Topic: Only Navelbine and Herception For Stage 1, HER2 Positive?

Options
keepsake
keepsake Member Posts: 59
edited June 2017 in HER2+ (Positive) Breast Cancer

Hi everyone. I posted earlier today in the Triple Positive thread about this topic and thought I'd try here to see if there may be more responses.

I recently completely my surgery and next will begin adjuvant chemo. I had a small, Stage 1, HER2 positive tumor. My MO recommends a regimen of Navelbine and Herceptin, which worked well for patients with small HER2 positive tumors who participated in a one-arm trial at Dana Farber, as I understand. However, in reading many threads on these boards, I have not found posts from other women with small, Stage 1, HER2 positive tumors who had only Navelbine chemo and Herceptin. It seems many who are similar to me have been treated with Taxol and Herceptin instead. My MO said Navelbine has also been used with both primary lung cancers and very successfully with Stage IV breast cancer patients.

Have any of you with small, early stage HER2 positive breast tumors had only Navelbine and Herceptin for your chemo and targeted treatment regimen? Because it seems to be the less common treatment, compared to Taxol and Herceptin, I have some concern about going this route. I have heard Navelbine described as a "lighter" chemo SE-wise, which is great but not my main concern. I want to max my odds of beating this beast.

What do you think about this regimen?

P.S. My MO, whom I like and feel very comfortable with, and my hospital are highly respected.

Thanks.


· Share on FacebookShare on Twitter

Comments

  • wabals
    wabals Member Posts: 242
    edited December 2015

    I am in a clinical trial out of Dana Farber for small stage 1 her2+ tumors. One arm gets taxol/herceptin. The other, which I am in gets tdm1. It is used for stage 4. Very few side effects so far for me. Look into it. It is called the ATEMPT trial and all major cancer centers are participating. And no hair loss!!! It is a combo of herceptin and another chemo drug. Targeted therapy

    · Share on FacebookShare on Twitter
  • keepsake
    keepsake Member Posts: 59
    edited June 2017

    Thanks so much for the info kayb & wabals! Also, thanks for the link, kayb! I mentioned the ATEMPT trial to my MO, who doesn't favor TDM1 for me. Unfortunately, I now don't remember the exact reason, but understood her rationale at the time. (So much info to gather and decisions we all face dealing with this disease. Sometimes it is overwhelming.) If I'm going to do chemo, of course, the "lighter" version is appealing, but, ultimately, I want whichever regimen I can tolerate that has the most scientific validity for preventing a recurrence for patients like us. One problem we face is potentially being over-treated. Unlike the HER2 negative patients, we don't have a test like the Oncotype Dx to determine percentage-wise whether we're likely to benefit from chemo or not.

    · Share on FacebookShare on Twitter
  • wabals
    wabals Member Posts: 242
    edited December 2015

    KeepsakeActually tdm1 has proven effective for stage 4. So why would your doctor not like it for you? What hospital is she affiliated with? My doc is at Johns Hopkins, #1 hospital in the country. I would get a 2nd opinion at an academic cancer Ctr. Looking at the navelbine trial, looks like it only lasted for 12weeks due to lack of participants. So where is her data

    · Share on FacebookShare on Twitter
  • keepsake
    keepsake Member Posts: 59
    edited June 2017

    wabals, my medical team is at a NCI-designated cancer center. Top-notch docs.

    As we all know, even the best MDs may differ among themselves regarding how they would treat a particular patient, and granted, my knowledge in this area is, at best, extremely limited to say the least, which scares me. Although, I am committed to learning as much as possible in order to make informed decisions about my care and to advocate for myself. Getting feedback from other women fighting this battle, like you, is invaluable. It helps me to process my experience better and to clarify my thinking. I'm so grateful to you all and that these forums exist. I hope you all keep challenging me with your questions and enlighten me with the understanding that's only gained by walking through this hell fire.

    To answer your questions, perhaps my MO has determined it most likely that I, personally, for whatever reason, will not be able to do as well as other patients with the standard regimen or even be able to complete it, so she proposed the best alternative. Same for the tdm1 regimen. I need to ask her this directly. Actually, she may have explained how she decided which treatment plan best suits me, and I have forgotten the details now. (Hopefully, I'm not the only one with this experience.) She pleasantly answered all the questions I threw at her to my satisfaction, and then some, at my last appointment. I need to bring a notebook with me next time because I find now that I cannot remember all the details of the topics we discussed.

    From the help I'm getting from you all here, I see I need to explore this matter more with her at my next appointment, and take notes, so that I feel more assured before moving forward.

    Thanks for your input!

