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snowyday
snowyday Member Posts: 1,478

anymore but need to know, I'm on Herceptin only right now and very fatiqued, my last Muga was only 2% lower, but this stuff is giving me a hard time.  I am curious I have just started having unbearable jaw pain, it started last week. But i had my Herceptin yesterday and today it feels like my left foot is dislocated, and the jaw pain is really bad.  Does any know what this jaw pain is, I know I have read about it a long time ago but didn't pay great attention to it. Thanks ladies.

Comments

  • Bren-2007
    Bren-2007 Member Posts: 6,241
    edited February 2009

    Hi Pearl,

       I'm not on Herceptin, so I can't help there ... but I wanted to tell you that I think of you often and wish the best of everything.

    Love,

    Bren

  • my3girls
    my3girls Member Posts: 3,766
    edited February 2009

    I am not on Herceptin either. I just wanted to say...Good to see you again..and sorry that you are having so much trouble. I hope they figure out what is happening to you.

    Lisa

  • Jenniferz
    Jenniferz Member Posts: 541
    edited February 2009

    Snowyday,

    I am not on Herceptin either, but are you on anything like Zometa or another drug for osteosporsis? They have been known to cause pain.  There is a link here about it. Have you checked with your doctor?

    Jennifer 

  • karenann
    karenann Member Posts: 70
    edited February 2009

    Snowyday,

     When I was on Herceptin, I had horrible jaw and ear pain.  Most of the pain was in the back of my jaw near my ear.  Herceptin is known for ear and sinus problems.

    Hope this helps.

    Karen 

  • mke
    mke Member Posts: 584
    edited February 2009

    I thought about osteoporosis too.  There was an article posted here about the effects of drugs for that.  It sounded nasty, mandibular necrosis or something like that - but not associated with herceptin, just those bone drugs.

    I didn't have any pain with herceptin, just a runny nose which was only an incovenience.  Also it seemed like my vision deteriorated, but that might just be age.  Whatever it is that is causing you pain, I hope it goes away soon.

  • hollyann
    hollyann Member Posts: 2,992
    edited February 2009

    Snowy so good to see you posting again!.......Sorry about all the nasty SE's you are feeling......I too have not taken Herceptin but I remember some lovely ladies talking about joint pain in general when taking Herceptin....I hope you fine ease for your pain soon.......Hugs...lucy

  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited February 2009
    It's so good to see your post, and very sorry about the jaw/foot pain. I don't know their source either, yet wish to let you know you remain in my thoughts.
     
    Tender 
  • jap
    jap Member Posts: 172
    edited February 2009

    Hi everyone,

    At my last Hercepton infuson (number 10), I developed low blood pressure that became even lower in the next hour (they made me stay there).  After two + hours it went back to low normal.   SOme of the long-time infusion nurses said they had seen this only a few times but bllod pressure returns to normal. 

    Anybody had this experience or know others who have had it?

    Jo Anne

  • snowyday
    snowyday Member Posts: 1,478
    edited February 2009

    thank you everyone for your replies and kearrann thanks for letting me know it's happened to you.  I am only on herceptin now so it's the only thing causing this as far as I can see,  I will writed later my leg is twisting and I have to nap, to much napping. Great big hugs and miss you all have to write more or start drinking cooffee

  • karenann
    karenann Member Posts: 70
    edited February 2009

    I started Herceptin about a month after dose dense AC&T, so when the jaw/ear pain started, Herceptin was the only drug I was on.

    Hope this helps.

    Karen

  • moonchild64
    moonchild64 Member Posts: 49
    edited February 2009

    Jo Anne - what did the nurses consider low blood pressure? My blood pressure has been around 102/60 for the past few Herceptin only treatments.   It is usually between 108-110/70s

    I am concerned about the heart related side effects.  I had to go off Herceptin for one month back in November when my MUGA dropped from 63 to 48.  After the break, it came back up to 60 and I restarted Herceptin and am going every 3 weeks.

    Can reduced heart function cause low blood pressure?  I need to call my onc to schedule my next MUGA as it has been three months since the last one. 

