Accepted... now scared

AprilandChuck
AprilandChuck Member Posts: 110
in Kidney Cancer #1

Chuck was accepted into the trial we found out at his Doctors appointment yesterday... they are rolling patients in so he will be 7 of 110 in the USA and Canada.. now we just have to wait.. for the phone call...I am not going to lie.. I am scared... Phase1 means NEW really new...Both Drugs have already been on trial and one has been approved to treat Melonoma(IPI) the other Anti PD 1 or its  fancy name Nivolumab that is awaiting FDA approval...The biggest plus is that if he has a reaction to IPI they will keep him on the Nivolumab only..so it gives him access to a drug he might not have had without the Trial untill the FDA approves it...I am hoping the benefits will out weigh the risks.. the possible side affects look pretty scarey.. I have to keep reminding myself that the side affects of the cancer are scarier.. he is all for it.. he says the end result is if it does not help him.. it gives them info that may be used down the road to help others...I know that in my head.. but in my heart I am terrifed....But all in all he is taking this as very good news.. and it is I know it is...I know we are blessed to have this chance.. and he has amazing Doctors... Will keep everyone posted.. Enjoy the spring :D Hugggssss

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Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #2
    trials

    As you know, I am a BIG nivolumab fan. Good luck chuck.

  • Mikeyswife
    Mikeyswife Member Posts: 31
    #3
    Good Luck April and Chuck

    This is so awesome.  I am sure you are scared but none the less you have an amazing opportunity ahead.  My husband is just at the beginning of his journey with no known mets yet, but with 30% sarcomatoid features and in the lymphnodes I know to be prepared so I just keep reading.  Good luck!  I will be praying for excellent results! 

  • angec
    angec Member Posts: 924 Member
    #4
    Yes April, you two are VERY

    Yes April, you two are VERY fortunate to have the opportunity of these trials.  These are the two most sort after trials that most people are looking for and promise the best results.  Take one day at a time and keep praying, meditating and keep loving life! I have a good feeling about this!!  All my best to you both!!!  

  • garym
    garym Member Posts: 1,647
    #5
    OK to be scared...

    A and C,

    If you weren't scared we'd be worried about you.  Chuck has a very good and positive attitude, that's half the battle, I'm with Ang, I have a good feeling about this.  Go into it with expectations of a great outcome and a comittment to do whatever is necessary, I like the phrase "ATTACK WITH EXTREME PREJUDICE" kick cancer's butt!  Follow fox's lead.

    Good luck and Godspeed,

    Gary

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #6
    garym said:

    OK to be scared...

    A and C,

    If you weren't scared we'd be worried about you.  Chuck has a very good and positive attitude, that's half the battle, I'm with Ang, I have a good feeling about this.  Go into it with expectations of a great outcome and a comittment to do whatever is necessary, I like the phrase "ATTACK WITH EXTREME PREJUDICE" kick cancer's butt!  Follow fox's lead.

    Good luck and Godspeed,

    Gary

    Confusion

    Gary, you're getting a bit confused - it's dogs that have leads, foxes run free!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #7
    angec said:

    Yes April, you two are VERY

    Yes April, you two are VERY fortunate to have the opportunity of these trials.  These are the two most sort after trials that most people are looking for and promise the best results.  Take one day at a time and keep praying, meditating and keep loving life! I have a good feeling about this!!  All my best to you both!!!  

    Good luck Chuck

    This is a trial many folks would give their right arm to get into - it's great news you've made it into it and right at the beginning. 

    Don't be anxious because it's a phase I trial.  They will be monitoring very closely when what they're trying to establish is the posological parameters or, to put it more colloquially : just how much ipi can a good Chuck chug if a good Chuck can chug ipi. 

  • garym
    garym Member Posts: 1,647
    #8
    Texas_wedge said:

    Confusion

    Gary, you're getting a bit confused - it's dogs that have leads, foxes run free!

    Ahhhhhhhhh...

    but can foxes outrun the hounds?

  • AprilandChuck
    AprilandChuck Member Posts: 110
    #9
    Texas_wedge said:

    Good luck Chuck

    This is a trial many folks would give their right arm to get into - it's great news you've made it into it and right at the beginning. 

    Don't be anxious because it's a phase I trial.  They will be monitoring very closely when what they're trying to establish is the posological parameters or, to put it more colloquially : just how much ipi can a good Chuck chug if a good Chuck can chug ipi. 

