Update on John's (one putt) Nivolumab / Votrient Trial

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Comments

  • garym
    garym Member Posts: 1,647
    alice124 said:

    Connection?

    Doesn't that Michigan connection extend to all the Harbaugh's - Jim, John and Father Harbaugh? 

    It does...

    But Jim played at U of M Where my daughter went to school.

  • garym
    garym Member Posts: 1,647
    alice124 said:

    No technical expertise used by me!

    Mine was a simple cut and paste job. But I noticed it didn't last  too long. I'll play with it though.

    Mine too...

    Simple cut and paste, but I can't figure out why everything is there on my screen and not yours.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    test

    And the Infinite Sadness?

    Suggestion Box

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

  • garym
    garym Member Posts: 1,647
    alice124 said:

    test

    And the Infinite Sadness?

    I'll bite...

    Ahhh, the sugestion box graveyard, but how did you get it to post and without a reply button no less?

  • garym
    garym Member Posts: 1,647
    garym said:

    I'll bite...

    Ahhh, the sugestion box graveyard, but how did you get it to post and without a reply button no less?

    How about this time?

    DANCE

     

    image

  • garym
    garym Member Posts: 1,647
    garym said:

    How about this time?

    DANCE

     

    image

    Nevermind...

    Didn't even show up on mine

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    garym said:

    I'll bite...

    Ahhh, the sugestion box graveyard, but how did you get it to post and without a reply button no less?

    Magic I guess!

    "I'll bite...

    Ahhh, the sugestion box graveyard, but how did you get it to post and without a reply button no less?"

    You bit Gary, so :  I never post to that  SUGGESTION  BOX (for fear my ideas might be thought wet) I just swan off to talk to the greenkeepers - and, to answer the second part of your question, the Box is on the Buddon Course at Carnoustie and they reckon they don't need a reply button on the Box!  Cool

  • MedScanMan
    MedScanMan Member Posts: 107
    Sorry I missed this.

    Hi Alice.  You know I rarely post unless somebody asks for me to try and make sense of something for them.  I read here every day, but for some reason missed your thread.  In back channeling with David (DMIKE) he led me to this thread.  Again I'm sorry.

     

    First of all,  3 and 4mm liver nodules are routinely skipped over by technologists not looking, but should be measured by the Radiologist.  Why there was no mention of it on the previous scan I can only guess.  The radiologist doing this reading evidently compared this scan to the previous images and not just to the previous report.   The fact that he was discussing the arterial phase of the exam leaves no doubt in his findings as even without waiting, the enhanced images are somewhat delayed......and that is where you get your best abdominal imaging.   The fact that it's now half the size, well then there's the good news.  Sometimes liver cysts and liver Mets and areas of fatty liver are tough to decide on, but here even though small, it's nice that they caught it.  No excuse for the Radiologist that missed it months before.

    Wishing you and John all the best

    Jeff

  • alice124
    alice124 Member Posts: 896 Member

    Sorry I missed this.

    Hi Alice.  You know I rarely post unless somebody asks for me to try and make sense of something for them.  I read here every day, but for some reason missed your thread.  In back channeling with David (DMIKE) he led me to this thread.  Again I'm sorry.

     

    First of all,  3 and 4mm liver nodules are routinely skipped over by technologists not looking, but should be measured by the Radiologist.  Why there was no mention of it on the previous scan I can only guess.  The radiologist doing this reading evidently compared this scan to the previous images and not just to the previous report.   The fact that he was discussing the arterial phase of the exam leaves no doubt in his findings as even without waiting, the enhanced images are somewhat delayed......and that is where you get your best abdominal imaging.   The fact that it's now half the size, well then there's the good news.  Sometimes liver cysts and liver Mets and areas of fatty liver are tough to decide on, but here even though small, it's nice that they caught it.  No excuse for the Radiologist that missed it months before.

    Wishing you and John all the best

    Jeff

    Update on John's reduction & thank you to Jef

    Jeff,

    Thanks so much for your read.   You have nothing to be sorry about. We’re grateful to have someone as knowledgeable as you around to  help us understand all this gray matter.

     In retrospect,  I think we gave our technologists/radiologists a bad rap in my initial post.  The misread--I think-- stemmed from the call from his research nurse referring to” liver tumor.” In looking back I think it was her mistaken reference, not a mistake on those reading the scan. 

     Here’s the references on John’s  previous scans:

    8/1/12 – Bottom of CT supplemental read  report : NOTE:  Liver lesion in segment 6 described in clinical dictation was present on 5/2/12 and may be a hemangioma.

    10/24/12 CT Report– There is a 1 cm hemangioma  in segment 4A/4B of the liver.

    When these references were made on the above reports, no alarm bells went off for me and John as we remembered your earlier posts referring to  hemangiomas as “a good thing “ in the scheme of things. So our minds were more or less at ease that we weren’t talking about liver metastasis. From Dr. Hammers lack of concern, he apparently still believes it is a hemangioma. Does this ring true with you?

     MORE good news! John received the RECIST report this week.  It was accompanied by a note from his research nurse, “RECIST read attached - looks good. 51% decrease from baseline, which I believe is your best read yet!” 

    AND it is his best read yet. 51%  YES YES YES!!!! While we were not upset with the stability noted earlier, we’re clicking our heels on the 51%.  Thank you ALL for for your optimism, prayers and for being here.

    Here's to more tumor reduction!!!

     

    P.S.  A big thank  you to David too for flagging Jeff for me.

  • MedScanMan
    MedScanMan Member Posts: 107
    alice124 said:

    Update on John's reduction & thank you to Jef

    Jeff,

    Thanks so much for your read.   You have nothing to be sorry about. We’re grateful to have someone as knowledgeable as you around to  help us understand all this gray matter.

