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ER-, PR-, Her2+ Roll call

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nevo84
nevo84 Member Posts: 55

Hello everyone

My mom was dx in November 2010. She is in her Chemo courses and only 2 sessions left. She is so well now and is very hopefull.My little niece makes her so happy and she is planning for the ceremony of her first birthday. Since she was dx I've explored in this site in different cathegories but sisters with this signature are few. So I decide to start a new thread in which we can call all   ER,PR-, HER+ gals and specially who survived for years. I hope we can make a group like triple positives and etc.

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  • Jaimieh
    Jaimieh Member Posts: 925
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    I am an er/pr- her2+ sister checking in.  I am 2 years out of dx. 

  • mtndawn
    mtndawn Member Posts: 48
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    I'm here.  Maybe this can be my BCO home.  :-)  Just finished herceptin.  Happy to be here.  Not a long term survivor yet, but I did have a complete response to chemo.  

  • KitCat1
    KitCat1 Member Posts: 13
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    Hey gals, I'm almost one year out. Did TCH, 25 rads, have  2 more Herceptons to go! Happy to be here as well! XOX

  • chicagomom
    chicagomom Member Posts: 6
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    Hi ladies-

    I finished Herceptin in Oct of 2010 - so far so good!!

  • CarylC
    CarylC Member Posts: 30
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    I'm also ER-, PR-, HER2+.  Will be starting chemo soon, 6 rounds of TCH, plus Herceptin for a year than rads.  I am 3 weeks out of a bi-mx, one side prophy. 

  • thegood5
    thegood5 Member Posts: 284
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    nice to meet you all!  I am 10 weeks out of 6 TCH, still getting Herceptin every 3 weeks until it stops working for me...1 liver met.  Herceptin melted away my tumors after just one dose!  2 lumpectomy's and a benign sternal bone biopsy in the past month.  Starting Rads next week, simulation on Wed...28 + 5 boosts.  Feeling great and lovin' life!  You HAVE to keep a positive attitude.  There are definitly days you get down, but then you need to pick yourself right back up.  Stay strong and keep fighting!  Anyone who needs a good laugh...stop over at the "OMG they found a cure for stupid" thread!

  • justriden
    justriden Member Posts: 1
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    Checking in! I'm 2 years out this past January. BMX Jan 27, 2009. Feeling great right now. TCH done, Herceptin x 1 yr done. Yea!

  • ma111
    ma111 Member Posts: 167
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    I'm here. Have mets though. Just past 1 year after rads. My nodes showed resistance to the TCH though. I had chemo first to help put my in the surgical arena. Has anyones elses cancer started growing again while on TCH?

    Has anyone's showed up with occult tumor and enlarged nodes in the axillia?

     My understanding is that this is a sucky agressive form of the crap.

    What have the rest of you ladies done when mets showed up and is it worth buying some sick time?

  • ango74
    ango74 Member Posts: 31
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    Ma111

    I was just dx with mets, to the lungs and lymphnodes in my chest and superclav.  I've been on Navelbine and Herceptin for 5 wks now.  Have you started treatment?

    You are right it is a really agressive form but there are so many new good drugs out for it.

  • Faith316
    Faith316 Member Posts: 1,088
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    Add me to this list.  On April 7, it will be 3 years since my first dx of IDC.  Lumpectomy, AC x4, Taxol x12 along with concurrent Heceptin.  Then 30 rads but dx with IBC while still on rads and Herceptin.  Stopped Herceptin, switched to Tykerb and Xeloda for 6 months.  Now in remission since August 2009.  Still on Tykerb for at least another year but doing great!

  • suemed8749
    suemed8749 Member Posts: 210
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    Hi all - I'm the "oldie" of the group so far - dx in January 2008, did 6 rounds of TCH, a year of Herceptin, and a year in the Neratinib clinical trial. Doing well (knock on wood!)

    Nice to meet everybody here - Sue

  • anonymice
    anonymice Member Posts: 52
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    Me!  I'm ER-Pr-, HER2+++.  I was only diagnosed in October, and was dxed with IBC and IDC to lend an additional level of suckitude, but my Onc says my stats and Herceptin basically will put me in a much more "normal" risk group.  I'm in the middle of a "throw the book at you" treatment, but this is again because of IBC, not my receptor status.

