Herceptin

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Rooster8719
Rooster8719 Member Posts: 5
edited September 2021 in HER2+ (Positive) Breast Cancer

Does anyone take Herceptin? My wife has an infusion monthly and has some pretty terrible side effects: insomnia, extreme fatigue, bone & joint pain, loose stools, and she says her muscles feel like they are drawing up. She said everything gets really tight and it’s hard to relax. Her emotions also seem to be a little more up and down. She does find a little comfort when she is able to go to the sauna and do yoga, but is currently unable to do so as she heals from a bilateral mastectomy.

I was wondering if anyone has similar side effects and has found some form of relief. Thank you.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited September 2021

    Rooster - there are literally scores of threads here discussing Herceptin. Do put it in the "search" box and start reading.

    Can you go to My Profile and put in the diagnosis & treatment plan for your wife? I'm assuming she has already had chemo before surgery & maybe radiation after - but it's hard to guess.

    Make sure that her infusion is not pushed too fast. Lost of discussion about that this week. She should insist on a 60 or 90 minute delivery.

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  • illimae
    illimae Member Posts: 5,710
    edited September 2021

    Rooster, many of us are on Herceptin but aside from loose stools the day of the infusion, most of those side effects seem like they might be from an estrogen blocker type of medication. I had similar issues on Tamoxifen. What other medications is your wife taking?

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  • Rooster8719
    Rooster8719 Member Posts: 5
    edited September 2021

    Sorry, I’m new to this. Will do further research in the topics and add her info to the profile.She takes Tamoxifen as well but those side effects don’t typically show up until after the herceptin infusion and don’t let up until a week or two before the next one.

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  • illimae
    illimae Member Posts: 5,710
    edited September 2021

    Rooster, I was on Herceptin before and after tamoxifen with very few problems but the joint pain, muscle spasms and irritability were really bad on Tamoxifen. If she gets super pissed off, it’s the meds, she doesn’t mean it, I promise.

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  • AlwaysMeC
    AlwaysMeC Member Posts: 167
    edited September 2021

    While on chemo, I was getting Kanjinti, the biosimilar to Herceptin. Now I get the Phesgo shot or Herceptin Hylecta if onc doesn't want me on Perjeta, like for before surgery. I think it's the Perjeta that causes the loose stools for me. If I have just Herceptin, I don't seem to get it.

    As far as muscle pain goes, my calf muscles got really tight with my first Phesgo shot, and then only a little less tight when I had just the Herceptin. I am hoping it's the initial reaction because of the switch from Kanjinti. I also feel a little tired the day of the shot.

    As MinusTwo stated, I have read here that some people ask for longer infusions and it seems to help.

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  • Rooster8719
    Rooster8719 Member Posts: 5
    edited September 2021

    thanks for the responses. I’ve added her info. She was initially diagnosed in 2016. After chemo her oncologist advised there was nothing to surgically remove and she has continued taking herceptin monthly ever since as well as tamoxifen daily. Recurrence same breast same area in 2020. She had a lumpectomy. Recurrence again this July- Stage 0 insitu. Bilateral mastectomy three weeks ago with expanders placed.

    I had read years ago that her symptoms were probably stemming from the tamoxifen but she seemed adamant that the symptoms were exacerbated shortly after the infusion. One of her biggest complaints is feeling like her muscles are constricting. Does anyone else feel this?

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  • illimae
    illimae Member Posts: 5,710
    edited September 2021

    Rooster, yes, I had tight muscles, mostly in my calves and feet. A cramp in the arch of ones feet is an unexpected and massive pain. I was careful not to point my toes, which seemed to trigger it and drink plenty of water. But I haven’t had that since going off tamoxifen. My MO also recommended glucosamine for the joints, it didn’t notice how helpful that was until I forgot to take them for a few days, yikes! My sympathies to your wife, I remember being in that tough spot.

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  • AMG2
    AMG2 Member Posts: 130
    edited September 2021

    Hi Rooster, I'm sorry for what you're both going through. I'm on weekly herceptin + taxol right now and had my 4th infusion set on Wed. I'm also not yet on any hormone blockers, that comes later. I have noticed calf and foot cramping post infusion, which could be herceptin. I've also had loose stools, but that could be either the herceptin or the taxol. For me, 400 mg Magnesium per day is helpful with the foot and calf cramping. Make sure supplements are ok with her oncologist before trying them, though.

    Moodiness: I have been pretty moody. For me, the worst is seeming to be Sunday mornings post infusions. I think this may have to do with the steroids wearing off. I also attribute mine to having stupid cancer and having to do stupid chemo and have my life all disrupted and feeling crummy half the time. It ticks me off and sometimes makes me grumpy.

    Hang in there, and my best to you both.

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