     In retrospect,  I think we gave our technologists/radiologists a bad rap in my initial post.  The misread--I think-- stemmed from the call from his research nurse referring to” liver tumor.” In looking back I think it was her mistaken reference, not a mistake on those reading the scan. 

     Here’s the references on John’s  previous scans:

    8/1/12 – Bottom of CT supplemental read  report : NOTE:  Liver lesion in segment 6 described in clinical dictation was present on 5/2/12 and may be a hemangioma.

    10/24/12 CT Report– There is a 1 cm hemangioma  in segment 4A/4B of the liver.

    When these references were made on the above reports, no alarm bells went off for me and John as we remembered your earlier posts referring to  hemangiomas as “a good thing “ in the scheme of things. So our minds were more or less at ease that we weren’t talking about liver metastasis. From Dr. Hammers lack of concern, he apparently still believes it is a hemangioma. Does this ring true with you?

     MORE good news! John received the RECIST report this week.  It was accompanied by a note from his research nurse, “RECIST read attached - looks good. 51% decrease from baseline, which I believe is your best read yet!” 

    AND it is his best read yet. 51%  YES YES YES!!!! While we were not upset with the stability noted earlier, we’re clicking our heels on the 51%.  Thank you ALL for for your optimism, prayers and for being here.

    Here's to more tumor reduction!!!

     

    P.S.  A big thank  you to David too for flagging Jeff for me.

    Wonderful

    So happy to read "good news".  And for sure having a 1cm anything read as a hemangioma is a good thing as well.  I'm getting ready for my follow ups now.  A week from this Tuesday I'm with the hematologist to try and figure out how to image me for my 1 year RCC follow up considering my last creatinine was 1.7.  I changed diet and water intake during that last 2 months since that blood test, to see if I might bring it down to an injectable 1.4.  We'll see.  Four weeks after that I have my 1 year follow up cystoscopy in the Uro/Onc office to check that nothing has come back in the bladder.  That 3cm carcinoma was only attached by a little stalk so they're feeling if I cysto once a year I should be fine.  Thank god that was low grade.  You think we have problems, you should read the bladder cancer threads.  Better yet…..Don’t.  I never post there, but I read.  We'll see.....back in the hands of those curious little beings called doctors...................

  • Limelife50
    Limelife50 Member Posts: 476

    Wonderful

    So happy to read "good news".  And for sure having a 1cm anything read as a hemangioma is a good thing as well.  I'm getting ready for my follow ups now.  A week from this Tuesday I'm with the hematologist to try and figure out how to image me for my 1 year RCC follow up considering my last creatinine was 1.7.  I changed diet and water intake during that last 2 months since that blood test, to see if I might bring it down to an injectable 1.4.  We'll see.  Four weeks after that I have my 1 year follow up cystoscopy in the Uro/Onc office to check that nothing has come back in the bladder.  That 3cm carcinoma was only attached by a little stalk so they're feeling if I cysto once a year I should be fine.  Thank god that was low grade.  You think we have problems, you should read the bladder cancer threads.  Better yet…..Don’t.  I never post there, but I read.  We'll see.....back in the hands of those curious little beings called doctors...................

    Hi Jeff

    I too had a low grade TCC tumor of the bladder,it was also low grade and measured about 1cm.It has been over a year doing Cystos and still all clear so now it has been decided to check twice a year for one more year.By the way i think i would prefer having a root canal verses one of those damm Cystoscopes

  • MedScanMan
    MedScanMan Member Posts: 107

    Hi Jeff

    I too had a low grade TCC tumor of the bladder,it was also low grade and measured about 1cm.It has been over a year doing Cystos and still all clear so now it has been decided to check twice a year for one more year.By the way i think i would prefer having a root canal verses one of those damm Cystoscopes

    Cysto

    Actually, the cysto didn't bother me when I was three months post op.  The doctor doing it is the same Dr. that did my partial nephrectomy and truly saved my life by deciding to check the bladder while I was under anesthesia.  He was floored when he found a 3cm tumor considering there was no gross blood in the urine.  Mostly microscopic hematuria.  Believe me; I know how lucky I am.  If you go back to my very first post, I called it "Other side of the coin".........you'll see what luck is all about.  We all get nervous though when it’s time for the yearly check.

    Jeff

     

  • alice124
    alice124 Member Posts: 896 Member

    Wonderful

    So happy to read "good news".  And for sure having a 1cm anything read as a hemangioma is a good thing as well.  I'm getting ready for my follow ups now.  A week from this Tuesday I'm with the hematologist to try and figure out how to image me for my 1 year RCC follow up considering my last creatinine was 1.7.  I changed diet and water intake during that last 2 months since that blood test, to see if I might bring it down to an injectable 1.4.  We'll see.  Four weeks after that I have my 1 year follow up cystoscopy in the Uro/Onc office to check that nothing has come back in the bladder.  That 3cm carcinoma was only attached by a little stalk so they're feeling if I cysto once a year I should be fine.  Thank god that was low grade.  You think we have problems, you should read the bladder cancer threads.  Better yet…..Don’t.  I never post there, but I read.  We'll see.....back in the hands of those curious little beings called doctors...................

    follow-up

    Good luck with follow-up and preparation for follow-up. Hopefully all the good karma you've built on this Board willl accompany you as we recycle it back to you. 

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    follow-up

    Good luck with follow-up and preparation for follow-up. Hopefully all the good karma you've built on this Board willl accompany you as we recycle it back to you. 

    foillow-up

    Agreed!

  • vtvickil
    vtvickil Member Posts: 18
    Woo Hoo

    With all the drama in our little world I completely missed this.  SOOOOO happy to hear the positive news!  Keep it coming - you are giving us all much to hope for!