Severe reaction to 1st dose of Herceptin

[hermiracles]

Hello friends - I am just back from Hospital - yet again! - having had a severe allergic reaction to my 1st dose of Herceptin!

It was last Tuesday and I was half-way thru the infusion when I broke out in a cold swet. It was very scary. It was full-on rigors - my temp went to 39+degrees and I was freezing cold - had lock jaw and ended up with fluid on my lungs from the inflammation. I was terrified as was my hubby who was there watching it all with our 2 bubbas. The medical team were pretty shocked as well - apparently this sort of reaction is very rare and according to the literature "rarely fatal" !!??

Having spent the last 2 days in hospital feeling really ill - for supervision I had vision of never seeing my bubbas ever again and dying before I had any chance to prepare things for them if I do die - I was not in a very good head space.

Still I survived and I am home now - I can't believe the last few months. Its all happpening so fast. The Onc says they will review with the Herceptin manufacturers whether I should continue on the Herceptin (slower infusion with extra pre-med) or whether I should just switch to Tykerb. Meanwhile Im to have radiotherapy to my hip and possibly spine.

Im trying to stay positive but the reality is my head is so focused on my fears of death and my babies having no mamma. :-((

I live in a large country town - a friend is looking into possibly switching oncologists for me to someone in Sydney where maybe I would get more up to date care.

Feeling pretty scared at the moment. Grateful I can come here and talk with you folks.
Blessings all
Hermiracles

[janet/FL]

Oh dear, Hermiracles
I am shocked and saddened to read of this latest problem.
I hope they will find what went wrong. Perhaps it was the solution they mixed the Herceptin with and not the Herceptin? I think others have had them switch the solution. I sure don't think they had a problem like you did, however.
Hopefully someone will post something that can help.
I will say a prayer for you and your Miracles.
Hugs

[dhealey]

so sorry you are having such a hard time. hopefully they will find the right combo for you. Keeping you and your family in my prayers.

[Vanessa]

I am sorry to hear about your severe allergic reaction. That can be very scary. I hope you begin to feel better and I too am hoping for you that it is the solution that they mix the Herceptin with and not the Herceptin itself.

I understand your fear of not being able to raise your beautiful bubbas, I have 2-6 month old grandchildren, that I really want to be with and be a part of their lives, not to mention my 2 adult daughters. Even though it is hard at times, we must fight this with all we have. Good luck and best wishes. I will keep you in my prayers.

[Becca]

Wow, Hermiracles, that must have really scared you and your husband. Hope your onco gets this figured out soon. It is hard to stay positive at times, but with time you will get your courage back. Right now you are still reeling with the trauma of the reaction and being in the hospital. You have 2 beautiful little sweeties to help give you strength to go forward. I also will pray for you.

[Joanne S]

Oh my Hermiracles, My heart goes out to you; what a terrible ordeal for you and your hubby. I know it seems things just are not going right for you right now and everything is so overwhelming, but everything will work out for you and your bubbas. You have the will and the strength to get through this, and you will live to make wonderful memories with your family for many many years to come.

It sounds like you were very sensitive to the Herceptin and perhaps they administered too much too fast. I hope it will comfort you a little to know that I, too, had a reaction to my first Herceptin. (I also had a reaction to Taxol the first time too---but not shivering). So I know how so very scary that must have been for you. Just shortly after starting my first Herceptin infusion, I started shivering so uncontrollably hard, it hurt; and my teeth were chattering so loud, I thought they were going to break. The chemo nurses and the doctor came running and shut the IV down while they examined me. I ended up with eight blankets on me and I was making the entire floor shake---no exageration. It took quite a while, but I was fortunate that once I finally started to warm up, they restarted the H IV at a very slow rate (with a high rate of saline), and I did OK after that. And I can gladly say, I never had any reaction to Herceptin like that again; and now, I just completed my 12th month regimine.

It sounds like you had a tremendously severe reaction. I'm glad that you went to the hospital and were observed very closely. All of this is extremely scary, difficult and overwhelming for you right now, but strive to get through this and know in your heart of hearts, you will get through this.

One woman at chemo gave me advice the first time I was there getting Chemo ---she suggested eating/snacking/drinking all the while you are getting all your chemotherapy infusions. I think that this really helped me.

