Herceptin withdrawal??

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Has anyone ever suffered from total body cramps after finishing herceptin? I get them all over-my neck, toes, legs, chest... I even saw a knot rise up in my breast. My labs are all normal. No electrolyte imbalance. Skelexan -muscle relaxant helps but it makes me have a heart arrythmia. Has anyone had anything like this? My onc's office says it is unrelated to therapy and my PCP says my labs are all normal. The neck spasms are so bad I have to stop what I am doing to catch my breath. They cause me to have horrible headaches. I almost want to go back on Herceptin just to stop this cuz it hurts.

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  • Msruby
    Msruby Member Posts: 1
    edited December 2010

    Your comment made me feel a lot better.  I was on Herceptin two years ago and stopped for about 1 year with no problems.  I started herceptin in late January of 2010 and had a negative start which was corrected when the Dr also gave me benadryl just before the IV.  Unfortunately the breast cancer metastisized in my bones (found about 4 weeks ago) so obvious Herceptin wasn't working so my Dr. stopped it.  Since then I'm going through all kinds of yuck including cramps & spasms through my chest, back, arms, abdomen, toes and calves.  I'm also experiencing a load of other problems.  Thought I was going nuts.  Headaches, nausea, dry mouth, tightness in chest and the list goes on and on.....It's been 6 weeks with no herceptin and if this how I'm going to feel BEFORE it gets worse, I'd rather be back on Herceptin also. Puzzling.  Se the Dr. next week.  If I find out anything I'll share with you.  Hope you will do the same. Thanks.  Sorry for rambling on. 

  • carcharm
    carcharm Member Posts: 486
    edited January 2011

    Damn... sorry to hear about the bone mets..that sucks. Since this posting I fractured my ankle and have stopped taking skelexan as I am on percocet for pain. My spasms have settled but it is December and I finished treatment in August. I am convinced it was withdrawal from Herceptin.

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