Perjeta use with Hepceptin in stage IA breast cancer

Katmil426
Katmil426 Member Posts: 15

I have been receiving chemo therapy since April BEFORE surgery since we were awaiting results of my genetic testing, which was all negative. I have chemo every 3 weeks for 6 total treatments before surgery. I started with Perjeta in the mix with Herceptin (because of the HER2NEU+), carboplatin, and taxotere. I had severe side effects after the first round, which the dr. though was due to the Perjeta -- unrelenting diarrhea which required 4 rounds of fluid infusions due to inabiity to keep food/liquid in my system. Perjeta was dropped from chemo and I have had side effects but not the severe diarrhea since then. Yesterday was my 4th treatment. I am now very concerned after seeing my oncologist on Thursday because she is recommending the Perjeta be added back in when I continue Herceptin, which I must receive every 3 weeks for a full year. I will also have surgery (lumpectomy or mastectomy) about a month after this first chemo treatment is finished in July/August. Perjeta is newly approved by the FDA, and I have not been able to find hardly any information about its use in someone with a breast cancer as early stage as mine. I was prepared for the year of Herceptin, the surgery and maybe radiation, and for an aromatase inhibitor due to the ER+, PR+ but I am really thrown by this recommendation for more Perjeta. Has anyone had a similar experience or recommendation with this stage of cancer. Does anyone know who in NY, MA, PA, MD might be an expert in this kind of cancer treatment. I trust my doctor to a great degree but also wonder if all of this is necessary and she has not been able to really provide me with good DATA!!

Comments

  • Moderators
    Moderators Member Posts: 25,912
    edited June 2015

    Dear Katmil, Welcome to the BCO community and the discussion boards. We are offering you a link to information on Perjeta that is found on our website. You can search other topics as well that may be of interest while you wait for some responses from our members. Perhaps you can use the search function on the blue tool bar and search for specific terms that can lead you to find some answers or you can private message those who you find with similar situations. Keep us posted and stay connected as you can. The Mods

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    Hi Katmil!

    I had four Perjeta infusions as part of my neoadjuvant (before surgery) chemo regimen. However, I was not Stage IA but Stage IIIA, and I had my Perjeta with Taxol and Herceptin.

    Yes, Perjeta is new and most of us who have received it have been Stage II or more. Personally, I don't think you will find any studies about Perjeta's impact on the survival of early stage cancer patients. In fact, since it's an expensive drug, it's surprising that your insurance is willing to pay for it, given your early stage. (It's normally recommended for women who have tumors that are two centimeters or larger.) So, I think your MO is marching to her own drummer here rather than following standard practices. You could always ask for a second opinion, if you think will give you better arguments against resuming Perjeta infusions.

    In retrospect, I'm happy I got the Perjeta because it's a powerful drug and has shown very good results overall for women who are HER2+. I should note that chemo wiped out my lump and cleared my lymph node which allowed me to have a lumpectomy rather than a mastectomy.

    I am sorry that you had such awful diarrhea with Perjeta. I had diarrhea during my 12 weeks of Taxol+Herceptin(+Perjeta, every three weeks). But, it was mild and I was able to control it with Immodium.

    Best wishes!


  • Katmil426
    Katmil426 Member Posts: 15
    edited June 2015

    ElaineThere,

    Thanks so much for your posting as it is good to hear from someone else who has had Perjeta. I assume you have continued on with the Herceptin after surgery. Have you been receiving infusions of Herceptin alone every 3 weeks? I have a friend who has been having that. How have the side effects been from just Herceptin? How about from Aromasin?

    I appreciate what you said about my MO marching to her own drummer. I do not want to discount her expertise and experience but I am very anxious about trying Perjeta again, given my first experience with it.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    Yes, I've continued on with Herceptin since surgery. I don't really experience any side effects from Herceptin alone. That may just be me, of course. I'm doing OK on Aromasin. I'm actually premenopausal, but am being put into chemical menopause via Zoladex. On Aromasin, I've had hot flashes and mood swings. My MO put me on Celexa (SSRI), and the mood swings went away. (Hot flashes, I can live with, but I'd rather not feel teary all the time.)