Try to focus on educating yourself as much as you can about your cancer. And if ever you have any doubts about anything, we are here for you to ask away, and never-ever hesitate to see another doctor for a second, and/or third opinion.

May God hold you in his loving and healing arms and lessen all your fears and anxiety,
Hugs,

[Mary Anne in TX]

Hi Hermiracles!
I had a severe reaction with my first Taxol, Carboplatin, and herceptin (I don't know which one zapped me) but from that time on they infuse me at a turtle's pace. It takes me forever to get the drugs, but I like it because I don't get afraid of another one of those reactions. When it happened they shot me good (infused) with Benedryl (how do you spell that?), waited for my face to turn normal again and my heart to slow down, and for me to get out of the super panic mode and then they restarted me. Mine didn't land me in the hospital though!
Hope you find out what can be done so that you can continue. I'm glad your friend is searching for you another option in Sydney!
Best wishes, ma

[hermiracles]

Thanks ladies for your encouragement and support - and its good to know I'm not the only one to have had some sort of reaction to these drugs!

I'm starting to feel a bit back to normal - as long as I can stay away from hospitals for a bit! lol! I do hope they maybe able to give me the herceptin - maybe more slowly etc but I guess I'll have to see what the Onc comes up with as the next step. I'm also getting a second opinion on treatment next week at one of the major teaching hospitals so I guess it will be good to get another perspective on things. I feel a bit relieved about that.

Thanks so much for being here and reaching out to help.

Blessings all
Hermiracles

[BonnieR]

A second opinion is always a good thing, I think. Even though I ended up getting THREE and all were different!! But I achieved clarity in the process.
I want to share with you that I attended a lecture at our cancer center yesterday. It was given by recovering patients. One woman had been diagnosed with an overwhelming brain tumor. Inoperable. She was given 2 months to live. She was 6 months pregnant with a boy at the time.
It was a long medical saga, but the bottom line is, she was speaking to us yesterday, 8 years later, and her son was there with her. So the message is Keep The Faith! Miracles happen all the time.

[sarah]

Sorry to hear yu had such a strong reaction. Did they give yu cortisone with the herceptin? Like Janet, I'm wondering if it isn't something they gave you with it.
sarah

[hermiracles]

Thanks Bonnie & Sarah. LOVE that story of the woman and her son! yes miracles DO happen eh? and I hope they happen for me.... and all of us! :-)

Actually I dont think they gave me anything with the Herceptin, other than Claratyne - a mild anti-histamine (which I have had before). The Docs were discussing whether I should have had some steroids as pre-med?? See what the plan for the next step is soon - should have some form of further treatment before Xmas - not sure what yet??

Thanks friends
Blessings
Hermiracles

[dhealey]

I always get an IV of Benadryl for 30 minutes before they start my herceptin, reduces the risk of reaction.

[hermiracles]

Yes - thanks for that Debbie - Benadryl keeps coming up as a useful precaution before the Herceptin - will discuss this with my Onc. Thanks for sharing :-)

Blessings
Hermiracles

[GuitarMom]

Hermiracles,

Oh, I know how scary a bad reaction can be! My first two Taxol/Herceptin infusions went just fine, but I had a week off my chemo due to low blood counts, and when I went for my third Taxol/herceptin, I had a terrible allergic reaction. I know it was the Herceptin because I had not yet been given the Taxol. My throat closed up, I couldn't breathe or swallow, and then started to cough and vomit uncontrollably, and my heart was racing. They quickly took me off the infusion and it took about 30 minutes of just being on saline for my breathing and heart rate to return to normal.

We weren't sure if I could get the Herceptin again, but I went to a specialist at Mayo Clinic who helped me to figure out what went wrong. According to all the the studies they did, the main thing that helps prevent reactions is having the right premeds, allowing enough time for them to get into your system, and slowing the infusion down.

Here's what we did for me, and I have now been able to get it twice in a row without trouble. First, I get an infusion of Decadron (a steroid), Benadryl, Pepcid, and Ativan. I also get two Tylenol tablets. We then wait a full 30 minutes after they have dripped in before starting the Herceptin to allow enough time for the premeds to take effect. The Herceptin is pumped in very slowly. I find that if it is speeded up a little, I can tell a difference and I start to feel agitated. It takes me 90 minutes to get an infusion that normally would be 30 minutes.

