TRC 105 trial 2.5 years later

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mukamom
mukamom Member Posts: 402

Robert has been recieving TRC 105 study drug since July 2012 in conjunction with avastin with some good results.  The tumors in the liver that were being tracked shrank by 30%.  The study has long been closed but they have continued to treat him since he was recieving benefit i.e. stable or no progression.

 

Last CT (he gets them every 8 weeks) showed an enlarged peritoneal lymph node, twice the size it was in June.  His CEA has continued to rise to a 5, which I know is in the "normal range", but for Robert, that is considered high.

PET is scheduled next week.

 

Robert is starting to show avastin toxicity..elevated BP and protein in the urine.  Not enough to stop tx, but enough to warrant "reassessment" when we discuss PET results.  I already have made an appt with his original oncologist if the results show progression and they stop the study drug.

So sad to read of the passing of so many and the all the new folks I see here....

 

Angela

Caregiver to Robert

Dx IV cc 12/08

Comments

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
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    Hopefully its a false alarm.

    Hopefully its a false alarm.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    Angela

    How did the PET go for. Robert?  Been thinking about you both and hoping it was a "good" PET.

    Winter Marie

  • mukamom
    mukamom Member Posts: 402
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    Angela

    How did the PET go for. Robert?  Been thinking about you both and hoping it was a "good" PET.

    Winter Marie

    No results

    until next Wed. (I hate waiting a whole week..)  His trial nurse is expecting progression. "He's had a good long run on this drug."

    And he has. I just hope there is something else since he is not a candidate for surgery.

     

    Hope you are feeling better and able to gain some weight. 

     

    Thanks,

    Angela

  • Phil64
    Phil64 Member Posts: 838 Member
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    mukamom said:

    No results

    until next Wed. (I hate waiting a whole week..)  His trial nurse is expecting progression. "He's had a good long run on this drug."

    And he has. I just hope there is something else since he is not a candidate for surgery.

     

    Hope you are feeling better and able to gain some weight. 

     

    Thanks,

    Angela

    Wishing you and Robert Peace,

    Wishing you and Robert Peace, Live, Health. Hoping for good reports and good options.

  • sdp
    sdp Member Posts: 181
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    mukamom said:

    No results

    until next Wed. (I hate waiting a whole week..)  His trial nurse is expecting progression. "He's had a good long run on this drug."

    And he has. I just hope there is something else since he is not a candidate for surgery.

     

    Hope you are feeling better and able to gain some weight. 

     

    Thanks,

    Angela

    Hi any update on the

    Hi any update on the results 

    I hope It worked for him ! And the nurse was wrong 

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    sdp said:

    Hi any update on the

    Hi any update on the results 

    I hope It worked for him ! And the nurse was wrong 

    Still with you

    Hi still here...things were going good wit both Robert and me.  Glad that trial helped I'm looking at one myself.....bout out of bullets.....remember the crown for big rob.....good times.  I got sick after that but I remember sharing a glass of crown in my barn that night...it was spiritual and I felt a connection that evening.

    a reminder to grab when you can - while you can.

    take care honey and best wishes and may we both find a path that we can walk down.

    - Ctaig

  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
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    cam

    Congratulations on your good clinical trial result.  Thanks for letting us know.  If the Avastin is too toxic, you might consider 2-3 options. First some (more) Avastin dosage reduction and second, cimetidine + IV vitamin C.  For us, CA19-9 targeted cimetidine with IV vitamin C has allowed us to control histamine generation then excess VEGF-A and avoid Avastin for 4+ years. Of course, the trial and kidney parts would complicate any post-Avastin manuever too.

    Third, we have several things to help protect her kidneys from injury, a 100 mg riboflavin tab, 60 mg P5P (active vitamin B6), 400 mg CoQ10 and less dietary sugar/simple carbs.  When I don't want to discuss supplements at length with yet another doctor, I just say/write, she takes "multiple vitamins" beyond some limit in detail, but I do keep at least one dr fully informed.

     

  • mukamom
    mukamom Member Posts: 402
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    tanstaafl said:

    cam

    Congratulations on your good clinical trial result.  Thanks for letting us know.  If the Avastin is too toxic, you might consider 2-3 options. First some (more) Avastin dosage reduction and second, cimetidine + IV vitamin C.  For us, CA19-9 targeted cimetidine with IV vitamin C has allowed us to control histamine generation then excess VEGF-A and avoid Avastin for 4+ years. Of course, the trial and kidney parts would complicate any post-Avastin manuever too.

    Third, we have several things to help protect her kidneys from injury, a 100 mg riboflavin tab, 60 mg P5P (active vitamin B6), 400 mg CoQ10 and less dietary sugar/simple carbs.  When I don't want to discuss supplements at length with yet another doctor, I just say/write, she takes "multiple vitamins" beyond some limit in detail, but I do keep at least one dr fully informed.

     

    The PET

    showed good and not so good.  The "multiple" tumors in his liver are dormant Laughing, however the suspect lymph node lit up, so there is 

    a biopsy scheduled for Dec 3.  It has to be done endoscopicaly (sp?) because of its location. If it is progression then no more trial drug.

    So no treatments until the biopsy.  

    Craig- so good to hear from you!  Been keeping you in my prayers -as with everyone.  Keep the lion close.

    Angela