Adjuvant Herceptin + Perjeta

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sfar
sfar Member Posts: 32

Hi to all and thanks for all of the valuable information on this site! I really need some input on my upcoming chemo treatments. My BS who is extremely knowledgeable about research and treatments clearly felt during my post-op appointment that I should be getting Herceptin + Perjeta due to my HER2 status. She said that while not typically prescribed for adjuvant treatment unless there is metastasis it has been approved for use. However, when I went to my MO she did not discuss it with me, so I brought it up. She said that it was only for neoadjuvant use. So, I (very nicely) told her what my BS had said and that she felt that it was a good treatment for me. The MO seemed slightly annoyed but said she would look into it and get back to me. Then during my Chemo Teach session the nurse said that the doctor looked into it and it hasn't been approved for adjuvant use, there is no research yet that says it would benefit me and the side effects outweigh any possible positive about it. So, I dropped it. Now I am really wondering if I am right to not push it. If it prevents recurrance, this might be my only shot at using it before that might happen. Anyone have any experience or thoughts about this? Also, how would you approach bringing this up again? It might be great if someone can tell me how to find the studies on this use of Perjeta.

Thanks for any help you can give.

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2020

    Hi sfar, and welcome to Breastcancer.org!

    It sounds like maybe this study could help:

    FDA Approves Using Perjeta Before Surgery to Treat High-Risk HER2-Positive Breast Cancer

    Let us know if we can do anything else to help and please keep us posted on how your discussions with your MO go.

    --The Mods

  • SpecialK
    SpecialK Member Posts: 16,486
    edited April 2016

    sfar - currently the addition of Perjeta to systemic treatment is only FDA approved for neoadjuvent use for early stage breast cancer, with tumors 2cm or greater, and/or node positive. Herceptin, added to a number of chemo regimens, can be used both neoadjuvently and adjuvently. There are some patients who have received Perjeta after surgery but their oncologists would have had to request permission to do this from their insurance companies as this would be considered off-label use, and potentially pursuant to larger tumors or in node positive patients - or in those who received it neoadjuvently with incomplete eradication of their tumors.

  • Runmommy
    Runmommy Member Posts: 13
    edited April 2016

    Hi sfar, I just want to let you know that I received Perjeta along with Herceptin for 1 full year, starting before surgery but completing after surgery. To give you an idea, I had AC, then started Herceptin, Perjeta and Taxol after completing AC. I had surgery once Taxol finished, and continued H+P through the following year. Not sure if this is considered neo-adjuvant and adjuvant? My oncologist felt very strongly that I should have a full year of Perjeta to get the full benefit, even though I had a complete response to chemo and no apparent node involvement (based on results from surgery). My insurance also had no issue paying for it. I started with about 2.5cm tumor (but my oncologist felt it may have been larger clinically) and a few other smaller tumors. I was treated at MSKCC in NYC.

    Just want to let you know that it can be done and you should question and fight as much as you can until you are comfortable that you are receiving the absolute best treatment. I know that these treatments are expensive and are not without side effects, but if you don't get a satisfactory answer from your doctor as to why this drug is not right for you, keep pushing! (I was diagnosed at 34 and I had no side effects from either H or P - I started training for a marathon while on these drugs.) I unfortunately don't know of particular studies to refer you to, but perhaps your BS could refer you to some? I have never posted here before, but I wanted to put in my two cents in case it's helpful. :)

  • Moderators
    Moderators Member Posts: 25,912
    edited April 2016

    Welcome to Breastcancer.org Runmommy, and thank you for taking the time to post your experience! Always helpful to others to hear!

  • rainnyc
    rainnyc Member Posts: 1,289
    edited April 2016

    Hi sfar and Runmommy--

    I also have been treated with Herceptin and Perjeta both before and after surgery, also for a tumor presentation that involved a larger and a smaller tumor. Following surgery, the pathology report after several months of Taxol and H/P was NED. My insurer has paid for it thus far. I'm not through with the year of treatment, but I know my oncologist wants to keep me on Herceptin if not Perjeta once the year is over, due to the aggressive nature of my tumor. Interestingly, I'm also at MSK, so I wonder if they are working to get Perjeta approved for adjuvant use for at least some earlier stage tumors. I've been told more than once that my treatment is off protocol, but perhaps this will eventually become protocol. Hope this helps; PM me if you have questions.

