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Solo Herceptin after Taxol w/ Herceptin - Changes in SE?

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teaka123
teaka123 Member Posts: 29

Completed my 12 rounds of Herceptin every week with Taxol (Hooray)! I will be starting the every 3 week Herceptin only this next week. Did anyone experience changes in their side effects? I had minimal SE while on the Taxol/Herceptin - no nausea, but did have insomnia, headaches and was very tired in the last few weeks. Is it safe to assume that if I did experience nausea before I still won't? Hard to know what SE can be attributed to Taxol and what to Herceptin since some of them overlap. Thank you!

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  • ingerp
    ingerp Member Posts: 1,514
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    Herceptin is not a chemo drug so you can expect few-to-no SEs. You also won't be getting the pre-meds that you were with Taxol (the steroid often leads to insomnia). That said, I was expecting the H only to be nothing, and I can't say that it was. I realized after a few months that I felt kind of weird on tx days--like driving home almost felt like I'd been drinking, and sometimes I had to take a nap in the afternoon. I pushed protein really hard through chemo and did pretty well as a result. I had cut way back on that and got it in my head I might need more protein in my diet, even with the H only. I started eating red meat the two nights before treatment and it made a *huge* difference. Once I started that, I felt <almost> no effect from the H only.

  • teaka123
    teaka123 Member Posts: 29
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    Ingerp Thank you for the information. I'm already enjoying getting my energy level up some! I'll have my first Herceptin only this Thursday and will be sure to get some protein in my diet before.


  • specialk
    specialk Member Posts: 9,237
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    teaka - congrats on finishing Taxol - that's a big moment! Since your Herceptin will be in a larger dose you may notice some differences in how you feel after these infusions when compared with the smaller weekly doses you received with chemo. Runny nose, low grade headache, an off feeling like ingerp describes, can happen. One of the most common complaints is joint/muscle pain. This can be linked to infusion time, some oncologists will deny this, but I have experienced it myself and many others on this site have as well. When I received Herceptin with chemo my infusion time was 90 mins. for the Herceptin. I received Herceptin with Taxotere/Carboplatin every three weeks, and had no issues with pain. My first solo Herceptin was the same dose, but infused over 30 mins. I had significant hip and leg pain that lasted for the first week, enough to keep me from sleeping. I requested a drop back to a 90 minute infusion, no further problems. Additionally, I had GI distress during chemo and Herceptin infusions, but once I was done with chemo my onc nurse recommended I add a probiotic and this was a big help. Good luck!

  • minustwo
    minustwo Member Posts: 13,200
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    I too requested that my solo Hercepetin infusions remain 90 minutes. They were unhappy, but the complied. I also took Claritin the day of & for a couple of days after for the symptoms Special is describing. Who knows why it works, but it does for a lot of people.

  • dogmomrunner
    dogmomrunner Member Posts: 497
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    I am getting the every three week infusions of Herceptin also. So far I have had minimal SE. I have had some headaches but I attributed it to radiation treatment. I just stopped Rad therapy so I guess I'll see if it really was rads

  • teaka123
    teaka123 Member Posts: 29
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    Thank you all for your responses. My doctor hasn't mentioned any changes to the Herceptin dosage or infusion time. Thursday I will have lab work, meet with the Dr. and then my infusion. I'll be certain to ask her about it if she doesn't mention if there will be changes. My new countdown - Herceptin. :)

  • DiagnosisDisruption
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    I did 11 Herceptin infusions after my 6 TCHP. I didn't notice any side effects. The only thing I can think of was the bloody sore in my nose left over from TCHP finally cleared up about two months after stopping Herceptin. That being said, I did realize it was exhausting just going in and getting the infusion. I would work until 1:00, get the infusion at 2:00, and then go it to work late at 10:30 the next morning. It was also my way of telling work, hello, not done with this chemo stuff. Not quite a year out of Herceptin and everything is back to normal, if not better than before cancer diagnosis (stupid tumor was exhausting).

  • ingerp
    ingerp Member Posts: 1,514
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    teaka--I only found out accidentally that I'd be getting three times the prior dosage of H when I was only getting it every three weeks. Of course that makes sense. I stuck with the 30-minute drip. I was always anxious to get in-and-out of the treatment center as quickly as possible.