    LOL

    I think you and Chuck and Fox would get along great.. if attitude brings healing you all WIN big!! I know as I have said before we are blessed by the Doctors we ended up with.. they are pretty amazing... and I am always Thankful we ended up where we did!! My answer to fear is to gather knowledge because like I tell the Doctors all the time.. "Tell us everything... bad things grow in the dark.. when you shed light you can gather the knowledge needed to deal" But I have to say Histology, Morphology and Grading still kick my butt.... I had to admitt to being scared because if not... then I could not deal with it... Chuck and I have talked about it.. a lot...that helps!!!Plus I have the book on the treatment.. by the time it starts I will have all the possible side affects memorized and down cold so I know what to watch for.... no matter how small it may seem... Our Daughter(a Nurse) is buying her dad a blood pressure monitor and a glucose meter...in  her words those are things we can watch at home lol...We go armed with Hope, Faith, and a little modern technology...and knowledge that we are in great hands Doctor wise!! As we told our Girls Softball Team when we coached...(and we have used it as our mantra since Chuck got sick) no one plays(or in this case heals alone) alone!! GO TEAM!!! Hugggss

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #10
    garym said:

    Ahhhhhhhhh...

    but can foxes outrun the hounds?

    Sure they can

    but the important thing is that OUR Fox can outrun cancer!!

  • garym
    garym Member Posts: 1,647
    #11
    Texas_wedge said:

    Sure they can

    but the important thing is that OUR Fox can outrun cancer!!

    AMEN TO THAT!!!

    And the pack he runs with is growing and gaining momentum!!

  • alice124
    alice124 Member Posts: 896 Member
    #12
    Fantastic news April. I

    Fantastic news April. I understand you may be a little worried, but replace that concern with exhileration.  The chatter on this trial is postive and--like Tex says--he will be very closely monitored. I want everyone on this board to have his/her own chapter in the upcoming book, WINNING THE WAR ON KIDNEY CANCER. Go Chuck!

  • Limelife50
    Limelife50 Member Posts: 476
    #13
    Why did the chicken cross the road

    Ok its late and i cant sleep this happens to me alot,April i think Chuck being accepted into this trial is a blessing so try not to worry and adopt an attitude of looking forward to the trial.

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #14
    Limelife50 said:

    Why did the chicken cross the road

    Ok its late and i cant sleep this happens to me alot,April i think Chuck being accepted into this trial is a blessing so try not to worry and adopt an attitude of looking forward to the trial.

    Why did the chicken cross the road?

    Mike, why do you not sleep well - anxiety, pain, indigestion, troubling dreams?  [I know how you feel - I woke from pain last night, not unknown in the last couple of weeks.]  When you do, do remember that the idea of an unbroken night's sleep of 8 hours is a relatively new cultural concept.  There's good historical evidence that our forebears more often regarded it as natural to sleep for a few hours and, if then waking, to get up and do something for a bit and then go back to bed and sleep some more. So try not to get hung up on it - it's amazing how comfortable it can be to do that and wake up feeling fully refreshed and fine for the following day.  (This is assuming that there isn't some serious underlying medical cause and you seem to be doing well so I doubt that is the case.)

    Next time you're having trouble sleeping, have a look at a good "Why did the chicken cross the road?" site.  It's fun and impressive that a student of maths and computing could compile a list of fun answers that reflect so much appreciation of literary stylistics - he not only captures the iconic pronouncements of the famous figures he 'quotes' but puts words in their mouths that in some cases catch their characteristic speech patterns very well:

    Why did the chicken cross the road?

    http://www.madore.org/~david/misc/chicken.html

  • AprilandChuck
    AprilandChuck Member Posts: 110
    #15
    Limelife50 said:

    Why did the chicken cross the road

    Ok its late and i cant sleep this happens to me alot,April i think Chuck being accepted into this trial is a blessing so try not to worry and adopt an attitude of looking forward to the trial.

    :D

    I am looking forward to the trial :D and we are very very thankful that he got in.. I think I have been terrified since he was diagnosed...even though I try not to show it to him and our daughters sometimes the fear creeps in.. But there is not a day I don't feel blessed and thankful.. for our doctors, the support of our friends and family.. and that this board is here.. to put me back on track :D But mostly I feel blessed that he is still here and we can enjoy the time we have together...God willing we will have years and years left together.. in 3 years we will be married 30 years... I am shooting for 50 lol :D And Mike.. from what I have observed with Chuck... the sleep thing happens.. even when you are feeling good... whether it's the cancer or underlieing worry...I don't have a clue.. but chill and I suggest that you try Texas idea...Our brain deals with things.. even when we don't think it is....I am from a family of what I affectionatly call Vampires we are night creatures lol...Chuck never has been.. but lately he is becoming one :D I am looking forward to a time when he embraces it!! Hugggssss

  • cran1
    cran1 Member Posts: 139
    #16
    Good luck Chuck.

