Herceptin Allergic Reaction?

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DGHoff
DGHoff Member Posts: 624
edited July 2020 in HER2+ (Positive) Breast Cancer
Herceptin Allergic Reaction?
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  • DGHoff
    DGHoff Member Posts: 624
    edited October 2007

    Hi All,

    I've finished four rounds of A/C and have started 12 weekly Taxol/Herceptin. The first two rounds went OK, but on my third round last Friday, I had a terrible reaction to Herceptin during the infusion. About ten minutes into the infusion, I started to feel like I couldn't swallow, and called for the nurse right away. Within seconds, I started to cough and gasp for breath, and then I got nauseous and vomited a few times. They stopped the infusion right away and kept me on a saline drip for about 30 minutes until I was mostly back to normal except for a sore throat from all the gasping and coughing. We discontinued the rest of the Herceptin and I finished up with the Taxol with no problems.

    Now, my doctor is very concerned about giving it to me again, as am I. Has anybody else ever had a reaction like this to Herceptin? I half expected it with Taxol, but not Herceptin. Obviously, I want to continue to get the full course of it since I'm Her2+, but I sure don't want to go through that experience again and risk an even worse reaction.  

    I'm pretty certain that the first two times, we did the Taxol infusion first, and then Herceptin. Could that make a difference? 

    DeAnn  

      

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  • bevnurse
    bevnurse Member Posts: 274
    edited October 2007

    When I was doing Herceptin they always gave me benedryl (and compazine and tylenol) as one of my pre-meds so I guess they anticipate possible reactions. I didn't have any problems so by the end of my year I was able to take the infusion without any pre-meds at all. You didn't mention what if any pre-meds you were on...maybe you could make this suggestion?

    Bev 

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  • DGHoff
    DGHoff Member Posts: 624
    edited October 2007

    Hi Bev,

    Thanks for the reply. Sorry, I should have mentioned that I did get Benadryl, Decadron, and Pepcid for pre-meds. What seems strange is that I did fine with the first two times, so it was really unexpected. 

    DeAnn  

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  • abbyglp
    abbyglp Member Posts: 417
    edited October 2007

    Deann, I was getting benadryl before I got my infusion of herceptin and taxol. When the 12 weeks were up with taxol, my onc did not d/c the benadryl so the nurse gave it to me, I was experiencing the same symptoms like I had a lump in my throat, I would sit up quickly to take a breath, One of the nurses finaly came up with the idea that It might be the benadryl causing this reaction and it was. They changed my premed to just pepsid and the feeling went away. I finished my last herceptin today. whooo yay!!! I will miss the nurses but not going there every week. Hope your onc figures it out, Herceptin is our miracle drug, and I hope you are able to get your full years worth. hugs abby

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  • DGHoff
    DGHoff Member Posts: 624
    edited October 2007

    Hi Abby,

    Thanks so much for your comments! I have been wondering about the Benadryl myself since I've always really had to work a little harder to swallow when I get it. I just chalked it up to me being so sleepy, but I think you might be right. I'll certainly discuss that with my onc this Friday when I go in for my tx.  

    And congrats on finishing your last Herceptin! Hooray! 

    DeAnn 

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  • debic
    debic Member Posts: 216
    edited October 2007

    Abby,

    You said the first two times you had the Taxol first.  That is theway they gave me mine. premeds taxol then herceptin.  The nurses told me herceptin is last.  don't know if that makes a difference I would ask--I ask everything!!!

    Debi

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2007

    Well, I went for my weekly chemo session today, and my onc felt it was too risky for me to do the Herceptin again. She is convinced that the allergic reaction didn't have anything to do with the Benadryl or the order of the drugs', and since I had a pretty bad reaction last time, I could have an even worse, life-threatening reaction this time.  So, I'm pretty bummed I can't get the Herceptin, but she recommended that I go back to Mayo Clinic (where I got my second opinion and they prescibed the regimen I've been doing), to see if there is anything they have to say about the topic and to see if there is something else we can do.

