Side effects of Herceptin ONLY as monotherapy?

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Racheldog
Racheldog Member Posts: 227
edited September 2021 in Managing Side Effects of Breast Cancer and Its Treatment

I am Her2+ and plan to start Herceptin ONLY as monotherapy. I had to stop chemo which caused lung issues. Seems a lot of chemo can cause lung problems and that is not talked about much. Has anyone had any issues on Herceptin with interstitial lung disease or pneumonitis? I know it can cause cardiac echo problems but would like to hear about any and all side effects that women have had on just Herceptin? I am really nervous about restarting anything.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited May 2021

    Lung inflammation is listed as a possible side effect of Herceptin. Not sure how common it is.

    My own experience is that I hav few side effects and those are minor - runny nose, watery eyes, sometimes itching which may or may not be due to the meds. My echocardiograms are good and no lung issues.

    I have been on Herceptin along with Perjeta for three and a half years for MBC.

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  • Melbo
    Melbo Member Posts: 346
    edited May 2021

    I am on kanjinti and Perjeta for the next several months until I hit my one year mark. I have the runny nose and diarrhea, which are common for both.

    I also feel lightheaded and just “off” like I’m really tired and maybe coming down with something off and in through the cycle. I had them slow my Infusions to 60 minutes each instead of the more common 30 minutes, and that has helped lessen the side effects some, although I still have them.

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  • AmyCinny
    AmyCinny Member Posts: 21
    edited May 2021

    I experienced an extremely unusual side effect from Herceptin - unbearable, uncontrollable itching. I had to switch from an every 3 week cycle to a weekly cycle with pre-meds of both Benadryl and steroids to prevent the itching. My onc had never seen this before, but thankfully, she was open-minded and willing to listen to me. In addition, my palms and soles took on an orange-ish hue and my fingers develop a similar orange-ish stripe when I walk or run. The discoloration issue remains even though I finished Herceptin more than a year ago. My onc is completely stumped about that, but since it doesn't seem to be causing problems, we just remark on it and move on.

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  • Racheldog
    Racheldog Member Posts: 227
    edited May 2021

    I did see itching was a possible side effect. Glad your onc listened to you and I am really tired of the oncologists who either fail to recognize side effects or refuse to acknowledge they exist! I am still eager to hear if anyone else had any lung issues while on Herceptin as monotherapy only? I am holding off on re-challenging this drug after the interstitial lung problems I had on Kadcyla----which has Herceptin (trazduzemab) in it. I never had any lung problems in my life before this and had to stop Kadcyla.

    Any lung issues anyone? While on Herceptin only?

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  • DeniseML
    DeniseML Member Posts: 81
    edited July 2021

    Racheldog: I completed treatment 13 of 18 last month. started Herceptin ( & Perjet) last August, stopped after 6, had mastectomy and resumed nearly 3 months from last dose, in February, 2021. received every 3 weeks to this point. NO lung issues so far, but, just had an echo and there was a significant, but asymptomatic decrease in heart function. We are holding this month's dose and will repeat echo. Not sure how this will play out.... just hoping for a recovery of function so I can finish treatments.


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  • Racheldog
    Racheldog Member Posts: 227
    edited July 2021

    Thank you DeniseSL. Yep, I am spooked about any rechallenge given what happened on Kadcyla. I only have to do 4 more Herceptin. Sort of like yourself, my break was to have radiation done and then go to the Herceptin starting next week. Yes, decrease in echo is the main issue with Herceptin and I hope you can have that resolve and go back to better cardiac function. All of this so scary and often discouraging in this journey for all of us. Keep us posted on your next echo?

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  • DeniseML
    DeniseML Member Posts: 81
    edited August 2021

    Racheldog: repeat Echo is unchanged so HP infusions are stopped with no plan to resume. I have mixed feelings about this. Wanted all treatment for best chance of disease - free survival, but, MO feels not worth the risk since only 3 missed. I guess 16 was my target to finish the year of HP. Trying to process it all. Such an abrupt end to all treatment!

    I’m finished!!! YAY!!👏👏

    Now surveillance phase!! Just when I get “comfortable “ in one phase … pushed into the next.

    Taking a deep breath or two or ten! And moving forward to a more normal life! Wish me luck and a prayer for me !

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  • Racheldog
    Racheldog Member Posts: 227
    edited August 2021

    DeniseML, I get it, we all get it. Such a journey. I am doing Herceptin (only) now and will not be doing as many as you are doing. But worry about each modality as I have had side effects as well. May I ask you if you know how much your echo was reducted--ie what % did they say your LVEF (ejection fraction) was reduced to so as you are not to proceed?

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  • Racheldog
    Racheldog Member Posts: 227
    edited September 2021

    DeniseML, so it sounds like you got through 13 Herceptins? I had my 3rd one last week. I meet with my MO tomorrow and I have lots of questions. I must be the poster child for SE during my own journey. I asked that the infusions were run slow, which was done and I even ask for a fluid bolus at the end before I go home, which they do accomodate. The first two were ok and this last one I came home and 48 hours later had dizziness, mild nausea after trying to do housework and had to sit down. Just felt off. Then I had some visual flashing that lasted for about 20 minutes. That one scared me as I have a history of retinal issues. I read that Herceptin can cause macular edema.

    That seemed to be transient and I just spent the day watching 9/11 memorials on TV and trying to hydrate myself really well. I think whatever poison we are offered (even Herceptin only) has to have SE and take a toll on us differently. I am supposed to do a "6 month" Herceptin, shorter treatment protocol that was looked at from 2019-2021 on different studies. It compared the cardiotoxicity to one full year. If I remain on that 6 month (8 total Herceptin treatments) for early stage then I only have one more infusion. I can't say that I would be unhappy with that. Next would be the AI drugs.

    Living alone and being older is a challenge with cancer. As one who was fit, working, and taking care of my whole life by myself only one year ago I have had some real soul searching about how much treatment I want to pursue in the years ahead of me. The Her2+ part just sucks, even at early stage.

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  • OhioNana1605
    OhioNana1605 Member Posts: 60
    edited September 2021

    Denise and Racheldog, I am on Herceptin and Perjeta now (getting chemo break) and wondering if you experienced any symptoms with the heart or it only showed up on echo? My last echo was ok. It’s the other side effects of watery eyes, fatigue and loss of taste I’m hoping to improve. Had labs today because of being so tired but have to wait for call to interpret.

    I too was an active senior up until this shock in March. Hang on, ladies. Better days to come.

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  • Racheldog
    Racheldog Member Posts: 227
    edited September 2021

    I have my next echo due in about two weeks. It will have been the first time I will have an echo since on Herceptin. My previous echos (when I was feeling great and still running around) were good. I am sure hoping that will not change. I, too, am tired and despite everyone saying Herceptin is a breeze it is still a foreign substance going into your system. I have had rashes here and there, some dizziness in the morning, etc. Seem to always feel better in the afternoon.

    Like everyone on here, I want to be done with all this.

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  • Racheldog
    Racheldog Member Posts: 227
    edited September 2021

    Well, I have to throw this out to this group. Has anyone experience brain fog on Herceptin?? Trying like crazy on day 7 to flush this out of my system but my once very sharp brain seems to be eluding me after this last infusion.

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