  • sfar
    sfar Member Posts: 32
    edited April 2016

    Thank you to all that responded. I did lots of research and have found out that there is a trial going on right now called Aphinity that involves the adjuvant use of Perjeta along with Herceptin for my situation. The results are expected out this year. I am starting chemo in 2 days, but will continue to pursue this. I guess I am feeling a little intimidated and I know that is a dumb. Do you know if it takes a long time to get approved for a treatment that is "off label". I am anxious to get things rolling.

  • Mommato3
    Mommato3 Member Posts: 633
    edited April 2016

    Sfar, Perjeta hasn't been FDA approved for adjuvant treatment but there are plenty of women that have received it that way. I'm one of them. I switched MOs after AC (moved out of state). When I brought it up to her she said it would be a good idea to get it. We'd submit it to insurance and see what they said. They submitted the protocol to insurance and they approved the Perjeta. No questions asked. The crazy thing...they had initially denied the Herceptin! I would be concerned if my MO wouldn't submit or consider it because the BS suggested it. It's one thing to submit it and have the insurance company deny it and another to just not submit it at all. You always have the option of trying to find another MO. You need to be comfortable with the one you have. You will potentially be seeing her for five to ten years.

  • Zoziana
    Zoziana Member Posts: 114
    edited April 2016

    Hi ladies-thank you for starting this thread. I'm in the same boat as sfar --should Perjeta be added to my treatment plan, post surgery.

    Was thought to be HER negative when diagnosed and at surgery from IHC, had BMX, but FISH came back HER positive. Herceptin and Taxol look like MO's plan (from phone call), and go in Wed to discuss but already set to start in one week.

    I've been reading all the studies and it seems to me pretty clear that Perjeta enhances Herceptin's efficacy in the period they tested, pre-surgery. As it targets something slightly different in the HER 2 protein, it makes sense it might work a bit better becauseHerceptin might be missing something. One I am relying on is from last year's American Society of Clinical Onc. (ASCO) June 2015 meeting: http://am.asco.org/questions-remain-about-optimal-treatment-her2-positive-breast-cancer

    I'm trying to find other academic articles to support this, as I'm in an HMO and will likely have to advocate as it's not on my treatment plan now (talked to infusion center today), but I have concluded it is likely the wiser choice. I also have small hypodensities on the liver that are "too small to characterize" on CT. I'd feel more comfortable with adding it.

    If anyone has any other articles, I'd appreciate links! Thanks everyone for your insights.

  • nlg826
    nlg826 Member Posts: 5
    edited April 2016

    Hi,

    I received/receiving Herceptin and Perjeta solely in the adjuvant setting. The NCCN guidelines were updates last year to allow for Perjeta in the adjuvant setting for early-stage breast cancer. My MO had no problems getting this approved. We got the approval first for 6 months, and then it was approved for another 6 months, totaling a year. This is of course in combination with Herceptin. Insurance companies are usually ok with approving medications per NCCN guidelines - doesn't just have to be FDA approved. I think the trial that will confirm the efficacy of this in the adjuvant setting is Aphinity, but I'm not certain when the results will be published. I would 100% push for Perjeta in the adjuvant setting, combined with Herceptin. My MO said the combination of the two does not increase cardiotoxicity, so I don't think there's a real downside to taking it, only potential upside. I've tolerated it very well. Let us know what happens!

  • nlg826
    nlg826 Member Posts: 5
    edited April 2016

    Forgot to post the link to the guidelines: http://www.nccn.org/patients/guidelines/recent_updates/breast_stage_i_and_ii.aspx. See where it says Page 41. I can't seem to find the full text, but I read it last year and it definitely says you can have it.

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