    So. No Herceptin for me for now. Don't know what my options might be, but I don't want to kill cancer only to have my heart fail from a bad reaction. Maybe we've managed to get any random Her2 cancer cells with the AC, the Taxol, and the few Herceptins I did get. 

    Thanks for your help, everyone! If you know anybody in the same boat as me, any further advice or knowledge is appreciated.

    DeAnn  

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  • MarciaA
    MarciaA Member Posts: 178
    edited November 2007

    DeAnn, I too had reactions to Herceptin.  I was able to get in only 12 weeks before the symptoms were affecting my quality of life. My MUGA  results were going down and I felt awful.   My oncologist said that the one year of herceptin is a guideline.  Since Herceptin is fairly new, there has not been enough time and studies done to know if that amount of time is actually long enough or unnecessarily too long to do the job. Sometimes you have to go with your gut and hope for the best.

    Lets just hope and pray you have beaten cancer with what you have done. 

    Best wishes

    MarciaA.

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2007

    Hi Marcia,

    Thanks for your comments as well. I actually feel a lot better this week not having gotten the Herceptin with my weekly Taxol. I have far more energy, I don't feel all punky, and I haven't gotten nearly as many hot flashes as I did with the Herceptin. So, maybe it's not so bad that I can't get it. I just read on another thread and Evening Primrose Oil can be a huge benefit and helps to keep the Her2 cells from dividing. It certainly can't hurt to add a little to my next smoothie!

    DeAnn  

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  • MarciaA
    MarciaA Member Posts: 178
    edited November 2007

    DeAnn, Does that info on Evening Primrose Oil have research to back up the Her2 claim?  If so how much Oil?  Just curious, I am not ruling out anything Either!

    I will tell you when I had to stop Herceptin, I asked my doctors what would happen if I had a recurrence...now it seems that Tykerb would be an option.  I hope none of us have to consider what we would do with a recurrence.  I think that with A/C and a taxol, we fought it as hard as we could with a regimen that has strong statistics to back up effectiveness.

    I am happy you have more energy! 

    Take care

    MarciaA.

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2007

    Hi Marcia,

    It's the GLA (gamma lineolinic acid) in Primrose oil that is the key. It can also be found in Borage oil and some other oils. Primrose oil does have a higher Omega 6 content, so you have to make sure you are getting enough Omega 3s as well to balance out. There is no specific guideline, but I've been doing a teaspoon of flax oil and a tablespoon of ground flaxseed in my yogurt every morning. I'm thinking I will add a teaspoon of Borage oil (apparently it has a better ratio of omega 3 to omega 6) as well to my concoction. The research suggested that GLA might help even Taxol to work better, so as long as I have 8 more Taxols to go, I might as well see what I can do to help it along!

    I have an appt at Mayo Clinic in December to discuss Tykerb to see if it is even an option for me at this point.

    Thanks!

    DeAnn

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2007

    Just wanted to update on my original posting that I met with an oncologist at Mayo Clinic who identified some possible reasons for my reaction. First, I'm getting weekly Taxol/Herceptin, but I had a week off because I was hospitalized for neutropenia. That break in my treatment meant that I should have been treated the next time as though it was my first Herceptin infusion with a slower infusion rate. Second, they only waited five minutes between my premeds and starting the Herceptin. There should have been at least 20 minutes, but preferably 30 minutes in between.

    So, it seems we will retry Herceptin at my next chemo and hope that making those changes will resolve the situation.  

    Thanks to all who posted and offered advice!

    DeAnn  

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  • SANDER2
    SANDER2 Member Posts: 13
    edited November 2007

    So sorry to hear that you had a bad reaction! I can totally relate to your situation as I had a very nasty case of "hives" from herceptin that caused me to itch uncontrollably at times but thank God not constant! Mostly my hands & feet but the longer I took herceptin, the worse the itching got & the hives then moved to my whole body. I am debating whether to resume with herceptin b/c of this nasty side effect. Please keep us posted on what you decide to do w/your treatment. I had taxol & herceptin too & taxol was given to me before herceptin with each infusion. In reading other people's comments, it sounds like herceptin has done wonderful things and I am very grateful that there is a "miracle" drug to treat metastic (HER2t cancer). I just wish that I could get through the nasty side effects with my sanity in tact! I wish you the best! I know you don't have an easy decision to make. --Take Care!