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2015

    keepsake - you might ask your doc if you can record your appointment on your phone or a little handheld recorder.  That way you can go back and listen to what was actually said.  I have found that if you are trying to write and talk you will miss something.

    · Share on FacebookShare on Twitter
  • wabals
    wabals Member Posts: 242
    edited December 2015

    Actually kayb it was pretty much a no brainier for me. As a nurse practitioner I am familiar with research and trials. The data on tdm1 was that it was at least equal to standard treatment for stage 4 patients. With much less toxicity and side effects. True there is no data for stage 1, but logical conclusions can be drawn. Think about it. Would the most prestigious centers in the country be putting patients at risk? Plus the trial is now in its 3rd year so if there was any data coming out showing that it was not working, the trial would be stopped. My oncologist practically did cartwheels when I was randomized to tdm1! Hopkins cured my husband of stage 4 bile duct cancer 8 years ago. I trust them and you are welcome! Soon this will probably be standard of care. Oh and also in this trial only 25% were randomized to the taxol/herceptin arm while 75% were randomized to tdm1. That shows a lot of confidence in the drug in my opinion

    · Share on FacebookShare on Twitter
  • SpecialK
    SpecialK Member Posts: 16,486
    edited December 2015

    kayb - Lol!  Great minds...

    · Share on FacebookShare on Twitter
  • keepsake
    keepsake Member Posts: 59
    edited June 2017

    Recording the appointment is a great idea

    · Share on FacebookShare on Twitter
  • Nibaum
    Nibaum Member Posts: 23
    edited February 2016

    Hi Keepsake and any BC sisters who have some perspective on this,

    I have been reading and learning from all the helpful and generous posters.  But I haven't been able to find anyone with a similar profile to mine.  Then Keepsake's thread of her non-standard treatment of navelbine and Herceptin caught my attention.   My unusual low grade 1 (mitotic 1) triple positive bc (ER+100 %, PR+100%, HER2+ FISH dual probe 2.8) is making me question the standard treatment for HER2+ bc.  I have no health issues that would prevent me from getting the standard chemo/Herceptin treatment but I am questioning the risks to benefits ratio.

    I already had a 2nd path review (at a nearby NCI university hospital) and a FISH retest of HER  is still pending.   This was recommended when I had a second opinion with a bc specialist there since the grade 1, HR+, and HER2+ is a rare profile.   My  treating MO had not noticed this initially but has since requested an Oncotype DX, which would include an alternate HER2 score.   But not sure if my insurance will authorize it due to the initial HER2+ finding.  I am coming up to 6 weeks from surgery so I starting to feel anxious about what the right treatment for me really is.  My chemo treatment (Taxol/Herceptin) was supposed to start 2/9/16 but don't think I can keep that schedule with so many unanswered questions.

    At the same time, I am glad I have this time to more research, especially on my low mitotic rate.  Ki67 is not used much by MOs in my area.  Even the NCI MO said that ki67 cannot be revalidated or something to that effect and should not be used to undermine the mitotic index.  I found several studies that mitotic index is a very key prognostic indicator, unfortunately there were no tie-ins to HER2+ cases.  Probably because it would be rare.  While it's great to have a very slow growing tumor, now I am questioning if chemo would have any effect on it.

    I doubt the 2nd FISH test and the Oncotype DX will easily overturn the initial HER2+.  At the most, it will come back equivocal, and I will have to treat it as HER2+.   But I think Taxol/Herceptin is overtreatment for my profile and may not even make much of a difference in DFS/OS, especially after 5 yrs.   I  would prefer Herceptin only with hormone therapy, but don't think either MOs will endorse that plan.  When I saw Keepsake's treatment plan, I thought that might be a good compromise for me.   I have emailed the NCI MO that question and will probably hear from her early next week when the FISH results are in.  I will also talk to my treating MO about it at my next appt. 

    Keepsake - Did your MO ever reference the Montreal study that kayb posted above?    From a couple of other articles I read, the doctors in that hospital really believe that Navelbine/Herceptin is effective for a select group of early BC patients.   But even if my MO agrees, I am not sure my insurance co. will authorize it since it is more expensive and is not in the NCNN guidelines.  Did you have any issues with ins. coverage?  Finally, are you doing the 12 weekly Navelbine/ Herceptin (DF trial schedule) or 6 - 8 cycles every 21 or 28 days (Montreal study)?   The DF trial was for neo-adjuvant treatment though. 

    Thanks in advance for any advice you can give me.  















    · Share on FacebookShare on Twitter
  • keepsake
    keepsake Member Posts: 59
    edited June 2017

    Hi Nibaum! I'll be happy to send you a PM

    · Share on FacebookShare on Twitter

Categories