Possible Clinical Trial at NIH/NCI

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Betsydoglover
Betsydoglover Member Posts: 1,248 Member
edited March 2014 in Colorectal Cancer #1
Hi all -

This week I have been talking to docs / nurses involved in a clinical trial at NCI.

The trial involves radio frequency ablation of liver mets but with a twist. They inject you with doxorubicin (standard chemo drug used for breast and other cancers). The drug molecules, however, are "micro-encapsulated" with liposomes which are heat activated. The theory is that the drug is not activated until exposed to heat (so basically it gets to the liver via systemic circulation) and then is activated by the RFA heat - an experimental attempt to kill the remaining few cells and prevent a recurrance of the liver met (which occurs about 40% of the time after RFA.) So this is scary but also interesting.

In the next two weeks I expect to have appointments at NIH for various scans (including some of I have never heard of). They will evaluate me for inclusion in this protocol. Very cutting edge. I've been very impressed with the docs / nurses I have spoken with so far. One scary thing. The MD I spoke with indicated that they have very sophisticated imaging available - no surprise. He said that some potential patients do not want to have the required imaging because it may well show something that standard PET/CT imaging doesn't reveal! Yikes! But, still I feel turning down this potential opportunity on that basis alone is just putting my head in the sand. So I am pushing forward with scheduling all sorts of imaging (including a MUGA scan (heart) - looked that one up, never heard of it before. If my scans look acceptable to the study then I will have a day-long appointment with NIH after which this RFA procedure will be scheduled. Lots of follow-up, though just the usual you would have anyway (but no cost - meaning no fights with the insurance co!.)

And, IF my NIH scans show nothing, I suppose I won't get included in the study. But, on the other hand, that may REALLY mean there is "no evidence of disease"! A big old dilemma here - but meanwhile my husband has back surgery tomorrow, so I worry about that for tomorrow and focus on this new world next week!

I'll keep you posted. On the one hand I am positive as it might represent a "cure" and face it, that is not typically a term used for stage IV crc. RFA is "common" these days and doxorubicin is given to breast cancer patients for 6 cycles all the time - this study "just" involves one encapsulated injection that - if it works as advertised - will only attack the liver and will be at a much smaller dose than a bc patient recieves typically in one chemo session.

Wish me luck. And anyone else with NIH experience (Claudia????), please let me know.

Betsy

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  • debralla
    debralla Member Posts: 203 Member
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    Best of luck Besty for you and your husband . Please keep us all updated . I too have liver mets . So My hopes and of couse prayers are with you !!!...TAKE CARE AND GOD BLESS....DEBRA...
  • KathiM
    KathiM Member Posts: 8,028 Member
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    Betsy, How wonderful, fabulous, exciting for you. Brave, too! Scans (especially anything with the word "scope" in it) just makes my heart flutter. But its heros like you that will further science so we can get a real handle on this stuff!
    Lots of hugs, prayers.
    Kathi
  • foxy
    foxy Member Posts: 188 Member
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    All the best to you, my thoughts and prayers are with you---- Virginia.
  • Moesimo
    Moesimo Member Posts: 1,072 Member
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    Betsy,

    good luck and all the best with the trial.

    Maureen
  • ccartwri
    ccartwri Member Posts: 82
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    Betsy
    This is great!!!! I love NIH. The world outside a clinical trial seems cold and dark in comparison. Is Steve Libutti the PI on the study? He is my PI and also does much liver work.
    I think you should totally go for it. I am VERY interested in these advanced imaging they have too. Would like to hear more about it when you know more.
    Please email me or call me anytime to discuss. Just email the link that is with my name.
    I would love to meet up sometime too.
    claudia
  • Betsydoglover
    Betsydoglover Member Posts: 1,248 Member
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    ccartwri said:

    Betsy
    This is great!!!! I love NIH. The world outside a clinical trial seems cold and dark in comparison. Is Steve Libutti the PI on the study? He is my PI and also does much liver work.
    I think you should totally go for it. I am VERY interested in these advanced imaging they have too. Would like to hear more about it when you know more.
    Please email me or call me anytime to discuss. Just email the link that is with my name.
    I would love to meet up sometime too.
    claudia

    Hi Claudia -

    Thanks for the encouragement. This work all comes under Libutti - my onc has been talking to me about him since last june when I was diagnosed. She is involved with several of his clinical trials. The actual PI is Dr. Brad Wood who is in Interventional Radiology and also surgery. But, he is associated with Libutti.

    I'll let you know how it goes.

    P.S. Catalina is adorable! And I loved the web site.

    Betsy
  • terril
    terril Member Posts: 296
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    Hi Claudia -

    Thanks for the encouragement. This work all comes under Libutti - my onc has been talking to me about him since last june when I was diagnosed. She is involved with several of his clinical trials. The actual PI is Dr. Brad Wood who is in Interventional Radiology and also surgery. But, he is associated with Libutti.

    I'll let you know how it goes.

    P.S. Catalina is adorable! And I loved the web site.

    Betsy

    This soiunds like great news, Betsy!! Wow!! Would't this be incredible!!! Good luck. My prayers and thoughts are with you. Terri