  • PJ_Seattle
    PJ_Seattle Member Posts: 34
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    I received Herceptin and Perjeta every three weeks, both with my weekly Taxol, and then for the remainder of the year after chemo ended. I had a lot of side effects when on Taxol & HP. But, when the chemo ended and I was just getting the HP infusions every three weeks, it was much better. I preferred to have mine on Fridays, and like others have said the first 24 hours I just felt a bit off and went to bed early that night. After a good night's sleep, I usually felt much better the next day.

    Best of luck!

  • Artsy01
    Artsy01 Member Posts: 2
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    Like most of you, my experience of getting the heceptin/perjeta infusions after finishing the taxol was much more positive overall. I had some fatigue, but nothing like chemo fatigue, and I was able to work the next day. I never had the dreaded diarrhea from perjeta, thank goddess. But geez, my nose ran constantly! And my fingernails grew brittle and paper-thin after about three months of herceptin/perjeta (i.e. six months after starting the herceptin with Taxol). My hair continued to grow slowly, more so than prior to treatment. But overall, I was simply delighted to be done with chemo, surgery, and radiation phases... and so grateful that each phase seemed to be easier than the one before. Wishing you an easier time, too

  • dogmomrunner
    dogmomrunner Member Posts: 497
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    I'm reviving this thread to ask some questions, My nails are really brittle, has anyone found anything to help with that? Also, anyone get short of breath or heart palpitations when exercising. My echo came back fine but I get oddly out of breath even during an easy stroll around the block. It's an occasional thing though

  • marieibrahim
    marieibrahim Member Posts: 52
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    dears

    I wonder if you could help please about using iv dexamethasone before each taxol dose ..

    I hope your herceptin doses go well for you all ..merry Christmas ,love

  • marieibrahim
    marieibrahim Member Posts: 52
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    dear DogMomRunner

    If your echo is fine I guess it is nothing serious , T.k

  • specialk
    specialk Member Posts: 9,237
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    dog mom - try keeping nails short with rounded edges and regularly use coats of either Sally Hansen Hard As Nails, or OPI nail hardener. Both are clear strengthening polishes. If you are not eating enough protein upping that may also help. Have you had a CBC done lately? If you hemoglobin is low it may be contributing to your breathlessness. Blood counts are usually depressed by chemo but some continue to experience lower than normal counts after chemo has stopped but still on targeted therapy. The extra protein may help with that also

  • fluffqueen01
    fluffqueen01 Member Posts: 1,797
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    When I started herceptin only, I felt worse than I did on the weekly taxol mix. Felt like the flu. They slowed it to 90 inutes and I switched to every two weeks and it was much better. Nails were a huge mess. I had to quit using anything beccause they were so soft and thin they were like newborn baby nails. and They hurt if I did the least little thing. Continuous runny nose.

    But overall once we changed it up, it wasn't bad.

  • amycinny
    amycinny Member Posts: 12
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    I'm late to answering this, but I had such bad side effects from the higher dose/every 3 weeks of Herceptin, I had to switch back to weekly infusions with full pre-meds of steroids and Benadryl and Pepcid.

    The side effect was uncontrolled itching. I've never experienced anything like it. The itching awakened me from sleep and NOTHING stopped it. It's a long story, but I finally figured it out and thank goodness my oncologist agreed to switch me back. I still have to use a prescription strength cortisone cream for breakthrough itching, but at least the cream does work. With the full dose every 3 weeks, the cream didn't always work.

    Another unusual side effect I've had from Herceptin is orange/yellow hands, belly, and feet. That's another side effect my oncologist never saw before. Thank goodness for the clinical pharmacologist who searched the literature and found a paper documenting one other case somewhere in either Europe or Asia. I had my last Herceptin infusion yesterday so now it's a waiting game to see if the discoloration fades.

  • dvhmouse
    dvhmouse Member Posts: 130
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    Usually I’m a lurker here, but two quick shredding nail suggestions: Healthy Hoof Cream and Nailtiques, formulas 1 & 2.

    Question, has anyone had a persistent mouth sore on Herceptin? I didn’t have any on T+HP, but I’ve got one now that never gets bad, but isn’t going away.

    Add me to the never-ending running nose and persistent headache. I just thought my migraines had come back with a vengeance

  • dogmomrunner
    dogmomrunner Member Posts: 497
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    I have had a better time of it on the Herceptin than with the Taxol. But my nose runs constantly. I also have the headaches and very brittle nails.

