A new thread, a new chance, and I hope a new quality of life. Goodbye MPDL3280A. I sure wont miss

pjune127
pjune127 Member Posts: 127
in Kidney Cancer #1

 

We are never ever ever EVER getting back together!!

 

When I think about the quality of my life over the past 2-3 weeks, I understand giving up.  In fact if MDPL hadn't broken up with me. I would have broken up with it!  I was reduced to a sleeping princess (escaping the twisted reality that had become MY reality) and a babbling idiot speaking in tongues even I didn't understand, and an awakeness that was puctuated with falling down, hearing strange noises and seeing a powerpoint presentation of my life in my head.  Sound like fun?  Trust me.  I had the doctors' attention pretty quickly.  First was the revelation that the medicine had skyrocketed my calcium to the point of hallucinations.  And that in turn had really screwed with my eating and my RBC.  In reaction, I had a zometa infusion on Wednedesday and that really seemed to help.  Eating has also really seemed to sharpen my focus.  I had lost way too much weight and eating had become my lowest priority  (WAAAY below standing up without fallling down!)

 

So I had the scans yesterday.  While the scans showed a little stability there was too much growth for the equation (for those of you who know what I mean.)  And in addition, the side effects were having a tumbing effect.  In other words, the medicine wasn't really helping me enough to continue to slowing kill myself with the side effects.  The numbers of my blood work probably look more like that of a developing vertebrate than a homo sapien....Perhaps that is somewhat of an exaggeration,, but priority ONE is to get me back "in Whack" for future viewings!  LOL

 

So how am I?  I am actually relieved that this merrygoround has ground to a halt, and I am still left with a plethora of choices with which to treat myself.  I mean...I can be back to votrient if I want to!  Or I can try another clinical trial in Gay Paree.  The door is open and I'm looking for another beau!  (Must like small scrappy women with a good sense of humor.)  Seriously, I can only be who I am, and that is a positive force, a person who REFUSES to cash it in, and a fighter who has been known to fight dirty.  (Go with that one....hmmmm)

 

In one teeeeeeeny tiiiiiny part of my heart I do feel as though I have let the collective team down, but fear not!!!  Paula is going to try to mop the floor with rcc or going to die trying.

 

I love you and you all are still part of my fight.

 

Paula XO

PS...forgot to tell you all.  Getting a procrit shot Monday.  Welcome Red Blood Cells!

 

 

Comments

  • todd121
    todd121 Member Posts: 1,448 Member
    #2
    Thanks for your post

    Paula,

    I'm a newbie here, but I want to thank you for sharing. Honestly, I'm a bit intimidated to be so new and post a reply. In fact, I kept re-writing my sentences and almost deleted my post. I'm encouraged to see you fighting this damn rcc, and it's a major part of why I keep reading this board. I wish you the very best and hope you stabilize quickly now that you've stopped taking it.

    My grandmother suffered from a form of leukemia in her later years and was taking procrit for several years to keep her blood count normal. It worked wonders for her.

    Best wishes to you.

    Todd

  • pjune127
    pjune127 Member Posts: 127
    #3
    todd121 said:

    Thanks for your post

    Paula,

    I'm a newbie here, but I want to thank you for sharing. Honestly, I'm a bit intimidated to be so new and post a reply. In fact, I kept re-writing my sentences and almost deleted my post. I'm encouraged to see you fighting this damn rcc, and it's a major part of why I keep reading this board. I wish you the very best and hope you stabilize quickly now that you've stopped taking it.

    My grandmother suffered from a form of leukemia in her later years and was taking procrit for several years to keep her blood count normal. It worked wonders for her.

    Best wishes to you.

    Todd

    Thanks Todd.

    The beauty of this board is that everyone is always welcome and even a poke from a newbie telling me you hope I feel better is a remarkable pat on the back.  I have had a 2 year "ride"starting with diagnosis in May 2011. Had about 3 months of recuperation, then about 9 months of sutent, about 3 months of Inlyta, and about 12 weeks on a clinical trial.  Always ask for information.  Surely one of has been there and done that.  And all of us are willing to share.  Welcome aboard Todd.  I am always here for you. 

  • alice124
    alice124 Member Posts: 896 Member
    #4
    Beware the Underdog!

    Photo

    Am watching our Baltimore Ravens fight the favored Denver Broncos as I type this  and am cheering for our hometown purple and black. Don't know what the game outcome will be as I write this, but I'm confident the Ravens will fight just as I know you will fight. When I see this poster Paula, I think of you because there's no quit in you, just one of a boat load of admirable traits. You're an inspiration to us all. Love that smile that never fades no matter what.  On to next battle. . . We're with you.

     

  • I am alive
    I am alive Member Posts: 315
    #5
    pjune127 said:

    Thanks Todd.

    The beauty of this board is that everyone is always welcome and even a poke from a newbie telling me you hope I feel better is a remarkable pat on the back.  I have had a 2 year "ride"starting with diagnosis in May 2011. Had about 3 months of recuperation, then about 9 months of sutent, about 3 months of Inlyta, and about 12 weeks on a clinical trial.  Always ask for information.  Surely one of has been there and done that.  And all of us are willing to share.  Welcome aboard Todd.  I am always here for you. 

    You sound absolutely relieved!

    Now I've got that Taylor Swift song stuck in my head. Great lede! Great take on the whole experience. Well, you can't say you didn't give it your all. Your description of these past weeks was fascinating (in a horror film kind oF way), but also edifying. If I start seeing my life as a power point presentation I'll know to dial 911! 

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #6
    alice124 said:

    Beware the Underdog!

