HER2 positive clinical trial, Herceptin for DCIS

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Mommy-O
Mommy-O Member Posts: 3
edited June 2014 in HER2+ (Positive) Breast Cancer

I am new to these boards, and newly diagnosed. lumpectomy 12/12 showed DCIS, ADH, LDH. I was offered to do a clinical trial taking Herceptin during week 1 and 4 of RT. Has anyone tried this? I can't find anything online except what I've received from my Oncologist. My Rad Onc doesn't seem to think its necessary, but I'm 43 with nuclear grade 3, family history and HER2 3+. I want to do everything I can to never have to receive that kind of bad news ever again. I know I'm lucky yo have caught it so early (mammo), but don't really want to risk anything. Advice?

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  • Beesie
    Beesie Member Posts: 12,240
    edited February 2013

    At this point the jury is still out as to what HER2+ status means for DCIS.  There have been lots of small studies but the results have been all over the map. Most have shown that HER2+ DCIS is no different than HER2- DCIS. Some studies have indicated that HER2+ DCIS is more aggressive and/or more likely to become invasive. Other studies have indicated the opposite, that HER2+ DCIS might actually be less aggressive. So there is no clear understanding on whether having HER2+ DCIS is concerning in the same way that HER2+ IDC is concerning. 

    The clinical trial that is underway is one attempt to learn more about HER2+ DCIS, and to see if Herceptin, which is not currently approved for DCIS, provides any benefit in terms of reducing recurrence risk.  Here is information about the trial:

    Radiation Therapy With or Without Trastuzumab in Treating Women With Ductal Carcinoma In Situ Who Have Undergone Lumpectomy

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  • Jelson
    Jelson Member Posts: 1,535
    edited February 2013

    Mommy -0 - there are threads discussing this clinical trial on the DCIS board. Try using the discussion board search function which is on the upper left. I refused to participate in the trial because it would have delayed my radiation and necessitated changing radiologists. - also I am older and don't have a family history.

    Once you agree to participate, the decision whether you actually get the trastuzumab (herceptin) is determined randomly - so even if you are in the study you might not get the infusions.

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  • Mommy-O
    Mommy-O Member Posts: 3
    edited February 2013

    Thanks Jelson! I couldn't find the discussion. I was entered yesterday but haven't heard back about receiving herceptin or not yet.

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  • Mommy-O
    Mommy-O Member Posts: 3
    edited February 2013

    Thanks Beesie - 
    I have found everything possible about the study.  I would love to hear from someone who has actually tried the Herceptin to see how they faired.  I am getting cold feet because of the negative side effects of Herceptin, the lack of interest from my RO and my nervous husband and mother.  I'll take it if it means I can be cancer-free down the road.  I just want to hear how bad it was from someone who has tried it already.  I hear back from the woman at the MO office later today to see if I was chosen to receive or not in the study.  It doesn't seem to be holding up my RT.  I had my first SIM on friday, and my next one on Monday.  I start whole breast radiation on Tuesday followed by 5 years of Tamoxifen.

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  • Kad223
    Kad223 Member Posts: 1
    edited April 2014

    hi I am in they same position of you I absolutely signed up for the trial. Herceptin is Used for later stage breast cancer and is the standard of care.  From what I understand this study involves two infusions with very little side effects. The goal is to include herceptin in the standard treatment of dcis.  I unfortunately did not get the drug as it is a randomized study. But I also understand it is proven to help reduce the risk of re occurrence in breast and other cancers.  I hope if you chose to participate you get the herceptin in my research the treatment was all positive. I'm pretty upset I didn't get it as I think it's a great tool reduce the chance if re occurrence. Talk to you med oncologist I'm sure he or she can explain and set your mind at ease . Again I wish I had received the medication because I believe it's a giant step forward to a cure and such little risk with many positive results. God Bless and stay strong I always remind myself how lucky I am for catching this so early. I am 46 and understand your concerns best of luck

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