    God Bless!  Shawna 

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  • DGHoff
    DGHoff Member Posts: 624
    edited November 2007


    Hey, I was able to be rechallenged with the Herceptin and everything went just fine! So, just a word of warning to anyone who has been getting Herceptin on a regular basis, and you have to miss a scheduled treatment - make sure they restart you with a slower infusion rate. This can make a big, big difference and help prevent you from having reactions. Make sure they also wait a minimum of 20 minutes, preferably 30, after giving you premeds before they start any chemo drugs!  I also got Tyelenol and Ativan in my premeds, and although I was a lot sleepier, I did not get the swollen dry throat from the Benadryl this time. So, a total success today!!

    DeAnn  

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  • airstriptrip
    airstriptrip Member Posts: 13
    edited March 2019

    I finished my 12 weeks of taxol and herceptin and went on to the first herceptin alone. I was O.K. when it was administered but went home with hives and itching which continued. It got so bad in one week I looked like an alligator. Dermalologist not sure. I am not sure.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited March 2019

    Even though many will say we can’t be allergic to Herceptin, I firmly believe any of these drugs we are given can and do react differently with different people. I finished the Taxotere portion in 2015 and have been on H&P continually. I had an infusion reaction last year with shortness of breath, itching wheezing...all out of the blue. I itch after every treatment. Weirdly, I’ve quit breaking out.

    Now I’m taking 1/3 dose of Herceptin weekly over an hour. Weaned back off the dex and Benadryl that was restarted after the reaction because they both make me feel horrible.

    I’m getting close to 5 years on it....not anywhere near what others have done but I’m feeling so weary of it

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  • JanetMara
    JanetMara Member Posts: 179
    edited April 2019

    Hi DeAnn,

    MO usually give HERCEPTIN and TAXOL every 3 weeks,just wondered why it was weekly. I also had THCP every 3 weeks and the side effects were so horrible that up to now I am still suffering from on and off sore throat ,pain on my L lung and suffered from rattles on my chest whenever i lie down,my PRIMARY MD gave me Nebulizer treatments and as often as I remember,i do deep breathing exercises and it helped me, itching all over and NEUROPATHY. Your ONCO should also send you for ECHOCARDIOGRAM every 12 weeks because it causes CONGESTIVE HEART FAILURE. Herceptin is very good for HER2+ though together with PERJETA,TAXOL AND CARBOPLATIN, because I had only 2 doses and made the tumor on my L collarbone shrank and my PET SCAN result said essentially resolved.I hope it didn't go anywhere,What a horrible disease to have.

    What I believed to have helped much in the shrinkage is I went on raw diet (raw vegetables and fruits ,avoiding animal proteins and I stopped sugar completely.I have read that sugar sustains or feeds cancer,if we avoid sugar,it will starve the cancer cells and eventually they die.

    Hi AIRSTRIPTRIP and BEATMON

    I think you need to have EHOCARDIOGRAM every 12 weeks because HERCEPTION ca cause you CHF.

    Hi SANDER2

    I also had a lot of itching everywhere but no rashes,I thought it was because of the cold weather.

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  • imgoing2beatthis
    imgoing2beatthis Member Posts: 2
    edited July 2020

    After 4 doses of AC they did the loading dose of Perjeta which went fine, 30 minutes into the Herceptin I reacted with breathing issues, epileptic reaction, vomiting, chills and frankly I wasn't sure I'd be ok. The nurses jumped into action and medicated me quickly with about 5 things and finally it stopped. They called 911 and I was sent to the hospital for observation as my heart was so high. Spent one night and I was exhausted form the ordeal. I'm terrified now to have that drug and it's causing me to rethink my treatment plan. It was the worst experience of my life.

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