herceptin years after chemo anyone?

Options
bre
bre Member Posts: 89
edited June 2014 in HER2+ (Positive) Breast Cancer

I'm meeting with the oncologist to talk about herceptin and would like to know if there is anyone out there who has done herceptin years after original chemo.  1/04  Age 49 at  Dx- 1.7cm tumor plus malignant microcalcifications, er+/pr-/her2+++, grade 3, nuclear grade 8, no positive nodes.  TX:  mastectomy, sentinel and regular lymph node dissection, A/C x 4, tamoxifen x 10 months and switched to arimidex.  Just started zometa every 6 months for bone loss.    Onc says they are now offering herceptin to all who are positive although they don't know how much good it will do since it's so late after chemo.  No recurrence so far.  Heart is in good shape.  I'm afraid if I don't do it, I would always wonder if it recurred what would have happened if I had taken it.  I'm strongly leaning toward taking the herceptin if insurance will help pay for it.  Any thoughts?

· Share on FacebookShare on Twitter

Comments

  • DianaT
    DianaT Member Posts: 532
    edited December 2008

    I can't answer that for you since I am taking herceptin and started taking it with chemo.  I will tell you that my oncologist called all his patients that were Her2+ back and offered them herceptin.  He highly encouraged it, those were his words.  I would have an in detailed discussion with the onc and see if he can help you make sure the insurance covers it. 

    God Bless 

    · Share on FacebookShare on Twitter
  • KLynn
    KLynn Member Posts: 1,407
    edited December 2008

    Hey there Bre,

    I use to talk to you in the chat room all the time about a year or so ago, I haven't been there much, mostly post here. Anyway, Yes yes yes, if I were you I would start on the Herceptin. Thats just my opinion, but I still think if I had stayed on the herceptin, I wouldn't have gotten my recur..I had the herceptin for a year after my chemo as part of one of the hercptin trials, that was over 8 years ago. I did have a recur to the lungs at about the 5 yr, mark. that was in 2006. I had chemo again and herceptin for 2yrs. and went into remission . I have been getting only herceptin now for the last yr. and so far so good . My blood work seems to be good, and all my recent scans were good..I get my treatment every three weeks. I have so much faith in hercpetin, for me at least..Like I said, I think if I had stayed on it from the beginning maybe I wouldn't have had the recur, but who really knows..It wasn't part of the protocall then. I get a 2-d echo of the heart every 3 months, and I haven't had any problems yet..The only really s/e I get is the runny nose all the time, which seems to cause me some sinus problems at times..I get packed up without knowing it, and end up sick during the winter months with pressure..Otherwise not too many other problems with it..Good luck , and hope this helps with making your decision..You can always try it and if you don't like it, or have any problems then you can always stop..Take care and if you have any questions just pm me...Hugs KLynn 

    · Share on FacebookShare on Twitter
  • bre
    bre Member Posts: 89
    edited December 2008

    Thanks for your input dianna and klynn.  Am glad to hear you are doing ok klynn.  We'll see what he says on Friday but I'm reaally leaning toward trying it.  Hugs back at you!

    · Share on FacebookShare on Twitter
  • KLynn
    KLynn Member Posts: 1,407
    edited December 2008

    Good luck Friday, keep us posted...Talk to you soon Klynn

    · Share on FacebookShare on Twitter
  • bre
    bre Member Posts: 89
    edited December 2008

    Well, went to the new oncologist office today.  Waited 2 hours to spend about 5 minutes talking to him.  He's not recommending the herceptin for me since i was node negative and am 4 years out from chemo.  At the end of the conversation he told me that was a question I could have asked him over the phone.  I told him I called and asked to talk to him and was told I had to have an appt and come in and see him.  I drove 2 hours one way on a cold, snowy day for this!  grrrr  Oh well, at least my question is answered!  Thanks for listening!

    · Share on FacebookShare on Twitter
  • Jenniferz
    Jenniferz Member Posts: 541
    edited December 2008

    bre,

    I didn't get chemo or Herceptin either.  Two years ago, they didn't give it to patients with negative nodes, and tumors less than 1 cm.  And, when I asked again, I was told "no" again.  So, all I can do is hope my treatment was aggressive enough.  Since you are a four year survivor, I see a little hope that I did.

    Jennifer

    · Share on FacebookShare on Twitter
  • snowyday
    snowyday Member Posts: 1,478
    edited December 2008

    I was started on herceptin a year after my chemo was given, they didn't read a supplementary report saying they retested the tumour using FISH and I really was Her2 positive, not triple negative.  I started Herceptin the beginning of October.  I don't know if will make a difference or not. I don't have the runny nose everyone seems to get, but it's made me extremely tired and I'm bloated.  I'm having that checked this Thursday. My onc decided he didn't need to see me for the last nine weeks but I have to see him as I finally had my Muga Scan.  So have alot of questions to ask him.  As well I want to find out as much as possible about the San Antonio Breast Conf. in regards to herceptin.  I have heard that some Oncs called back lots of patients for herceptin years after treatment, but haven't heard any outcomes myself yet.  Good luck to you. 

    · Share on FacebookShare on Twitter
  • KLynn
    KLynn Member Posts: 1,407
    edited December 2008

    Hey Bre,  Well that just stinks that you dorve all the way in for 5 mins of his time...They really need to talk to their office crew at these doctors offices..You need an apppointment seems to be all they can say...I'm sure the treatment was very aggressive if he's not worried about the hercpetin.Good luck with everything..Hugs Klynn

    · Share on FacebookShare on Twitter

Categories