Phase III Clinical Trial/Herceptin for DCIS

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Tabbygirl521
Tabbygirl521 Member Posts: 193
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

 Is anyone here enrolled in this? Or planning to be? It's to see if adding Herceptin to the standard slash-and-burn treatment for DCIS improves outcomes even further. It's not been used previously since outcomes tend to be so positive already. But it may be another useful tool. My onc is very pumped about it and is urging me to participate if my cancer turns out to be HER2 +.

If anyone is already participating, I'd be interested to hear your stories.

(Spudgie, please check your private messages.  Laughing)

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  • trish1966
    trish1966 Member Posts: 19
    edited May 2009

    HI~

    I am waiting for the results to come back to see if I am the HER2 + as I am highly considering if selected to try the Herceptin as well. My Dr. seemed very pumped about it a well. I am just waiting to hear back.

    I am hoping I hear something soon.

    :) 

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  • roseg
    roseg Member Posts: 3,133
    edited May 2009

    Maybe I'm conservative, but that seems like total overtreatement to me.

    Will your insurance even pay for this? Hereptin is expensive.

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  • Tabbygirl521
    Tabbygirl521 Member Posts: 193
    edited May 2009

    Well, I think for most DCIS it is overkill, but since some do get recurrences, or get hit twice (like me), I think I'm willing to participate if I can. If this becomes another useful tool, then that's good by me. Haven't decided 100% for sure if I will join; there's the worry of side effects, though doctors seem pretty convinced that Herceptin w/o accompanying chemo won't create the same problems. Still makes me cautious, though.

    I'm not sure yet about my insurance, either. That will be a factor. :)

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  • mbordo
    mbordo Member Posts: 253
    edited May 2009

    If it is for particiaption in a clinical trial, aren't your drug expenses covered by whoever is conducting the trial?  I wouldn't imagine your insurance would be billed.  At least that's how I always thought drug trials worked....

    Mary

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  • Laura3
    Laura3 Member Posts: 59
    edited May 2009

    Tabbygirl....I was wondering if you took tamoxifen after your first diagnosis?  My diagnosis is similar to yours, I had two surgeries to get a clear margin, now 7 weeks of radiation.  I do not want to take tamx and was told that a my chances of a reoccurance is low.  But the more I read the more I see that it does happen again, either in the same breast or like you in the other one.  Any advice or information you can give me would be appreciated.....

    Thanks and God Bless...Laura

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  • trish1966
    trish1966 Member Posts: 19
    edited May 2009

    I was told that if doing the clinical trial the cost of the Herceptin would be free.

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  • Tabbygirl521
    Tabbygirl521 Member Posts: 193
    edited May 2009

    Thanks, Trish, I guess I assumed I wouldn't have to pay, but realized I didn't actually know! It makes sense that we would not pay for the Herceptin. Thanks for the info.

    Laura, my cancer this time and last time was ER-/PR-, so Tamoxifen would not have been of any benefit to me. But I'll tell you, my mom had BC in 1991 which WAS ER+ and she was on Tamoxifen for 9 years (!) - which I think they don't normally recommend. I don't know any more details about her cancer, or why she was on Tamox for so long. But I will tell you she is still alive and well and has had no mets or recurrence. So...take that for what it's worth! :) Good luck with your decison.

    Angela

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  • Sharon_W
    Sharon_W Member Posts: 24
    edited July 2011

    Hi, did anyone decide to participate in the DCIS Herceptin trial?  I am new to this community.  I was diagnosed in may, had a lumpectomy and am pr-/er-.  the MO invited me to participate in the trial and I am considering.  I'd love to hear others experience deciding whether or not to participate.  Thanks!

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  • mconsiglio
    mconsiglio Member Posts: 9
    edited July 2011

    Hello everyone. I also have DCIS and have had a lumpectomy and will start radiation soon. I was asked to be in the clinical trial for Herceptin and had the tumor tested and it was positive for Her-2 protein. I have been tossing and turning trying to decide whether to participate as I am scared of the side effects. My tumor also tested 85% positive for estrogen and the tumor was grade 3 with comedo type cells. I was diagnosed 5/31/2011 with the surgery 7/6/2011 and radiation starting 8/1 or a week later if I decide to do the clinical trail. Any thoughts?

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  • tishanncg
    tishanncg Member Posts: 1
    edited October 2012

    I had the clinical trial of herceptin. It was only one dose the first day of radiation and the 3rd week of radiation and that was it. I had no problems. I was diagnosed with dcis high grade estrogen receptors were negative so no tamaxafin for me. Then my oncologist suggested the study and I was all for it. So far I just had my 2nd mamo since diagnosis and all is good. Oh I did have 2 lumpectomies (no clear margins with the first one) and 6 and a half weeks of radiation. Go for the study I say if you haven't already as I notice the date on your post is from 2011

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