    Michelle

  • jap
    jap Member Posts: 172
    edited February 2009

    Hi Michelle,

    Yes, my blood pressure has been lowere than normal since I started Hercepton.  I kept complaining to the technician who would tell me that it was still within the normal range.

    After the last Hercepton infusion I felt dizzy and the nurse took my blood pressure and found it lower than when I came in.  Over the next two hours it went down further still -- 90/65. 

    The next day I emailed my chemo oncologist who replied "Minor low blood pressure has not been reported in the literature with hercepton but I am not surprised this could happen.  It makes perfect sense that after receiving a monoclonal antibody that a person might act that way..

     I don't beleive that the problem is cardiac in origin.

    ....drink plenty, plenty of fluids (not caffeinated or alcohol).

    Let me know what your oncologist says.

    Jo Anne

  • hiker
    hiker Member Posts: 22
    edited February 2009

    To Michelle,

    It says right in the Herceptin literature: SE of herception  is low blood pressure (mild to moderate in severity.)  I question your Dr. lack of knowledge.  My blood pressure is always lower after infusion, but slowly returns to normal.  I check often because of blood pressure history.

  • moonchild64
    moonchild64 Member Posts: 49
    edited February 2009

    Thanks JoAnne and hiker for your replies and info.  I have been SO tired lately.... I understand low blood pressure can also cause fatigue.  I will increase my fluids and drink more water - though I simply can't give up my morning coffee... it's my only vice!

    My onc is out of town for two weeks, but I am going to see if I she will call in the order for my MUGA before my next Herceptin only on 2/27.   

    It is so important to stay vigilant and aware...grateful for this board to share fears, info, encouragement and not feel alone in this uncertainty.

  • jap
    jap Member Posts: 172
    edited February 2009

    Hi Hiker,

    Thanks for the information!  

    But where in the literature did you find that low blood pressure was a side effect?   I want to be able to quote it before my next infusion.

    For how long did your blood pressure stay low after an infusion?

    Thanks again,

    Jo Anne

  • Sassa
    Sassa Member Posts: 1,588
    edited February 2009

    The only adverse reaction regarding blood pressure I can find in the labeling for trastuzumab (herceptin) is an incident rate of 4% for hypertension (high blood pressure) for patients on the drug for one year. Low blood pressure is not listed or discussed.

    Hypotension  and dyspnea (shortness of breath) is noted as part of an infusion reaction (i.e, an allergic reaction to the drug) that is watched out for during herceptin infusion.

  • bethanybeane
    bethanybeane Member Posts: 334
    edited February 2009

    Hi Jo Anne, Snowy Day, and others,

    I'm really interested to hear about the jaw pain. I have ulcers at the joint inside my mouth and I can't open my jaw all the way. And, my feet are KILLING me when I first stand up -- hobbling like a 99 yo. Don't care about the drippy nose but this other stuff is annoying.

    Started Arimidex 5 weeks ago but these s/e's were prior.  Any doctor comments or advice that you've received?

    Wishing you ALL the best, Bethany

    So glad to hear from you, Jo Anne -- found you on this thread more recently and am hoping you read. Hoping your BP is not an issue at next treatment. I go in tomorrow - how about you?

  • Joanna1
    Joanna1 Member Posts: 11
    edited February 2009

    On Herceptin...

    I took Herceptin weekly for a year. My main complaint...(side effect) was a contant cough. An increased cough is listed as a possible side effect- and I had it!  Felt like I had constant drainage- down the throat- or out the nose. Finally, my body adjusted and the cough stopped. No cough syrup helped or medication prescribed. I celebrated being a 3 yr survivor on Valentines Day.  

  • plakatakr
    plakatakr Member Posts: 188
    edited February 2009

    Joanna- I hope I will be able to say that in a few years!

  • Joanna1
    Joanna1 Member Posts: 11
    edited February 2009

      Count on it..... Plakatakr!

        I was a frequent visitor to the Chatroom from Jan. 06 on.  Then, I found the No Surrender by Breast Cancer Survivors and began to post there daily.. and somewhat dropped out of the chatroom. Maybe, I felt I graduated. I was in the bc chatroom tonight and someone said- Why don't you post here. I don't know why I never did..... so tonight I did!  

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