when you are dropped from a drug trial

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edie2016
edie2016 Member Posts: 3
in Head and Neck Cancer #1

Good evening:  This is my first post regarding drug trials.  My husband, who had stage four metastatic head and neck cancer, joined a phase one drug trial involving Keytruda and incye 02436 at the University of Pennsylvania Abramson Center in February 2016.  Within three weeks he was hospitalized and dropped 15-pounds during his six day stay in the University of Pennsylvania Hospital.  The drugs made him very sick and no one was concerned he had lost 15-pounds except me.  He was dropped from the trial and died on May 5,2016.  When he joined the trial he told me "this might not help me but it might help someone in the future."  What I find disappointing is that no one from the trial ever bothered to contact him after he became ill.  He was truly just another warm body who "failed" and was dropped from the study.  No one bothered to thank him for putting his life (what little he had left) on the line.  He underwent a gruesome core needle biopsy fully awake prior to the trial.  He had 14-tubes of blood taken  on the first day he entered the trial.  We wasted so much time in hospital exam rooms when we could've been enjoying our last few weeks together at home with our families.  Drug trials make drug companies rich and physcians famous but the true heroes are the participants who are never recognized or remembered.     

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  • swopoe
    swopoe Member Posts: 492
    #2
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    I am so sorry for the loss of

    I am so sorry for the loss of yiour husband. He was a hero. We will recognize him for his contribution. Thank you from me to him. <3

  • edie2016
    edie2016 Member Posts: 3
    #3
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    swopoe said:

    I am so sorry for the loss of

    I am so sorry for the loss of yiour husband. He was a hero. We will recognize him for his contribution. Thank you from me to him. <3

    appreciate your note regarding my husband

    Dear swopoe:  I appreciate the time you took to read my message regarding my husband's drug trial experience.  

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    Condolences

     

    edie2016,

     

    I am very sorry to hear this news.  Each loss is difficult.

     

    Matt

     

  • SusanUES
    SusanUES Member Posts: 125
    edited June 2016 #5
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    Yes, your husband was a saint and a hero...

    Swopoe is right.  Everyone owes a debt of gratitude to those who volunteer additional suffering so that others may benefit.  Unfortunately, we are all big lab rats...I was asked to sign a release to approve that segments of my tongue cancer be submitted for a study.  Of course I signed...but this is nothing compared to how selflessly your husband gave of himself in his final days.  I fully believe that the good you do in your time here creates karma now and in the future.  Your husband will be justly recognized and rewarded in a way we can't fully know in this life.  My sincerest condolences to you, dear.

  • kdot2003
    kdot2003 Member Posts: 143
    #6
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    I never knew

    I know next to nothing about drug trials.  Thank you for your insight and your opinions.  Thank you to your husband and others.  I'm truly sorry it didnt help your husband.

  • Josephwc
    Josephwc Member Posts: 69
    #7
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    You and your husband have my respect

    I know, as the patient, I can put a heavy burden on the ones near me. I also have often thanked those who were there for me. I can't imagine going through what your husband went through and I feel for you both. 

    Im sure the few weeks that you did participate had huge long term effects on future patients and you and your family can be proud of your contribution. Thank you so much

     

  • wmc
    wmc Member Posts: 1,804
    edited June 2016 #8
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    So sorry for your loss.

    My condolences and there are no words that can take the loss and pain away. I have found that time does not heal all wounds, but helps take some of the pain away. Your wonderful memories can help you get through this. 

    He was right, it might help someone down the road, but that doesn't excuse their behavior, and lack of caring. Please know as you read this, there have been five responds so far, but 161 have read your post and know what you both went through. He mattered. 

    Bill

  • RottiesMom
    RottiesMom Member Posts: 167
    #9
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    I am sorry

    I am so sorry for your loss.  It is very sad you were treated so poorly.  Your husand, and you for your support, are courageous, giving people who sacrificed to help others.  That will not be forgotten.  Prayers for God's comfort and strength.

  • Barbaraek
    Barbaraek Member Posts: 626
    edited June 2016 #10
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    Edie

    Thannk you for posting this important perspective. My husband is a cancer survivor and a cancer physician, and is now the chief medical officer at a comprehensive cancer center that runs many drug trials.

    I shared your post with him and we discussed how meaningful and important it would be to receive some type of acknowledgement of the sacrifices that patients who enter drug trials make. He asked me to copy your post and I know he will share it with his leadership team. Hopefully it will ensure that at his institution at least, drug trial participants receive a letter of thanks/acknowledgement when they can no longer continue in a study. 

    In all drug studies the names of the participants and much personal information is hidden from the researcher in order to avoid biases (blind studies), but there should be some way to track individuals who are dropped from studies and find a way to send a personal note.

    I am so sorry for your loss. Your husband was a brave, selfless hero.

    Barbara

  • MrsBD
    MrsBD Member Posts: 615 Member
    #11
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    I am sorry for your bad

    I am sorry for your bad experience and the loss of your husband. To join a Phase 1 trial is a selfless act. May you find peace and comfort from that knowledge. 

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited June 2016 #12
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    Prayers and Thanks

    Because of you and your husbands participation and sacrifice, others will get the help and the chance they need to fight this battle and hopefully win.  Always Grateful, Never Forgotton  Big Hugs,   Lisa

  • edie2016
    edie2016 Member Posts: 3
    edited June 2016 #13
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    CivilMatt said:

    Condolences

     

    edie2016,

     

    I am very sorry to hear this news.  Each loss is difficult.

     

    Matt

     

    thank you

    CivilMatt:  I appreciate your note.  My daughters miss their father (who adored them) and I miss my best friend every day.

    Take care and thank you.

     

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