    Photo

    Am watching our Baltimore Ravens fight the favored Denver Broncos as I type this  and am cheering for our hometown purple and black. Don't know what the game outcome will be as I write this, but I'm confident the Ravens will fight just as I know you will fight. When I see this poster Paula, I think of you because there's no quit in you, just one of a boat load of admirable traits. You're an inspiration to us all. Love that smile that never fades no matter what.  On to next battle. . . We're with you.

     

    Oh, Alice, you show-off!

    But I'm right with you about Paula.

  • Limelife50
    Limelife50 Member Posts: 476
    #7
    pjune127 said:

    Thanks Todd.

    The beauty of this board is that everyone is always welcome and even a poke from a newbie telling me you hope I feel better is a remarkable pat on the back.  I have had a 2 year "ride"starting with diagnosis in May 2011. Had about 3 months of recuperation, then about 9 months of sutent, about 3 months of Inlyta, and about 12 weeks on a clinical trial.  Always ask for information.  Surely one of has been there and done that.  And all of us are willing to share.  Welcome aboard Todd.  I am always here for you. 

    Hi Paula

    Sorry for the hell you just went through but at least you gave it your best shot and like you said there are other options.

  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    Texas_wedge said:

    Oh, Alice, you show-off!

    But I'm right with you about Paula.

    next phase

    In many ways I am speechless. Crying is premature. I am so sorry that the pdl is worse than the disease. But going through what you were experiencing was not a good option. I wish they had given you a lower dose than they did. So what are we going to do? Right now, let your system clean out and once you return to a more normal state we'll figure it out. The one constant you can count on is our (especially my) support on whatever your next decision. I love you Paula. Fox.

  • BDS
    BDS Member Posts: 172
    #9
    New Treatment Options

    Paula ,best of luck in whatever treatment options you decide. I wish you the best.

  • pjune127
    pjune127 Member Posts: 127
    #10
    alice124 said:

    Beware the Underdog!

    Photo

    Am watching our Baltimore Ravens fight the favored Denver Broncos as I type this  and am cheering for our hometown purple and black. Don't know what the game outcome will be as I write this, but I'm confident the Ravens will fight just as I know you will fight. When I see this poster Paula, I think of you because there's no quit in you, just one of a boat load of admirable traits. You're an inspiration to us all. Love that smile that never fades no matter what.  On to next battle. . . We're with you.

     

    I always root for the underdog!

    I love this picture and your explanation!  Thanks, girlfriend! xoxo

  • garym
    garym Member Posts: 1,647
    #11
    ATTA GIRL!!!

    Dear Paula,

    All I can say is WOW!  Your post should be required reading for all that are here, all that have been, and all that ever will be, what an inspiration.  Once again I find myself perplexed by the question; how do I tell you how much I love and admire you, and yet wish I had never met you all in the same breath.  You have a rare combination of spunk, spirt, grit, and plain ole guts that most can only hope for.  You are that person that everyone wants on their side in a fight, we're with you all the way!  And FYI, there's no such thing as fight'n dirty, kick RCC in the nads.

    You rock,

    Gary

  • Lespauldude
    Lespauldude Member Posts: 10
    #12
    I FIND THIS INCREDIBLE

    Paula,

    Judging from your experience with MPDL3280A, one would think that the following announcement from Pinnacle Oncology Hematology (the trial administrator) was just a tad too optimistic :  

    "Our PD-L1 antibody was well tolerated, and there were no limiting toxicities," said Michael S. Gordon, M.D., research director at Pinnacle Oncology Hematology in Scottsdale, Ariz" "No dose-limiting toxicities or grade 4 adverse events have been reported. "We were able to escalate to the top dose without being limited by any serious side effects," Gordon said."

    Once again, Pharma skews the results for the sake of potential profit. Sure, they have to make it to Phase III to obtain FDA approval - but that does not warrant blatant lies regarding the trial results. This stuff really pisses me off.  See the link below:

    http://www.sciencedaily.com/releases/2013/04/130409155823.htm   

    I'm sorry that you were taken to the edge of sanity but thankful that you are back in the ring to take another swing. 

    Scott

  • Djinnie
    Djinnie Member Posts: 945 Member
    #13
    In Two Words

     

    True Grit

     

    Best wishes,

    Djinnie

  • GSRon
    GSRon Member Posts: 1,303 Member
    #14
    Lespauldude said:

    I FIND THIS INCREDIBLE

    Paula,

    Judging from your experience with MPDL3280A, one would think that the following announcement from Pinnacle Oncology Hematology (the trial administrator) was just a tad too optimistic :  

    "Our PD-L1 antibody was well tolerated, and there were no limiting toxicities," said Michael S. Gordon, M.D., research director at Pinnacle Oncology Hematology in Scottsdale, Ariz" "No dose-limiting toxicities or grade 4 adverse events have been reported. "We were able to escalate to the top dose without being limited by any serious side effects," Gordon said."

    Once again, Pharma skews the results for the sake of potential profit. Sure, they have to make it to Phase III to obtain FDA approval - but that does not warrant blatant lies regarding the trial results. This stuff really pisses me off.  See the link below:

    http://www.sciencedaily.com/releases/2013/04/130409155823.htm   

    I'm sorry that you were taken to the edge of sanity but thankful that you are back in the ring to take another swing. 

    Scott

    New Chance

    Hi Paula..!  Your story is amazing..!   I wish you great success on your next treatment..!  Please keep us posted..  Oh yes.. hope you find your new beau to be kind and loving...

    Ron

  • garym
    garym Member Posts: 1,647
    #15
    Djinnie said:

    In Two Words

     

    True Grit

     

    Best wishes,

    Djinnie

    Coincidence?

    There is mounting concern since many weeks have past without any word from Paula (pjune127).  I just noticed that her last post #127 matches her moniker, coincidence?  I hope and pray she is well and life has taken her to a happy place.  God bless her!

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