Cycle 1, day 8 with trial drug TRC 105

mukamom
mukamom Member Posts: 402
in Colorectal Cancer #1
Today was first infusion of the trial drug.....5.5 hrs long, taking vitals every 30 min. Fairly uneventful, altho' Robert's BP went up (expected side effect), lightheaded, and nauseous (not expected). No migraine they were half expecting. He gets another dose on Thursday (split first dose) and next week he gets a full dose plus avastin.

I so hope this does some good...pretty scary to commit to 2 months of treatment that hasn't been proven, as much as others...his CEA keeps climbing every week.

Comments

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #2
    Angela
    That's certainly a long time for an infusion but it's better to proceed cautiously.
    I really admire Robert's willingness to participate in the Trial. We need real people to help with the R&D.

    It's not for everyone. When I participated in a Clinical Trial 8 years ago, some people thought I was a guinea pig. I saw it as taking on the role of "Test Pilot".
    If no one participates, we make no progress. It's that simple...

    Please let him know how much I appreciate his participation
    and that I hope it's effective and he feels better soon.
    -phil
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    "Angelina"
    Next week sounds like it will be very interesting:)

    I hope that Robert fares well with the full dose next week...if by chance he were to have some kind of reaction, would the plan be for him to stay with the split doses? Or would that be against the trial protocol?

    As Phil mentioned above, big thanks for taking the lead on this trial...I got a chance one time to
    try something new (surgery not treatment) and it always made me feel proud to be taking the hit so that others could follow and benefit.

    Best of luck - so nice to see you again, Angie:)

    -Craig
  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #4
    Sundanceh said:

    "Angelina"
    Next week sounds like it will be very interesting:)

    I hope that Robert fares well with the full dose next week...if by chance he were to have some kind of reaction, would the plan be for him to stay with the split doses? Or would that be against the trial protocol?

    As Phil mentioned above, big thanks for taking the lead on this trial...I got a chance one time to
    try something new (surgery not treatment) and it always made me feel proud to be taking the hit so that others could follow and benefit.

    Best of luck - so nice to see you again, Angie:)

    -Craig

    Tony...
    You should feel proud for "taking the hit" as you put it.
    Everyone here wants a cure yet many are reluctant to take a chance.
    That's OK... others will step up to bat.

    What I found slightly disturbing (to me) was that Angela's post went two days
    before it was responded to and now it's fading into the bowels of posts gone bye-bye.
    An uncomfortable topic perhaps?

    Again, I hope Robert fares well with the trial. He's certainly in my thoughts as are you...
    -phil
    a.k.a Ralph
  • tommycat
    tommycat Member Posts: 790 Member
    #5
    Hi
    I too was in a clinical trial for Stage 3 rectal cancer. I was both nervous & excited about all the unknowns, but since am now currently NED, I have to say I am very grateful for the opportunity to be part of such research.
    Good luck to your hubby with his trial, and please keep us all notified on how he's doing.
    Hugs from California,
    Tommycat
  • Vickilg
    Vickilg Member Posts: 281 Member
    #6
    Interested
    Hi there... As others have mentioned, thank you so much to Robert for participating in the trial. Do you mind me asking what stage he is and it he has mets, where to? I hate that he is feeling nauseous. That is the worst feeling. Lots of gingerale and hot tea! Big hugs to you both!
  • mukamom
    mukamom Member Posts: 402
    #7
    Sundanceh said:

    "Angelina"
    Next week sounds like it will be very interesting:)

    I hope that Robert fares well with the full dose next week...if by chance he were to have some kind of reaction, would the plan be for him to stay with the split doses? Or would that be against the trial protocol?

    As Phil mentioned above, big thanks for taking the lead on this trial...I got a chance one time to
    try something new (surgery not treatment) and it always made me feel proud to be taking the hit so that others could follow and benefit.

    Best of luck - so nice to see you again, Angie:)

    -Craig

    Craig,
    It was a very hard choice to do this trial, but Roberts onc had done a study with it last year for prostate cancer, and said there were some pretty impressive results. That tipped the scale for us.
    There are not many expected side effects, since this is not a "chemo" drug, it is in the same class as avastin, though headaches and elevated BP are fairly common. The study provides Imetrix, just in case, and BP monitored during infusion, and we monitor at home.

    Will keep updates posted PRN

    Angela
  • mukamom
    mukamom Member Posts: 402
    #8
    tommycat said:

    Hi
    I too was in a clinical trial for Stage 3 rectal cancer. I was both nervous & excited about all the unknowns, but since am now currently NED, I have to say I am very grateful for the opportunity to be part of such research.
    Good luck to your hubby with his trial, and please keep us all notified on how he's doing.
    Hugs from California,
    Tommycat

    Here's to NED-ness!!
    We would like to see that again. So did the study drug work for your benefit or is it just one of those unknowns??

    Best to you in Calif!!

    Angela

    PS Robert lived in Coronado as a child-teen
  • tommycat
    tommycat Member Posts: 790 Member
    #9
    mukamom said:

    Here's to NED-ness!!
    We would like to see that again. So did the study drug work for your benefit or is it just one of those unknowns??

    Best to you in Calif!!

    Angela

    PS Robert lived in Coronado as a child-teen

    Here Here!
    Coronado is beautiful!
    The study results were published and it turns out the extra Oxypl did not have any effect, but who knows? In the long term maybe I will reap some positive benefits. There is so much that is not known about cancer's mutations.
    I'll be following your posts :)
  • janie1
    janie1 Member Posts: 753 Member
    #10
    Vickilg said:

    Interested
    Hi there... As others have mentioned, thank you so much to Robert for participating in the trial. Do you mind me asking what stage he is and it he has mets, where to? I hate that he is feeling nauseous. That is the worst feeling. Lots of gingerale and hot tea! Big hugs to you both!

    I will be thinking of you
    I will be thinking of you and praying daily for good outcomes.
    My chemo seems to not be working. I may have to join Robert and find a good trial.
    I am in Atl.
    Take care and thanks for being here.
  • tommycat
    tommycat Member Posts: 790 Member
    #11
    janie1 said:

    I will be thinking of you
    I will be thinking of you and praying daily for good outcomes.
    My chemo seems to not be working. I may have to join Robert and find a good trial.
    I am in Atl.
    Take care and thanks for being here.

    ?
    Janie1,
    What happened? Did you recently get scan that showed cancer's growth?
  • mukamom
    mukamom Member Posts: 402
    #12
    Vickilg said:

    Interested
    Hi there... As others have mentioned, thank you so much to Robert for participating in the trial. Do you mind me asking what stage he is and it he has mets, where to? I hate that he is feeling nauseous. That is the worst feeling. Lots of gingerale and hot tea! Big hugs to you both!

    Robert is Stage IV colon
    dx in 12/08...mets in his liver since day one..was Ned once, no,twice but never for more than 5 months. His nausea was short lived the other day, and they will be giving him anti-nausea with his pre-meds from now on.

    Angela
  • mukamom
    mukamom Member Posts: 402
    #13
    janie1 said:

    I will be thinking of you
    I will be thinking of you and praying daily for good outcomes.
    My chemo seems to not be working. I may have to join Robert and find a good trial.
    I am in Atl.
    Take care and thanks for being here.

    janie1
    This trial is for solid tumors...I have contact info about this trial if you want I can PM.

    ((HUGS))

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