Herceptin and joint and muscle pain

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  • Pipandor
    Pipandor Member Posts: 157
    edited February 2017

    it gets better! It's now 4 months later and I have one more infusion of Herceptin to go. The pain in my feet is gone and I now feel only a bit of stiffness in my hands in the morning. Could be Herceptin but could also be age. Time will tell.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited February 2017

    I too was HER2+ and hormone negative. It definitely could be the Taxol. I hope you keep improving.

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  • Myraknits
    Myraknits Member Posts: 264
    edited March 2017

    so glad I found this thread! I had my next to last Herceptin on Tues and am having SEs like I did with TCHP...

    Nausea, heartburn, headaches, fatigue and muscle aches. This is the first time I've been this sick with H alone. Reading through the thread I realized that the aching and restless leg problems I have at night along with the pains when standing from sitting may be due to H. What a relief. I'm glad I only have 1 more infusion and look forward to seeing if any and hopefully all muscle and joint pains subside

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  • Tessscott6
    Tessscott6 Member Posts: 7
    edited March 2017

    Hi srichards. I'm happy to see someone posting recently on here. I'm having Herceptin every 3( today is my second dose) and weekly Taxol. The bone/ joint pain is brutal. I'll let you know if I come up with anything. Take care. <3




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  • Vickster66
    Vickster66 Member Posts: 3
    edited March 2017

    hi all,

    I had my last chemo (taxotere, perjeta, carboplatin ) along with herceptin 1/13/16. I had first herceptin alone infusion 2/2/16 then on 2/5/16 I went to the emergency room with severe muscle spasms in my hips and pelvic area. I had to lift my arm to move it with my other arm. Since then after every herceptin infusion every 3 weeks until 9/20/16 I had , and am still having extreme joint or muscle pain in my legs, shoulders, neck, arms and feet. It hurts to walk and I am only taking tamoxifen now. I am still having extreme chronic pain. The thing that gets me is the oncologist says they have never heard of this pain happening before. I'm sorry if anybody feels like this. It is miserable. I go to the rheumatologist 3/24. I hope to get relief then. Is anybody else having this happening to them ? I pray for all of you.

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  • Atha85
    Atha85 Member Posts: 17
    edited March 2017

    hi,

    I finished chemo in jan 2017.I had horrible pain in my thigh and calf muscle and it continued almost till feb end. However, i had started votamins , iron, zinc in mid feb and i noticed a lot of change. My pain was almost negligible. And its wearing off each day

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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2017

    Dear Atha85,

    Welcome to the BCO community. Thanks for sharing your story. We hope that you will stay connected here and keep posting. We look forward to seeing you around. We are glad that you are feeling better. The Mods

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited March 2017

    Make sure they slow your Herceptin infusion down to 60 or even 90 minutes. Don't let them rush you into 30 minutes. I didn't have any problems once the infusion time was lengthened, but you could try the same regular Claretin that is recommended for Neulasta shots if you still have problems.

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  • Leigh39
    Leigh39 Member Posts: 2
    edited April 2017

    I'm glad I found this post. I just finished chemo on March 15th and had my first Herceptin only treatment on April 5th. I have had the most terrible lower back pain and I feel like my muscles in my legs are so sore. I called my Oncologist and they said it wasn't from the herceptin. Of course it completely panicked me considering they have no explanation as to what else it could be. They just called me in something for the pain.

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  • Beatmon
    Beatmon Member Posts: 1,562
    edited April 2017

    It makes me very mad when I read over and over Docs saying they never heard of the muscle joint pain with Herceptin! Is their practice limited to one patient? Give me a break. Do these guys never network

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited July 2017

    Are you having Herceptin & Taxol? Or have you finished the Taxol? Did you get or are you getting Neulasta? All I really had was a runny nose.

    Out of left field, why not try the Claritin that is recommended for the joint pain of Neulasta. It should be regular 24 hour Claritin and not "D". Take one a day for a couple of days or a week & see what happens.

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  • Girlbizzare
    Girlbizzare Member Posts: 1
    edited November 2017

    I had my last herception infusion in March 2017 and I am still having leg pain and hip pain. Been to the dr numerous times with no relief. I have started Vitamin B complex and turmeric. Hurts worse after being active. Whether that is walking or standing. It is easing but some days it is so hard to get out of bed and function.

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  • Lorikw
    Lorikw Member Posts: 5
    edited November 2017

    Hi

    I have been done with all my treatments for about a year and you have described exactly what I am going through! I wonder if it will get better? I have a mammo and oncologist appr. Next month and I am going to bring it up...

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  • Milkjake
    Milkjake Member Posts: 1
    edited November 2017

    I am doing Herceptin every 3 weeks and I’ve only got 3 more times left but my body feels so terrible. I have pain in all my joints. Especially my back arms and legs. It is so bad that I’m having to take up to 4 pain meds a day and I was down to only 1 or 2 when I was done with Radiation. I can’t keep doing this because I can’t live my life. And now winter is coming. What do you all do for help together through the days.


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  • Moderators
    Moderators Member Posts: 25,912
    edited November 2017

    Hi all, and welcome to the newbies Milkjake and Girlbizzare! Sorry you're having pain and we hope you have some relief from it soon.

    If it helps, here are some tips for managing Bone and Joint Pain from our main site, and a list with some complementary and holistic medicine techniques that have been shown to ease the pain and discomfort caused by cancer treatments.

    Best wishes,

    From the Mods

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  • BarbD
    BarbD Member Posts: 10
    edited June 2018

    I’m doing herceptin every three weeks and am also experiencing the aches and pains, mostly on my knees and legs. The neuropathy in my feet seems to make it worse since I feel like I’m walking around in lead shoes. I’m taking lyrica for the neuropathy but it’s not helping with anything. I feel like I’ve aged 20 years. I’m tired of putting thesepoisons into my body. I’ve alreafy told my onc I’m going to pass on the Nerlynx. I’m 64 and want some quality of life. Good luck to everyone.

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  • AngelsGal57
    AngelsGal57 Member Posts: 145
    edited July 2018

    The secret is having the infusion drip for 90 minutes instead of 60 minutes. I found no problems with joint and muscle pain once I had them slow down the delivery.

    Angelsgal57

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  • BarbD
    BarbD Member Posts: 10
    edited July 2018

    I have the most horrible pain in my legs. Pretty much the bones .... this didn’t start till recently. I’m on my 13th herceptin treatment. Finished chemo in February. And so much swelling. Went for my echo this morning and my heart function appeared normal. Some one suggested Claritin for the pain. Will see my onco in a couple of days and will definitely ask about all thiis pain. Maybe I need to skip a treatment?

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  • Luvsunshine
    Luvsunshine Member Posts: 1
    edited July 2018

    I too am having knee and hip pain from Herceptin. I already have a bad knee but the Herceptin pain has added to it. Am also stiff upon rising from a sitting position and it’s hard to walk. I’ve had 14 Herceptin infusions with 3 more to go. This last time I asked my oncologist to dispense the infusion over60 minutes instead of 30 to see if it will help. My oncologist says she has not heard of Herceptin causing joint pain. Reading all the posts on this site have helped me

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