Late Herceptin

Options
kristen8594
kristen8594 Member Posts: 4
edited June 2014 in HER2+ (Positive) Breast Cancer

Hello,

I am new to this site, but not new to breast cancer.  I am Her2 +++ er/pr + and five years out from chemo and rads and just finished my five years on tamox..

My question is this....has anybody here ever received "late" herceptin?  I am peri-menopausal and cannot go on the arimidex or femara until I become post menopausal and my onc does not want to leave me with nothing for a year so she recommended herceptin every three weeks for a year.  Apparently she is recalling some patients and the insurance company has been paying for it.  I start on Monday and am a little nervous about going back in for treatments at this point but also glad to be going in now rather than waiting until something comes up.  My onc said if it were her she would take the opportunity for the hercpetin.  I haven't really found anyone that is taking hercepting this late.  I am wondering if we will start to see this now or if this just plain odd????

I am also worried about side effects.  I did get through the five years on tamox OK...maybe  little weight gain (5 or so pounds) which I CANNOT budge! 

I welcome all feedback so please if anybody has any info ....please let me know.

Thanks

Kristen

· Share on FacebookShare on Twitter

Comments

  • mmm5
    mmm5 Member Posts: 1,470
    edited May 2009

    Kristen

    If it were me I would not miss the opportunity, if you don't mind me asking what was your original dx, lymph nodes invoved etc? What type of treatment did you have?

    For example Her2 in stage 1 can reoccur sometimes up to 30% of the time as compared to much lower number for stage 1 Her2 neg gals.
    However they are now citing a more favorable prognosis for Her2 gals that do one year of Herceptin and stage 1, my Onc from MD Anderson states he only gives a 5% chance of reocurrance after one year of Herceptin and he expects that will hold up at 10 years when studies come out. ( He is head of research at one of the top Cancer Universities)
    Herceptin is doable for a year, I have had minimal side effects and am happy to have had it.

    · Share on FacebookShare on Twitter
  • kristen8594
    kristen8594 Member Posts: 4
    edited May 2009

    thanks for the reply...

    I had 1.6 cm tumor with 1/13 positive nodes.  I did dose dense 4 a/c and 4 taxol.  I was dx at 42....  Part of me feels like I am opening up a can of worms by going back into this but the other part says....how can I refuse.  I just read another post about women gaining weight on herceptin...that worries me too!!! 

    Kristen

    · Share on FacebookShare on Twitter
  • orange1
    orange1 Member Posts: 930
    edited May 2009

    Hi Kristin.  Most people don't gain weight on herceptin.  If they had chemo, they may be feeling the weight gain from tamoxifen or chemopause.

     If it were me, I would definitely do the herceptin. The side effects are so mild, I don't see a down side.

    Good luck with your decision.

    · Share on FacebookShare on Twitter
  • Brenda_R
    Brenda_R Member Posts: 509
    edited May 2009

    I actually lost weight on herceptin, but I did have bone and muscle pain. Otherwise it's pretty tolerable.  If you're her2 positive, I'd take it. It saved my life.

    · Share on FacebookShare on Twitter
  • maryannecb
    maryannecb Member Posts: 1,453
    edited May 2009

    Kristen,

    is there any evidence for this protocol? Are you part of a trial?

    I have not heard of herceptin being used in this way. Interesting.

    Some women remove their ovaries to complete the menopause, or Lupron injections to stop production. Then they can get their AI.

    I too lost my chemo weight while doing herceptin. I am about to start Zometa...a bisphosphonate, which recent studies have shown may prevent mets. Are you talking about that?

    Let us know.

    · Share on FacebookShare on Twitter
  • mmm5
    mmm5 Member Posts: 1,470
    edited May 2009

    In my opinion you are too young not to do it! I was dxed at 42 and feel it will save my life!

    Please consider, I have done much research and work in diagnostics I would not pass up the opportunity!!

    · Share on FacebookShare on Twitter
  • kristen8594
    kristen8594 Member Posts: 4
    edited May 2009

    Hi Maryann,

    This is not a trial and it is herceptin.  I have already had my muga scan and take my first dose on Monday.  There is still talk of taking my ovaries so I can go on femara.  My menapausal status has been flip flopping since chemo.  My last two blood works came back as menapausal, however I started spotting and cramping 3 months after I got off the tamox so my onc did another blood and it came back peri menapausal. She said this is normal because my body is getting back to normal after the tamox..that is why they wait 3 months before starting the femara. So, we are in the thinking stages of taking the ovaries but she feels I will be able to start femara within the year.....HOWEVER...she does not want to leave me with nothing in the mean time.  Her words..."you are young with a young family and I would not feel right doing nothing".....hence the herceptin.  I think she feels like I have done pretty well with no reoccurance as of yet and would like to keep me that way!  Herceptin and femara both work for very different things so I am sure I will be on the femara once we figure if I want the surgery or not.....or if I finally stay menapausal.

    I know I really should not worry about weight gain, especially with the benefits...however I did gain about 10 or so pounds while on the tamox...or maybe it was just weight I put back on after chemo.  All I know is I cannot seem to move the 10 pounds even though I weight train, cycle and run....go figure!

    I am a little nervous about going back into treatment, it kind of brings back all the fears and unknowns.  But, I think I am making the right decision, I don't want to have any regrets later that I wish I had taken it.

    I welcome all feedback please.....do you all think this could be a trend??? or do you think women that didn't get it will starting asking for it???

    Kristen

    · Share on FacebookShare on Twitter
  • JeninMichigan
    JeninMichigan Member Posts: 2,974
    edited May 2009

    I have been on Herceptin for a year now and will continue it (probably for life).   I have no big sideeffects.  Some dry fingertips and brittle fingernails but it is all very manageable.  Being HER2NU positive, I would be freaking out if I didn't get Herceptin!!!   

    Jennifer

    · Share on FacebookShare on Twitter

Categories