Herceptin and Paclitaxel

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Helenelmore
Helenelmore Member Posts: 1
edited August 2015 in HER2+ (Positive) Breast Cancer

Hi all im a newbie, a very tearful one at that.

had my first chemo + Herceptin on Monday 13th and cant believe nothing i take is taking the pain away in my joints. I also have to have heart bypass in Approx March 2016.

I think i am going to have to admit defeat and refuse anymore herceptin.

can anyone help me 😢😢😢

x x

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2015

    Hi Helen-

    We're so sorry for the pain you're having! We've moved your post here to the HER2+ positive forums, where it will get more exposure and feedback from our very knowledgeable community. We're sure someone here has some ideas of what you can try to help relieve your joint pain while you complete treatment.

    Please let us know if we help in any way!

    The Mods

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2015

    Bump! for some responses for Helen. Amazing Community, can you help?


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  • debiann
    debiann Member Posts: 1,200
    edited July 2015

    Helen, Are you sure the pain is coming from the herceptin? Did you hsve a neulasta shot? That also causes pain. 

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  • Nel138281
    Nel138281 Member Posts: 2,124
    edited July 2015

    Helen,

    Speak to your onc before you make any decisions. They tell us minimal se's from Herceptin, but joint discomfort certainly seems to be one. I took it for a year and a half and then when dx stage 4 went back on it and have had now for about 2 years. The good news is that I have no evidence of disease, although as I sit here, my knees are aching ( I have been flying and sitting all day)

    Have you tried Aleve. It lasts 12 ours and if I take it when I go to bed,I wake up without any discomfort

    Talk to your onc before you jump ship

    Be well

    Nel

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  • rainnyc
    rainnyc Member Posts: 1,289
    edited July 2015

    Helen, sorry for your pain. I agree in wondering if the pain is from the Herceptin or something else. It's worth it if you can stay on the Herceptin; it really is a wonder drug.

    Can you talk to your oncologist about it? I'm slightly less of a newbie--diagnosed in May, about 11 weeks in with Herceptin/Perjeta/Taxol--but my MO and the nurses have said multiple times to call about any side effects; they really want to hear. Also, if you have upcoming heart surgery, you might want to ask them which painkiller is the best for you, and maybe they need to increase the dosage. But no reason for you to be suffering this way. Good luck!

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  • Italychick
    Italychick Member Posts: 2,343
    edited July 2015

    Helen, I did five rounds of chemo, and have now completed two rounds of Herceptin on its own. I am finding not much in the way of side effects from Herceptin. Are you sure it is the Herceptin and not the chemo causing you pain? Somebody posted on one of these forums (I can't remember where) that chemo can shorten and affect leg muscles and cause pain. I did experience that part after round 5, but it is subsiding even though I am still doing the Herceptin. So maybe do a round of chemo without Herceptin and try to isolate the chemo from the Herceptin, if that is possible to do?

    Sorry you are in so much pain.

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  • KellyAnne13
    KellyAnne13 Member Posts: 63
    edited August 2015

    Hi Helen,

    Did you mention what type of chemo you are getting? I have just finished all of mine... thank god... I had 3 treatments of AC (couldn't do the 4th) and then 12 treatments of Paclitaxel. I can't take Herceptin because I was triple negative. Throughout all of my Paclitaxel treatments I had minimal muscle pain, until the last 2. I finished July 29 and since then have had horrendous muscle pain. I looked like I was 100 when I tried to get up. Last night a very active friend of min reminded me that Magnesium helps with muscle pain. Interestingly I had forgotten this as I've always taken it for its calming properties. I had been taking 700mg per day until I ran out... just about the time of my last treatment and when the pain started. Last night I went straight to the drugstore and bought some and took 300mg as soon as I got home, 300 before bed, 300 when I woke up today and 300 at lunch. WOW! I already feel like a new person. The pain has literally halved. I had kept reading about debilitating muscle pain while on Paclitaxel but hadn't experienced it until I ran out of Magnesium. Might be worth a try for you and anyone else out there with muscle pain :)

    Kelly

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