    I started off with A/C 4 cycles, and by the 3rd cycle all skin symptoms were clear including a tumor I could see throughout the bottom of my breast along the skin (looked like thickened skin with the "orange peel" look), all pain was gone.  I have read that the drugs like Adriamycin are particularly effective on Her2+, but they don't know why.  

    I don't know what has happened microscopically, but will find out with multiple scans the last week of April.  If tumor has shrunk enough I will have double mx on May 18, and then 6 weeks of rads in July-Aug. 

    Next week is my last chemo! 

    Yes, Her2+ is more aggressive but this causes it to respond well to chemo (because the fastest cells are the cells most injured by chemo), and we can use the Her2 protein blockers, which are still improving.  

    Many of us are or will be very lucky to be Her2+.  Some people, some of us, will just have the bad part of Her2+ without responding to the treatments, as all cancer is unpredictable.  But for most of us, just in the last few years, being Her2+ is nothing but good news.  

  • kathleen1966
    kathleen1966 Member Posts: 68
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    I am here, though not a long term survivor yet.

  • Lilah
    Lilah Member Posts: 2,631
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    I'm in the club as well :) 

    Finished Herceptin in September 2010.

  • nevo84
    nevo84 Member Posts: 55
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    Thank you everyone for joining in this thread. we should continue in this way.

  • ma111
    ma111 Member Posts: 167
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    How are you felling on the Nevalbine? It's hard for me to justify going on chemo again if it will only buy me a couple of weeks of sick time. Mine turned resistant to the TCH after just 3 doses.

    I am pursing the trails for the vaccine. How about you?

  • ma111
    ma111 Member Posts: 167
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    Kathleen,

    I also live in the pittsburgh area. I am by North Park, whata bout you?

  • HollyinMich
    HollyinMich Member Posts: 57
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    I am here too.  Like PaminWV, I also have IDC as well as IBC.  Diagnosed in August 2010.  10 1/2 weeks PFC, dd A/C followed by 12 weeks of weekly Taxol and Herceptin.  Now on Herceptin only every 3 weeks.  6 weeks out from my BMX in February.  Post surgical patho reports showed a complete response to chemo.  Hope it stays that way.  I am currently undergoing 6 weeks of radiation with one week down and working on week 2!

  • anonymice
    anonymice Member Posts: 52
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    Holly, how are rads so far? After the 7 months of chemo and the upcoming surg, I personally am very nervous about rads!!





    I think the long term survival.of the her 2 group will look vastly different in just a few years, even though it has already changed. Our sisters in recent years didn't have the benefits...first it was only metastatic trials, then ey added advanced and now it is offered to early stage, but not in all countries or all docs.



    But we are going to start seeing out stats look Much better!!

  • anonymice
    anonymice Member Posts: 52
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    I know two stage 4 folks that are her2+ one on year 6 of NED and one more than 25 yrs out, although her receptor stats might be questionable from the earliest days. She just jumped in to the random cancer pool from being 10 yrs out NED!

  • nevo84
    nevo84 Member Posts: 55
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    I'm sure too that with HERCEPTIN the stats will be changed in comming years. I just want to know what is the benefit of being HR-. Which kind of signiture has the best prognosis. My moms friend who is in this journey with my mom told us that her doctor was so pleased when he saw her ER and PR are negative, Is it true?

  • ango74
    ango74 Member Posts: 31
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    Oh Ma111, there are drugs out there that can buy you years.  I have meet many woman who TCH didn't work for and went to another drug and have been here 4-5 yrs.  Navelbine and Herceptin have been very mild for me, I'm on it weekly. The only side effects for me are tiredness. 

    I did TCH and Avastin starting in 2008, finished in October 2009.  I then did a vaccine trial.  It is the AE37 GP2 vaccine.  I think in my group I'm the only one to reccure yet from the trial Yell  That trial ened in May of 2010,  and then reccurence in Feb.