Maybe these things will help for you too. I hope that everything will improve for you!

DeAnn

[hermiracles]

Thanks DeAnn for the support and info - amazing eh? Glad that combo worked for you and I hope it can work for me.

I am seeing another oncologist today for a 2nd opinion on treatment and will mention this process and meds to her. Everyone has been very helpful in their responses.

Thanks friends!
Blessings
Hermiracles

[janet/FL]

I always had them give the drugs, Herceptin included, very, very slowly. Hope this and the right premeds work for you. I haven't seen anyone posting about changing what Herceptin was mixed with but I sure think I read this a year or so ago. Be sure to ask your second opinion oncologist about it.

[Roz]

Hi,
I'm not sure where you are in Austalia, I am in Sydney and had my first Herceptin injection (back in Jan 2005) at St Vincent's. They gave it to me over 1 and a half hours, and i had a severe reaction. However, I went back the following week (was only having a weekly dose then) and had the next one over 2 hours. No problem. Went on to have no problems whatsoever with Herceptin for the period of time it worked for me. So don't give up hope, you WILL get this drug to work for you!!

[Joanne S]

Janet/FL,

I found this information on the Genentch site:

HOW SUPPLIED
Herceptin (Trastuzumab) is supplied as a lyophilized, sterile powder nominally containing 440 mg Trastuzumab per vial under vacuum.
Each carton contains one vial of 440 mg Herceptin® (Trastuzumab) and one vial containing 20 mL of Bacteriostatic Water for Injection, USP, 1.1% benzyl alcohol. NDC 50242‑134‑68.


Preparation for Administration Reconstitution
Each vial of Herceptin should be reconstituted with 20 mL of BWFI, USP, 1.1% benzyl alcohol preserved, as supplied, to yield a multi‑dose solution containing 21 mg/mL Trastuzumab. The reconstituted preparation results in a colorless to pale yellow transparent solution. Parenteral drug products should be inspected visually for particulates and discoloration prior to administration. Reconstituted Herceptin must be discarded after 28 days.
Use of diluents other than BWFI should be avoided unless contraindicated. For patients with known hypersensitivity to benzyl alcohol, Herceptin must be reconstituted with Sterile Water for Injection; discard any unused portion.
Herceptin should not be mixed or diluted with other drugs. Herceptin infusions should not be administered through an IV line containing dextrose solutions.


http://www.gene.com/gene/products/information/oncology/herceptin/insert.jsp#administration

[Joanne S]

Also found on the Genentech site:

Infusion Reactions During the first infusion with Herceptin, a symptom complex most commonly consisting of chills and/or fever was observed in approximately 40% of patients in clinical trials. The symptoms were usually mild to moderate in severity and were treated with acetaminophen, diphenhydramine, and meperidine (with or without reduction in the rate of Herceptin infusion); permanent discontinuation of Herceptin for infusional toxicity was required in <1% of patients. Other signs and/or symptoms may include nausea, vomiting, pain (in some cases at tumor sites), rigors, headache, dizziness, dyspnea, hypotension, elevated blood pressure, rash, and asthenia. Infusional toxicity occurred in 21% and 35% of patients, and was severe in 1.4% and 9% of patients, on second or subsequent Herceptin infusions administered as monotherapy or in combination with chemotherapy, respectively.


Per Wikipedia: Rigor is a shaking occurring during a high fever. It occurs because cytokines and prostaglandins are released as part of an immune response and increase the set point for body temperature in the hypothalamus.

The increased set point causes the body temperature to rise (pyrexia), but also makes the patient feel cold until the new set point is reached. Rigor occurs because the patient is effectively shivering in a physiological attempt to increase body temperature to the new set point.

[hermiracles]

Thanks ladies for the extra information - it is all very helpful. I did discuss this with the 2nd Oncologist and she sees no reason for me not to try the Herceptin again - with slower infusion and increased and appropriate pre-med.

I'll let yous know how I go!
Thanks
Blessings all
Hermiracles