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

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

 

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!

 

 

todd121
Posts: 593
Joined: Dec 2012

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's picture
pjune127
Posts: 127
Joined: Dec 2011

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. 

I am alive
Posts: 221
Joined: Jul 2012

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! 

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

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.

alice124's picture
alice124
Posts: 860
Joined: Mar 2012

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.

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

But I'm right with you about Paula.

foxhd's picture
foxhd
Posts: 1921
Joined: Oct 2011

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.

pjune127's picture
pjune127
Posts: 127
Joined: Dec 2011

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

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

BDS's picture
BDS
Posts: 100
Joined: Aug 2012

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

Lespauldude
Posts: 10
Joined: Aug 2012

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

GSRon's picture
GSRon
Posts: 1255
Joined: Jan 2013

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

Djinnie's picture
Djinnie
Posts: 769
Joined: Apr 2013

 

True Grit

 

Best wishes,

Djinnie

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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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