    Ma, have you looked into the TDM 1 trial? This seems to be a wonderfull drug for us Her2+ ladies?

    What's your oncologist suggesting now?  Don't get discouraged, there are more drugs out there that can kick this in the butt and give yrs.

    Take care!

  • amlg1
    amlg1 Member Posts: 77
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    I finished herceptin.August 2010.it will be 2 years since I was diagnosed and am doing great.

  • anonymice
    anonymice Member Posts: 52
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    I see, Nevo.  Well, unfortunately every case is so individual.  I do believe that generally, doctors like to see ER+/Pr+ because they can use non-chemo treatments to treat tumors, called targeted therapies, similar to our Herceptin.  

    Having said that, ER/PR + ladies often need their ovaries removed, and need to take drugs to kill the estrogen which will come from many sources in the body.  And if a source is missed, that might still feed the tumor or tumors.

    But still, the more positive receptors you have, the more treatment options are both open to you, and necessary.  

    Her2+ is the exciting one, right now, in terms of amazing results. 

  • anonymice
    anonymice Member Posts: 52
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    ango is so right, Ma....and the thing is that these days, 1 drug that might give you 2 yrs is VERY likely, when/if it fails, to have given you time to have your choice amongst other therapies.  And one day, one of them will be the cure for your (our) specific type of cancer.  

    I just did read a report that plain old Adriamycin and it's family of drugs is often very effective on Her2+ cancer and possible *only* really effective on Her2+ cancer, although they don't know why specifically.  There is the fact that the cells are fast-producing, but it doesn't explain why the Adriamycin works so specifically well compared to other chemos.  

    Adriamycin kicked serious cancer butt with me.  I don't know if the Taxol and Herceptin are working because my visible and palpable symptoms were gone before I switched regimens, but I was amazed, as was my Onc team, at the speed that it and/or Cytoxan killed the cancer. 

    I believe there are many cures for cancer, including metastatic cancer, but we just need to learn about other complexities that change treatment regimens....like the Her3 work they are doing now. Sometimes you get the cure, sometimes you still don't because we don't understand *everything*,  but keeping informed is vital. 

  • cat60
    cat60 Member Posts: 6
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    I am in this club too.  Finished Herceptin Dec 28th.  Its been 18 months since Diagonosis. Just went for my 3 month follow up Appt last week.  Bloodwork Normal, Weight I am not too happy about, mainly around my waist , I think its due to Chemopause !!

  • HollyinMich
    HollyinMich Member Posts: 57
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    PaminWV, the Adriamycin/Cytoxin combo did the same for me. I had such amazing resuls with that, but I was also able to see continued results from the Taxol/Herceptin combo as well with my IDC.  My primary IDC tumor was so large to start off with that it still continued to shrink on the Taxol/Herceptin combo.  My IBC symptoms disappeared altogether though from the Adriamycin/Cytoxin combo.  So far radiation hasn't been that bad at all.  I have some very mild skin sensitivity, but I've been using Aloe and Aquaphor religiously and that helps a lot!  The worst part is the daily appointments and I'm in and out in 15 minutes.  Not long, but it does kind of feel like a job all in itself. As I'm typing this, I am staring at an ad below for the Emilia (T-DM1) clinical trial, lol.

    Ma111 - Do not give up hope.  They just need to find a better drug combo for you.  I've heard from  lot of women who are on Navelbine and they all have said the side effects are very mild.  I wish you the best of luck!!

  • HollyinMich
    HollyinMich Member Posts: 57
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    Cathy - I am in the same boat with weight and chemopause!!!

  • HollyinMich
    HollyinMich Member Posts: 57
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    If any of you ladies wouldn't mind chiming in on this thread How has chemo affected the outcome of your BC? I would appreciate it.  I've seen a lot of negativity on the subject of chemo lately and I'd like to see a place that reflects the good chemo can do as well!  Thanks in advance ladies!!
  • thegood5
    thegood5 Member Posts: 284
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    right there with you girls!  I've gained 25 lbs since this journey began, and I saw on another thread about Herceptin that almost everyone on there complained about gaining weight in their mid section.