Any one on Herceptin over 8 years?

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Marily26195
Marily26195 Member Posts: 5
edited June 2014 in HER2+ (Positive) Breast Cancer
Any one on Herceptin over 8 years?
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  • Marily26195
    Marily26195 Member Posts: 5
    edited June 2008

    I am searching for some answers before heading back to UCLA.  I have had another reaction to my Herceptin.  this time took me three weeks to recoup... Is there anyone on Hercptin over 8 years ?  and is NED?   

    Has anyone gone off Herceptin with stage IV   for over a year and remained NED?

    What have you done for side effects with Herceptin  like severe muscle spasms and exhaustion and flu symptoms?   vision problems? 

    thank you  Marily 

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  • DebbieB
    DebbieB Member Posts: 161
    edited June 2008

    Hi Marily,

    There is actually a site specifically for HER+ women at:  http://her2support.org/  When I was first dx'd with bc 7 years ago and was HER+ there wasn't a lot of information available plus herceptin was not offered unless you were stage 4 and I was stage 2.  This site had the most info on being HER+ of anything and I searched long and hard!   I know you will find lots of women there who meet the criteria in your questions. 

    Good Luck!

     Debbie

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  • nutrachris
    nutrachris Member Posts: 11
    edited June 2008

    I first started Herceptin in August 1999. After consulting several leading bc experts, we discontinued treatment 6 months ago. I am monitored using the Elisa HER2 Serum test and show no activity.

    Hugs

    Christine

    HER2 Support group 

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  • mimi1030
    mimi1030 Member Posts: 700
    edited June 2008

    My mom has no side effects from herceptin, she gets it weekly, she is stage 4.  Herceptin was not available to mom back in 2004 when she was stage 1, so she only just started taking it Sept 07 for her mets.  She does really well with it, a little drippy nose thing but that is it.

     I would love to see who has taken herceptin for 8 years though, it would be interesting to know it is still working.

    Hugs

    Michelle

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  • Marily26195
    Marily26195 Member Posts: 5
    edited June 2008

    Hi ,  Thank you all for posting.  I was diagnosed stage IV and 3+++her2, estrogen, and progesterone. all very high... I have had to take one rest on Herceptin for a very bad drop in my heart .. I am on heart meds since than and my heart went back to over 50.  I also have been NED SINCE  my Cytoxin/adriamycine.. followed by tamox and Herceptin...8 years ago. I have gradually increased side effects of cramping and flu, with the other minor stuff... I tolerated it well until 2 years ago,  than had a very bad episode.. after that we went to double diluted dose, every two weeks and run over 2 1/2 hours... Up until 6 weeks ago, again I was fine than had 3 weeks of pain, flu s/s cramping all over my body,  and no energy what so ever.  It took me three weeks to recover. I took a Herceptin break and now started the Herceptin again...(no going over 6 weeks or you need to take a loading dose again,...) My onc and I have talked about stopping... taking tykerb instead... ??  they feel I have built up antibodies to the Herceptin.. I have remained NED so long it is scarry to stop, since my cancer was so very aggressive and I was one of those who did all the correct things, breast fed ...no family hx etc, and there I was with it all over in lymph liver, lungs, and bones??? and looked like erethematous cancer large red orange like skin over breast and large tumor grown in two months from a little tiny lump....  My onc says there is no one to find out from what to do... So I again need to go with my gut... but I know there were others in the initial testing that remained on the Herceptin for much longer.. Does anyone know of someone like that???

    hugs for answering...

    Marily 

    forgot sorry  What decided you to stop Herceptin and how are your Alysa numbers? I have been doing that too and mine are still normal but after two years are now going up a bit?  

     M

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