    Good luck Chuck.

  • Eims
    Eims Member Posts: 423
    #17
    The luck of the Irish is

    The luck of the Irish is being sent your way Chuck in bucketloads.  

    Eims x

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #18
    Eims said:

    The luck of the Irish is

    The luck of the Irish is being sent your way Chuck in bucketloads.  

    Eims x

    Shocked!

    You do know that "the luck of the Irish" means BAD luck, surely?!

  • Eims
    Eims Member Posts: 423
    #19
    Texas_wedge said:

    Shocked!

    You do know that "the luck of the Irish" means BAD luck, surely?!

    Texas,
    Did you not know we

    Texas,

    Did you not know we are the luckiest nation in the world??!  We survived the famine, many wars, invasions and loads of recessions and we are still here so there has to be lots of luck involved in all that drama and history ;-)

    Eims x

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #20
    Eims said:

    Texas,
    Did you not know we

    Texas,

    Did you not know we are the luckiest nation in the world??!  We survived the famine, many wars, invasions and loads of recessions and we are still here so there has to be lots of luck involved in all that drama and history ;-)

    Eims x

    Fascinating topic

    The explanation of the phrase I've found most convincing is that it was an ironic comment made by American Irish immigrants about themselves when they were badly discriminated against in the jobs market etc and so was said wryly, much as we might say "Just my luck!".   It was self-deprecating humour, very much like the same vein in Jewish humour, from people also very much discriminated against. There are considerable degrees of similarity since these are probably the two most universally appreciated sources of humour (Jewish and Irish) from two peoples who have suffered the same fate of having frequently triumphed over adversity and suffered from diatribes about their "luck" because of sour grapes, rather than acknowledge their character and hard work in succeeding.

    One comment from an Irish blogger I thought insightful is

    If you've ever thought the "luck of the Irish" makes absolutely no sense — we're talking about a country where a lousy season for root vegetables caused widespread famine and mass emigration — it's because it doesn't. It's an ironic statement, and if anything the Irish are known far better for their sense of irony than their inherent luck.

    Here's a different take:

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  • Eims
    Eims Member Posts: 423
    #21
    Texas_wedge said:

    Fascinating topic

    The explanation of the phrase I've found most convincing is that it was an ironic comment made by American Irish immigrants about themselves when they were badly discriminated against in the jobs market etc and so was said wryly, much as we might say "Just my luck!".   It was self-deprecating humour, very much like the same vein in Jewish humour, from people also very much discriminated against. There are considerable degrees of similarity since these are probably the two most universally appreciated sources of humour (Jewish and Irish) from two peoples who have suffered the same fate of having frequently triumphed over adversity and suffered from diatribes about their "luck" because of sour grapes, rather than acknowledge their character and hard work in succeeding.

    One comment from an Irish blogger I thought insightful is

    If you've ever thought the "luck of the Irish" makes absolutely no sense — we're talking about a country where a lousy season for root vegetables caused widespread famine and mass emigration — it's because it doesn't. It's an ironic statement, and if anything the Irish are known far better for their sense of irony than their inherent luck.

    Here's a different take:

    Luck of the Irish

    The phrase luck of the Irish is commonly thought to mean “extreme good fortune.” However, according to Edward T. O’Donnell, an Associate Professor of History at Holy Cross College and author of 1001 Things Everyone Should Know About Irish American History, the term has not an Irish origin but “a happier, if not altogether positive,” American one.

        "During the gold and silver rush years in the second half of the 19th century, a number of the most famous and successful miners were of Irish and Irish American birth. . . .Over time this association of the Irish with mining fortunes led to the expression 'luck of the Irish.' Of course, it carried with it a certain tone of derision, as if to say, only by sheer luck, as opposed to brains, could these fools succeed."

    1. Luck of the Irish

    The phrase luck of the Irish is commonly thought to mean “extreme good fortune.” However, according to Edward T. O’Donnell, an Associate Professor of History at Holy Cross College and author of 1001 Things Everyone Should Know About Irish American History, the term has not an Irish origin but “a happier, if not altogether positive,” American one.

        "During the gold and silver rush years in the second half of the 19th century, a number of the most famous and successful miners were of Irish and Irish American birth. . . .Over time this association of the Irish with mining fortunes led to the expression 'luck of the Irish.' Of course, it carried with it a certain tone of derision, as if to say, only by sheer luck, as opposed to brains, could these fools succeed."

    It certainly seems to be a controversial topic and a fair conspectus of views can be founh at this link, maybe favouring the negative connotations:

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