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Herceptin and muscle pain

Alicethecat
Alicethecat Member Posts: 77
edited January 2017 in HER2+ (Positive) Breast Cancer

Hello ladies

Does anyone having Herceptin ever get muscle pain? I see it is buried down deep as one of the potential side-effects on the Herceptin.com website.

I've been very lucky on the whole. As long as I have Piriton, an antihistamine, in the drip before Herceptin I have no side-effects.

At least, that was the case until Herceptin dose number 15. Since then, from time to time, I've had aches in the buttocks - so much so that it hurts to sit down!

Can anyone shine a light on this?

Best wishes

Alice

Comments

  • CameraKim
    CameraKim Member Posts: 33
    edited July 2013

    I haven't experienced muscle pains but pretty harsh joint pains. My dotor seems to discount that as chemopause, but I don't believe that. I've taken Herceptin since January and my joint pain is getting worse. It' really hard to get moving in the morning. 

    I'll be interested to see what others have experienced while on Herceptin. 

  • vballmom
    vballmom Member Posts: 153
    edited July 2013

    I get the aching in the fronts of my thighs. I talked to the RNs at Genentech and they say leg aches are very common.

  • Alicethecat
    Alicethecat Member Posts: 77
    edited July 2013

    Hello CamerKim and Vballmom

    Thank you very much for posting!

    Interesting re joint pain...I had read that people can get this with Arimidex but didn't realise it could also come from Herceptin.

    Thank you so much Vballmom re your comments on leg aches. Sorry to hear you've had aching at the front of your thighs but relieved it hear it is very common!

    Best wishes

    Alice

  • lkc
    lkc Member Posts: 179
    edited July 2013

    Hi there. I had horrible leg pains with Herceptin. mostly upper thigh pain, which I needed to take Percocet! Eventually, it did go away, totally.

  • fightinhrd123
    fightinhrd123 Member Posts: 21
    edited July 2013

    Yep when i had it five years ago they were saying it didnt cause pain!  I knew it was the herceptin though!

  • linn65
    linn65 Member Posts: 1
    edited July 2013

    My ankles ache and sometimes my hands do to. And I think it feels like I have PMS emotionally too.

  • Sickofpink
    Sickofpink Member Posts: 38
    edited July 2013

    I definitely get PMS symtpoms - usually the days preceding...I'm so sick of it and months to go.

    But mainly noteice runny nose and fatigue and now I take nauseu meds that day.

    But my aches, are from the hormone blockers. I heard they go away afetr 3-4 monhts, hope so! I feel stiff and arthritic.

  • Jafa
    Jafa Member Posts: 1
    edited July 2013

    Hi, I got aching calf muscles (very sore) once for about a week and weird muscle spasms in my legs reqularly which got worse each treatment and eventually turned into painfull cramps - magnesium supplement I eventually discovered helped and stopped the cramps (double dose).

    Now 12 weeks after finishing and still get occassional cramp if I stop magnesium. 

  • marjie
    marjie Member Posts: 365
    edited July 2013

    I was always very stiff and sore - mostly my legs, and runny nose!!  It all fades away though once the Herceptin is done. 

  • marieann1020
    marieann1020 Member Posts: 15
    edited July 2013

    Hi Marjie,

    I just had my last Herceptin infusion 7/18/13

    how long does it take for the  runny nose, and sore muscles to stop?

    also my hair is growing back very slow,

    thank you

    Ann

  • 6cats
    6cats Member Posts: 199
    edited August 2013

    I have severe back and hip pain with moderately severe knee pain. The knee pain is odd since I had a bilateral knee replacement in December -- so I know it isn't the bone, but must be muscle/tendon related. I'm on Taxol too right now, so don't know if it is the combination or just the herceptin.

  • barb01
    barb01 Member Posts: 1
    edited August 2013

    I have been on herceptin for almost 4 years and get it on a weekly basis.  I never had bone or joint pain until now.  I am getting bone and muscle pain in my arms. However, I am also on faslodex shots every 4 weeks, also on it for as long as herceptin.  My breast cancer metasticised in my pelvic bone (ilium crest). 

  • MissBethy
    MissBethy Member Posts: 1
    edited February 2016

    I just finished my year of Herceptin, following radiation and Taxol for Her2+ stage one. I've been reading with interest the posts citing muscle pain. I sure have been experiencing that and it increased as I reached the end of my treatment. Muscle stiffness goes along with the pain. For me it's in my legs, especially my hamstrings and gluts.

    Can anyone tell me how long it lasted for you post-Herceptin and did you do anything or take anything that helped.


  • runaway
    runaway Member Posts: 10
    edited April 2016

    Hi, I know this topic isn't very active but I just wanted to share my experience because I found something that helped! I too, had unbelievable joint pain and muscle weakness on the herceptin. it seemed to kick in after I finished the first 5 doses of standard chemo ( the sixth was ultimately canceled for neuropathy). Anyway, it was very severe, I couldn't sleep at night because the pain of moving would wake me. I tried narcotics, anxiolytics, even marijuana, to no avail. Then a friend who is 2 years out from her BC treament mentioned claritin. Yes, I know they use that for joint pain associated with Neulasta (which I had not received). anyway, I tried it and three days later, after suffering for four straight months, I was almost back to baseline. It's been two weeks now, and I am SO SO relieved. Just wanted to share in case anyone else wants to try it....

