recurrence..

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nine_rugrats
nine_rugrats Member Posts: 106
edited June 2014 in HER2+ (Positive) Breast Cancer
recurrence..
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  • nine_rugrats
    nine_rugrats Member Posts: 106
    edited May 2010

    I was dx stage 1 two yrs ago.  Did lump, rad, chemo, herceptin for a year. I finished up herceptin july  09'.  Had some shouler pain a few months ago and then had a mammo and showed swollen node under arm.  Had biopsy last week and it was same cancer and had 19 nodes removed and all were pos.  Doing pet scan tue. 

    Anyway, why did herceptin not work.  my onc is saying i will be doing herceptin for a long time and also  probably tykerb.  Tough chemo.  Wil know more next fri after the pet scan report.  AM really hoping its not spread.  On one hand i think 19/19 nodes isnt good.  But then today i was thinking maybe they did their job and kept it from spreading.  Also, they were 6cm-3mm.  Dont know how many were that big, but it did say "the 6cm node could be a cluster" dont know what that means.  

    Tonya

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  • Kate0574
    Kate0574 Member Posts: 120
    edited May 2010

    Hi Tonya, so sorry to hear of your reoccurance.  I was just reading your post and I can tell you about the cluster. When I have my lymph nodes removed three of them were positive out of 14 and that the nodes were in a cluster.... I was told be my surgeon at the time of surgey that is better.... then confirmed by my Oncologist the same thing, They fuse together lowering the spread into the stems then ino other body parts, I would ask if they were in the stems...

     Are you having a Mascectomy?

    GL to your though your journey, you will do great.... ((HUGS))

    Kate

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  • swimangel72
    swimangel72 Member Posts: 1,989
    edited June 2010

    Chandler - is your onc having the new tumors tested to be sure they are STILL Her2+? Sometimes with a recurrence, the tumors changed status - also it IS possible that your original tumor was not Her2+ - if they still have that tumor sample, maybe an independent lab could retest that - at least it would answer your question as to why Herceptin didn't work the first time around. You really need your new tumors retested - why undergo Herceptin again if the tumor is Her2-?  Good luck - I'll be praying that God's angels watch over you!

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  • momto2angels
    momto2angels Member Posts: 289
    edited June 2010

    Hi Tonya, do be sure to have your tumors retested now.  I was HER2- in 2007 and had found mets in 2010.  They retested me and now I'm HER2+. 

    Be sure to have the FISH test done!

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  • my2boys
    my2boys Member Posts: 339
    edited June 2010

    Hi Tonya,

    I was diagnosed in 2008 with Her2+/ ER-/PR- cancer.  I underwent a mastectomy and had chemo TCH, followed by herceptin for one year.  Once I was finished, I had a small lump grow in the mastectomy breast where the original cancer was.  They determined that it was a recurrence and not a new cancer.  My oncologist had me do chemo AGAIN...grrrr.  I'm about 1/2 way through.  This time A/C and Taxol with Herceptin.  I will also be starting Tykerb for one year.  Tykerb is good because it is used when Herceptin doesn't do a great job.  Because the cancer is now ER+ also, I will be also be doing arimidex for 5 years.

    If I were you, I would have the slides looked at for a second opinion on status.  Mine grew back Her2+/ER+/PR+ and the original cancer two years ago was strongly Her2+, and ER/PR negative.

    My wish for you is that you are successful in your second round of treatment and I am hopeful that you caught this early again.  Please keep us updated on how you are doing.

    Stay strong.

    Anne

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  • nine_rugrats
    nine_rugrats Member Posts: 106
    edited June 2010

    Yeah, he sent it off to be tested again, i need to remember to ask about it when i see him next week.  He told me i will be adding Tykerb in the future...which i dont know about cause i have heard the horror stories :/

    I am doing taxetere/carbo/herceptin.  I have had one tx so far and it sucked!  i was so sick for like 5 days.  I am doing 6 tx every 3 weeks.  Then herceptin forever...

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  • DianeKS
    DianeKS Member Posts: 241
    edited June 2010

    Hi Tonya,

       Chemo second time around does suck!  There... having said that I am hoping that the lymph nodes did their job and I like to believe your theory.  My recurrence happened in roughly the same time frame dx 06 bilat mastectomy with -ve SNB.  The recurrence happened 09 in the lymph nodes 9/23 +ve.  I don't know anything about clusters  NED elsewhere and clear scans following chemo so far.

       What drew me to respond was the number of responses who had their markers change.  My ER/PR were both +ve, HER 2 -ve at diagnosis, now I am ER+ve, PR-ve and HER 2 +ve.  I'm told this is not common, and have tried to find some more info as to why it happens etc. but not much out there so I moved on and hope the Herceptin helps.  Needed FISH testing to make a definite decision at recurrence as results were weak positive.

      One day at a time and my new favorite from one of the other forums ' you don't have to be brave, you just have to show up'. At the beginning of treatment I didn't want to go and thought I'd never get to the end...Monday will be my last rad, so of course you can.  That day will come for you too.  Good luck.

      Diane

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  • Carolina59
    Carolina59 Member Posts: 232
    edited June 2010

    Tonya,

    So sorry you're going through chemo again. Ask for the anti-nausea med Emend. It's the only anti-nausea med. that helped me. I lost 8 lbs in the first week after my 1st TCH tx. After that, they prescribed Emend. You start it the day before the tx, so don't wait until tx day to ask for it. (And insist on it if they balk and say you don't need it.) Make sure your ins. covers it--it's extremely expensive.

    Also, going in to get an infusion of fluids a few days after the tx really helped me feel better because I got so dehydrated due to the nausea.

    The dr. also prescribed the active ingredient in marijuana for me (can't remember what it's called now)--I didn't fill the script. Instead, a friend gave me some pot, which was better because I felt like I could control the dose. It helped with nausea and was also the only thing that calmed the feeling that I was vibrating like a tuning fork on days 3/4 after tx.

    I hope this new tx works to beat the hell out of that cancer.

    best wishes, Carolina 

     

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