of the hives and itching. But sometimes when you first start chemo it takes the body a bit to adjust to this stuff. I had a few problems myself, but it did get better.

As to the pain, that can be from the Taxol or the Neulasta. Neulasta can cause serious bone pain...but it is necessary to have to keep your white blood count up. But I was misrable with that stuff a few times. And the Taxol can cause many aches and pains too. I am sure your oncologist will figure it out in time. Although I know its frustrating when you just want to get going and be done with it. But the pains in your feet, legs, arms, sterum....I know I had LOTS of pain in those areas and many other you did not mention. Pain in my back, knees, all over my upper body. I just hurt every where it seemed.

Some people breeze through chemo and others of us have a bit tougher time of it. I know the first month of my herceptin I didn't have a problem the with the first infusion. But I did it weekly and the 3rd week had some problems. Super RED face...fire engine red. Face was HOT to touch...my doctors had not seen anything like it. (Not the normal steroid red face people get...this was different.) It looked like I had been out in the sun for 12 hours and was FRIED. But it did go away and I never had the problem again? Strange. I was SO AFRAID they would take the herceptin away from me. But it worked out.

Hopefully your oncologist will figure out whats going on? But maybe since you got half a dose of herceptin in you...if you get to try it again...it MIGHT go ok. It did for me. I was almost scared to try it again...but no problems after that one time. http://www.her2support.org/vbulletin/images/smilies/smile.gif I have been on herceptin weekly since Feb. 2006 and I feel fine.

Again, welcome to the board...although I am so sorry you have to go through all this like the rest of us women. Its not easy...but you just have to take one day at a time. If you don't get alot of replies here...go to the HOME page and click on the "her2group". You will get LOTS of replies there. So hang in there...many women here can help you out.

Chelee

[gin-tx]

Ask your onc if by giving the Taxol and Herceptin together is that causing the allergic reaction. The first onc I went to see after my diagnosis in April 2006 (first in 1995 on left side, this similar to yours with problems with duct and after biopsy learned it was malignant, followed by segmental mastectomy, only one lymph node affected, remainder of margins clean) was going to use Taxol and something else, went to two others and third onc I stayed with, who is using Herceptin with Aridia. I was told by first oncologist the Herceptin couldn't be given with stronger chemo drugs because of my age. I'm 66 yrs old.

I wish you the best of luck and hope they find a reason for your allergic reaction. I have had 3 treatments and so far nothing as severe as yours but I've had a few problems. Please keep me informed. We all have to stick together.

ginkott1@aol.com

[Carina]

Thanks gix-tx for your response. I will talk to my onc about your suggestion. It was a disappointing meeting today as he did not have any real suggestions of his own on how to deal with the reaction. He did not think that I would be able to continue with both the Taxol and Herceptin together, as he needed more time to complete his research. A bit disappointed that I will lose the benefit of doing Taxol and Herceptin together. Also looking at possiblity of using Lapatinib or Tykerb, if the overcoming the Herceptin allergy is not possible. Will have to get a compassionate use approval. Will continue to post what happens, in case the information is useful to others.

Take care,

Carina