    Joan

  • LiDu
    LiDu Member Posts: 3
    edited June 2016

    Thanks so much for the suggestion. I was taking Claritin regularly for my allergies but quit about a month ago. Since then, the muscle and join aches associated with my herceptin treatments have increased. I'm going to start Claritin again and see if that helps.

  • runaway
    runaway Member Posts: 10
    edited June 2016

    Please update and let me know- good luck!

  • Lindainroswell
    Lindainroswell Member Posts: 2
    edited January 2017

    I finished taxol and herceptin oct 25, 2016, then stronger herceptin every 3 weeks. I was told there are few if any, side effects. I have been having severe thigh, knee, calf and foot pain that had increased each week with my every 3 week infusion. Also, thumb joint pain. I finale took pain med last night. Is this the herceptin? Sounds like it might be. I will try Claritin also amd see what happens. So frustrating. Worse if i sit to long. Anyone else have this? I have to do this until July!

  • moderators
    moderators Posts: 7,689
    edited January 2017

    Hi Linda-

    We're so sorry to hear of the difficulties you're having! Hopefully the Claritin has a positive outcome!

    The Mods

  • specialk
    specialk Member Posts: 9,211
    edited January 2017

    Linda - how fast are your infusions? I received TCH every 3 weeks for 6 rounds and my Herceptin was always infused over 90 minutes. After chemo was done and I was getting Herceptin only they sped up the infusion to 30 mins - which is allowable according to the drug guidelines. After the first faster infusion I had a kotnof hip and leg pain - never had it with the slower infusion. I asked to slow the next infusion back to 90 mins - problem solved. There are a number of members here on BCO who have done this as well and had less discomfort.

  • minustwo
    minustwo Member Posts: 13,002
    edited January 2017

    I'm with Special K. I also had one "speedy" herceptin and then insisted they slow down all future infusions to 60-90 minutes. There was an argument every single time, but they did it. And it worked for me.

  • UnwillingParticipant
    UnwillingParticipant Member Posts: 20
    edited January 2017

    I'm old, and feeling 100 today.  I just started low-dose Taxol weekly plus Herceptin.  I was fine until 48 hours after my first infusion, then nausea, painful vomiting began.  Phenergan did nothing for it.  Zofran stopped that, but then I began having severe joint and muscle pain.  Ibuprofen did nothing.  I have been up all night fighting pain and chills; no fever.  Oxycodone and acetaminophen only helped for 3 hours, and so grateful I had it prescribed for post-port insertion, although I didn't need it for that.  If I can control nausea and vomiting I will stay on Herceptin, but this pain has to stop or I will.  It is intolerable.  It may be hard to tell whether it is caused by Taxol or Herceptin until I drop one.  I vote for dropping Taxol, and my onc says I can.  I will send Hubs for some Claritin when he wakes up, though, and see if that helps.  Trying Naproxen now.  I had the steroid and Benadryl, then Taxol, then Herceptin, over a 3 hour and 10 minute period. 

  • xxyzed
    xxyzed Member Posts: 39
    edited January 2017

    I had taxol fortnightly and herceptin weekly. The taxol knocked me around big time for a week each time. I lived on panedeine forte to get through it and phenergen and cortisone cream for my eye area that would swell up each infusion. The herceptin only week was fine. I now have herceptin 3 weekly. It leaves me witha sore lower back and drippy nose that clears before the nexttreatment.

  • Lindainroswell
    Lindainroswell Member Posts: 2
    edited January 2017

    thanks shi much. I go in tuesday to the oncologist and then the herceptin and i will ask for the slower infusion time. I have to believe it is the herceptin causing the flu like symptoms the day after amd the random horrible bone and joint pain. You are not the only one to validate the symptoms. So hard to figure out what is what in this whole process!

  • HelenWNZ
    HelenWNZ Member Posts: 404
    edited January 2017

    I get in and out of chairs and car seats like an old granny. Once I'm walking around things loosen up. In the mornings my poor old hands are all curled up.

    My concern is I started Femara on Friday so things could get even worse.

    The gift that keeps on giving

  • KarenInCanada
    KarenInCanada Member Posts: 194
    edited January 2017

    I am happy to have found this thread! I have been on Herceptin only now since June, every 3 weeks until April. I have been back to work for 2 and a half months and my back is so bad after standing all day. I get my infusions over 45 minutes as 30 would give me a headache. They don't seem to want to do it over any longer. I see my oncologist next week before my vacation and a month going to let him know how bad my back hurts me. It hurts more once I am done work, almost like it seizes up and is so painful to move in bed. I have resorted to extra strength Tylenol which I very seldom take anything for pain. I thought it was just getting used to working again after being off but nothing has changed, it is still just as bad. Because I work different hours sometimes i only have 12 hours between a shift which makes it even worse. It took me a while to look at the side effect list on the website because I prefer to listen to my own body's reactions. Well I finally looked and this could be Herceptin related. Will see what my MO says

  • minustwo
    minustwo Member Posts: 13,002
    edited January 2017

    Karen - don't forget, you are the patient and you're paying for this - mentally, emotionally, physically AND with hard earned bucks (even though you are in Canada). You can insist on slowing down the herception infusion. I did 60 minutes. Special K did 90 minutes. Every single time the infusion center had to call my doc for approval. But it made all the difference in the side effects. See what you MO says.

  • specialk
    specialk Member Posts: 9,211
    edited January 2017

    I was fortunate that my center (my MO was always in that office branch on the day of infusion) never gave me any resistance on slowing the infusion down, but I did try to schedule for late in the day so that most of those patients who had longer multi-drug infusions had already been and gone, and the seats were open and nurses were less busy.