Herceptin Allergic Reaction - Re-Posted from New Members Forum

Carina · 08-18-2006, 06:53 PM

Hello Everyone,

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

I posted my message originally on the New Members Forum but Cherlee suggested that I might wish to post here as I am likely to get more responses.

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 met with my onc today and he did not have any suggestions on how to continue with the Herceptin. He will be doing some research over the next few weeks. I have e-mailed Genetech to ask for any literature on Herceptin allergies. Hopefully someting will come of it.

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? 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.

Carina

tousled1 · 08-18-2006, 07:09 PM

Carina,

I can't help you with allergic reaction to Herceptin. Just wanted to let you know that I started Herceptin on a 3 week schedule and after the first treatment went to every week. After my first 3 week infusion I had a severe headache for about a week and extreme pain in my bones. I am getting Herceptin only. I have been on weekly Herceptin and the bone pain is increasingly getting worse. I have only had this pain since starting Herceptin. Oncologist said it's not a side effect and sent me for a PET/CT scan which I had today. Will get the results next Thursday when I see her. If my scan comes back clean then I can only believe that it is the Herceptin causing the bone pain. If that is the case, I may think about stopping Herceptin since the pain is so severe that pain medication does nothing for it.

Barbara H. · 08-18-2006, 07:59 PM

Hi Carina,
Taxol can cause severe allergic reactions which is why pre-meds are given with it. Both taxol and neulasta can cause severe bone pain. When I had it, even no pain killers would relieve the pain enough to allow me to fall asleep. Six years later I received Herceptin when I developed mets. I had a fever and bone pain ( just ached all over like the flu) with my first infusion. I had no reaction to my second infusion and have been on Herceptin for over two years. I hope that you will be allowed to continue with Herceptin and that your body will adjust.
Good luck,
Barbara H.

Sherryg683 · 08-18-2006, 09:59 PM

It really bugs me that these Oncologist don't educate themselves more on the adverse reactions of Herceptin. I have bone pains often and my sinuses are just a mess, headaches all the time. I've had numerous scans...all clean, and yet my Oncologist keeps saying that Herceptin shouldn't do this. I think too many of us are having the same reactions for it not to. I told him to come to this board and read about the effects, of course, I'm sure he's too busy and could really care less. I wouldn't get off it for anything at the moment but it's not as easy on some of us as they would like to think. And Carina, in your case I would think Tykerb would be a very good alternative...sherryg683

Carina · 09-09-2006, 06:50 AM

It has now been 9 weeks since my last incomplete Herceptin treatment. I only received 2/3 of the dose before it had to be stopped due to an anaphylactic reaction. It was my second treatment with Taxol. I have now completed Taxol yesterday (YEAH!) and will be going for allergy testing. It seems that my reaction is very rare, confirmed by the drug company and my oncologist. We are looking at ways to safely re-start Herceptin but this might mean being admitted to an ICU for a few days. Not fun news for my 6 and 9 year old girls.

It appears that I might have also had a reaction to Taxol and perhaps even Neulasta. I think that my body is just reacting to everything! Before BC, I rarely took anything other than the occasional ADVIL for a headache.

I asked my oncologist about lapatanib (Tykerb) on a compassionate basis but his initial discussions with colleagues indicated that it is not available on a compassionate basis in Canada. Does anyone have any other information? I am going to contact GlaxoSmithKline (the dist. in Canada) to hear what they have to say.

If anyone has has a severe reaction (tightness in throat and chest, all over hives, swelling of the tongue and lips) to herceptin and/or have been able to continue with herceptin, I would love to hear from you, if you're willing to share your experience (PM or post). Thanks.

Becky · 09-09-2006, 10:34 AM

I had that kind of reaction to Taxol - hives, swollen lips and tongue. The hives were all over my body for over 24 hrs. I got an epi-pen from my onc. He contemplated not giving me the 4th dose but I told him I didn't care if he had to put me in the hospital, I was getting that last dose. I took Herceptin after chemo and rads were both over. I did not get an allergic reaction to Herceptin but I thought I might considering what happened with Taxol. With Herceptin, I just get the typical side effects (runny nose etc).

With the Taxol, my onc gave me a double IV dose of benadryl and then I had to start taking benadryl tablets (2 - 50mg total) as soon as I got home and every 4 hrs afterwards for the first 24 hrs. I had to wake up at night to continue every 4 hrs. This made it so I never had to use that epi-pen (thank God because my husband would have really freaked).

Kind regards

Becky

Carina · 09-10-2006, 07:59 PM

Becky,

Thanks for sharing your experience with Taxol. I received it on Friday along with a double dose of IV Benadryl, 50 mgs of Dexamethasone (20 mg the night before, 20 mg morning of chemo and 10 ml by IV as a pre-med) and some famatodine. Got a bit of reaction during, which is when the second Benadryl IV was administered. Have continued to take 2 (4mg tabs) of Dexamethasone two days after the Taxol and started the hives and itching all over this evening. Will continue to take Benadryl as needed along with the famatodine. This usually works out to every 4 hours but maybe I will try to make it more of a regular schedule.

I am hoping as the Taxol and Neulasta will no longer be in my body for long, maybe it will allow the herceptin to be tolerated easier. Keeping my fingers crossed...

Glad that you have been able to tolerate herceptin well - that is encouraging news.

On another lighter note, I am walking in my first breast cancer fundraiser on October 1st. Needed something positive to balance all these contortions I'm going through to just be able to take the drugs I need. I'll be walking with my girls, their dad, my sisters and some friends. Can't wait.

Take care,

Carina

MJo · 09-11-2006, 08:19 AM

IMO, since Taxol is made from ewe trees and they also use castor bean oil in Taxol, anyone who is allergic to one of these things probably will at least break out in a rash. I have lots of allergies and asthma since childhood, so I was pretty worried, but I did okay. In the manufacture of Herceptin, they use mouse proteins. Ditto anyone with a mouse allergy will have a reaction. I got my allergist to test me for mouse protein allergy before I started Herceptin. Negative, thank goodness. Wouldn't it be great if there were quick, cheap allergy tests to take before chemo, instead of the "wait and see" method they use now. Doctors might say I'm wrong, but that's my opinion