    There are guidelines about standard practices; one of my fellow triple positives looked up the info on Perjeta and discovered that she probably didn't get it because her tumor was small. I wish I could give you a link to those guidelines as they might give you an argument against further Perjeta. But, I'm not sure what she was looking at, exactly.

    If your MO insists on further Perjeta, you could 1) refuse to pursue that line of treatment or 2) agree to get it, with the stipulation that you go to the infusion center a few days after the Perjeta to get pumped full of IV fluids (before you become dehydrated by diarrhea). Also, some ladies just change MOs. Sometimes, our ideas about appropriate treatment clash with those of our doctors, and we need to move on to doctors who share our perspectives.

    Best wishes!

  • Katmil426
    Katmil426 Member Posts: 15
    edited June 2015

    Thanks for your speedy reply. I have found some information about Perjeta only being used in people who have tumors that >2 cm, which mine was not, even at the beginning. If you ever find out exactly which guidelines your fellow triple positive saw, I would appreciate getting the information. Best to you in all of this. My friend here has also had very few side effects from Herceptin alone, and she has been on it for more than a year already and may continue indefinitely as long as she shows no heart impact. She did get a second opinion from an expert at Dana Farber.

  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited June 2015

    Hi!

    It was the National Comprehensive Cancer Network guidelines for breast cancer. Good luck!

  • SpecialK
    SpecialK Member Posts: 16,486
    edited June 2015

    Perjeta is also only currently FDA approved for neoadjuvent use in early stage breast cancer, adjuvant use for non-metastatic tumors is subject to how cooperative your insurance company is.  Here is info from Perjeta's site:

    http://www.perjeta.com/patient/neoadjuvant

    Not sure this link will work, but you are looking for page 46/47 of the NCCN Guidelines.  It shows the appropriate chemo/Herceptin/Perjeta regimens, and duration of administration for stage I-II breast cancer.  None of them show continuing Perjeta beyond chemo, only Herceptin continues past the chemo cycles.

    http://www.nccn.org/patients/guidelines/stage_i_ii_breast/index.html#46

  • ThePrincess
    ThePrincess Member Posts: 424
    edited June 2015

    My MO is of the opinion that Perjeta mixed with Taxotere is what causes the big D - since Taxotere is so hard on your digestive lining to start with, adding Perjeta makes it worse - she feels that perjeta alone isn't that big of a D problem (should be easily controlled w/immodium).

    Hope this helps? If I were you, I'd be willing to at least give it a try w/out the taxotere. Good luck!

  • Katmil426
    Katmil426 Member Posts: 15
    edited June 2015

    My MO oncologist also seems to think the Perjeta and Taxotere together caused the major problem. I am still collecting my information and do plan to eventually get a second opinion. For the time being I am still trying to get through the neoadjuvent chemo regimen of Herpceptin, Carboplatin, and Taxotere. I have not been terribly sick with this regimen but do have enough side effects that the quality of my life has been pretty low. I guess that is what I am trying to avoid in whatever targeted treatment comes after surgery.

    Thanks for posting your opinion!

  • Katmil426
    Katmil426 Member Posts: 15
    edited June 2015

    For Special K,

    Are you saying that Perjeta might not be covered by insurance if is used adjuvantly for a cancer which is as early stage as mine? That would definitely make a difference since I can't believe how expensive all of this is and will continue to be!!

  • Katmil426
    Katmil426 Member Posts: 15
    edited June 2015

    I am planning to get a second opinion regarding the possible addition of Perjeta to Herceptin AFTER my surgery in late August or early September. A friend went to Dana Farber in Boston, which is close enough for me to consider. Does anyone know of an oncologist there who would be a good choice for a second opinion?

Categories