    AmyCinny- I haven't experienced any of that. Sorry you have had some bad SE

  • ByUmom2
    ByUmom2 Member Posts: 36
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    Hi ladies, it has been some time since I've visited this site. My youngest daughter was home from college, so that has kept me busy. She left this week to head back to the east coast so now I am trying to fight off those depressing moments...trying to keep my mind in a good spot. I am doing well on my solo Herceptin doses every 3 weeks. Definitely have some fatigue now and then. My eyelashes came back about a month or so after taxol, but have noticed lately they are thinning again. Not sure how normal that is??? I was having trouble moving my left shoulder and arm after my BMX in October so went see orthopedist. Did an MRI and I have a slight tear in my rotator cuff! Ugh!! Got a steroid injection into the shoulder joint...has definitely helped with the pain and ache. Started physical therapy yesterday to help build the muscle and get range of motion back in shoulder and arm. Hope you all are doing well!

  • dvhmouse
    dvhmouse Member Posts: 130
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    Torn rotator cuff - ouch. That’s no fun to recover from, but PT is such a great way to do it.

    Diane


  • ByUmom2
    ByUmom2 Member Posts: 36
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    dvhmouse—have you tried rinsing with baking soda and water for the mouth sore? I rinsed faithfully multiple times a day during taxol. I found d that kept any mouth sores at bay. Yes, am glad I can do PT. I had one PT visit and did some exercises here at home this weekend and can see a slight difference. Was definitely achy after PT, but I think it is going to get me back to having some range of motion.

  • dogmomrunner
    dogmomrunner Member Posts: 497
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    dvhmouse - I brushed with baking soda and rinsed with warm salt water nightly. I have also used something called Peroxl (I think that's how it's spelled) mouth rinse that my dentist recommended


  • dvhmouse
    dvhmouse Member Posts: 130
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    Thanks DogMomRunner! Unfortunately, anything high in sodium makes me gag and vomit (even just gargled or swished), so I avoid those products. I have Dr. Katz, Thera-Breath to try. Anyone have good results with that?

    Diane

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    Hello. I am popping onto this thread to ask for some info as I gear up to start a clinical trial that includes herceptin for Her2 mutated bc. I'm thinking of how to schedule my herceptin infusions.

    1. How soon after the infusion do you feel any side effects? That same day? The next day? A certain number of days later? I'm trying to see if I need to consider my choice of herceptin day in relation to my dance class and performance schedule, since dance is, as they say, my happy place.

    2. How long does the infusion take?

    Thank you!

    ShetlandPony

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    SpecialK, I read your comments above about leg pain being related to a shorter infusion time. That is valuable information.

    Anybody with input on what cycle day you feel the side effects?

  • minustwo
    minustwo Member Posts: 13,200
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    I just had mild flu like SE, but if you can work the schedule, I'd wait until day 4 for heavy duty activities. So two days after the shot day.

    I had lot of problems when I finished TCHP and went on Herceptin alone because they wanted to run it in 30 minutes. After that I insisted on 60 minutes and I did OK. Even slower would have been better but I didn't want to hang around the infusion room any longer.

  • dogmomrunner
    dogmomrunner Member Posts: 497
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    I have relatively few SE on the Herceptin. The runny nose thing though can be a pain in the butt. If I lean over or tilt my head downward, it's like a faucet. Almost projectile at times! Singing

    I accidentally posted this in the stage IV thread. So sorry about that.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063
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    DogMom, I really appreciate your taking the time to respond, even re-typing on this thread. It is encouraging to know some people have few side effects.

    MinusTwo, thank you. Whatyou tell me about infusion time is really important and you are not the only one to describe this experience. I'm glad I know so that I can just insist on slow from the beginning. I have had restless legs and headache from fast infusions of Benadryl and a chemo in the past. When you say a lot of problems are you talking about the flu-like side effects?Thanks also forthe day count. I think I will be able to pick a day that avoids one of two dance classes and also leaves me well enough to enjoy the weekend

  • minustwo
    minustwo Member Posts: 13,200
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    Pony - I really do believe the slower the better. And honestly, I didn't ever feel disabled. Just the runny nose that others describe and some aches - oh, and I was tired. But was I tired from the hercpetin or from the months of chemo & surgery & more chemo & rads.....

    Please do check back & let us know how it goes.

  • jouje53
    jouje53 Member Posts: 1
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    Did your joint and muscle pain go away after stopping the Herceptin completely? I hope. If so, how long did that take?