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My Story

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi All,

I've been occationally looking at this forum for the past two years, and I thought it was time to share my story for the benefit of others.  I'll be succinct. I'm male, 55yrs, and have been physically active all my life. So, for the record:

  • 2012: Pee'd blood, kidney pain. Went to clinic, thought to be kidney stone(s). Got pain meds and "pee filter" to capture stones. [never caught anything. first clue]
  • Summer 2013: Pain in left shoulder when riding my motorcycles. Ultimately, too much pain in arm to load dirt-bikes into truck. Went to primary care. Got Cortisone shots.
  • Fall 2013: No relief. Got MRI of arm. Found tumor in upper left humerous. Looked like my arm was about to fall off. Soon thereafter pee'd blood again. Got biopsies of tumor, ultrasound of kidneys, CAT scans, etc.: Stage 4 kidney cancer in right kidney with single metastasis to left humerous. Clear Cell mRCC.
  • December 2013: Radical nephrectomy. Not clean margins, into vena cava.
  • January 2014: Start radiation therapy on arm and 800mg Votient, plus Xgeva shots, and high blood pressure meds to counteract Votrient.
  • 2014 Scans: NED, NED, NED--reduced Votrient to 400mg [side effects a little better].
  • Spring 2015 Scan: NED--reduced Votrient to 200mg every other day [sweet spot! side effects a lot better].
  • November 2015 Scan: Small spots found on liver, lungs and lymph node.  Back to 800mg Votrient. [argh]

So, I've been on Votrient for about two years now. And I took Xgeva shots for about a year. I've got pretty much full use of my arm back. Back to playing guitar and riding motorcycles (but not my dirt bikes). I had two years of NED scan results. Not complaining.

God's been good to me!  I've got a great wife and oncologist. I've been working the entire time [I'm a software developer], albeit with less energy and stamina due to Votrient.

 

Richgels1's picture
Richgels1
Posts: 26
Joined: Oct 2015

Thanks Rhominator,

It's good to hear a story of NED for 2 years. I'm NED for over 6 months now and am hoping to have my Votrient dosage reduced if my next scan comes back NED. Cool bike. Hope you can continue to ride for many more years. Keep up the good life.

Scott

APny's picture
APny
Posts: 1956
Joined: Mar 2014

Rhominator, sounds like you and Fox have a lot in common. Both ride bikes, both play guitar, and both of you seem to have a great attitude. All the best to you and hope the Votrient kicks those spots’ butt and you’ll be NED again at your next scan!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

start this thread? I don't remember. It all does sound familiar. Except the ned parts. God bless you Rhom! I can't wait until everyone does as well.

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

Great story.  A positive attitude can do great things.  And it is great to have an awesome spouse or significant other by your side. 

nancybuck's picture
nancybuck
Posts: 117
Joined: Sep 2015

Thanks for sharing your story with us. Hoping that the meds do their job and get you great results at your next scan.

 

Nancy

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014

Thanks for sharing your story, may you have continues success at beating this disease.

Forough

 

Allochka's picture
Allochka
Posts: 881
Joined: Nov 2014

Very inspirational, thank you for sharing! Wish you many years full of music, bike riding, work, and love of your family and friends!

Dave418's picture
Dave418
Posts: 95
Joined: Aug 2014

Welcome to CSN, thanks for sharing. Wishing the Voltrient will shrunk those small spots and your next scan to be NED again!!

Dave

MattInVa
Posts: 50
Joined: Sep 2015

My symtoms where the same but a CT found it same day.

I am just starting this journey (Hopefully a long one) but seeing yours and others gives me hope.

 

Matt

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Thanks everyone, for the warm welcome into this community. Over the last two years I've admired this group for the help and support it's shown to others.

PS: The bike has been up to the Arctic Circle in the Yukon and through the Mojave desert. The pic is in a not-so-dry lake bed in the the Mojave.

mrou50
Posts: 389
Joined: Mar 2013

Thanks for sharing your story I am inspired by your 2 years of NED I am at six months now and hoping for more.  

 

Mark

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Glad to hear your story. Sorry you've had some recent new spots show up, but hopefully the new drugs will take care of it.

I'm a software developer too. So we have at least 2 things in common. Although you sound much more physically active than me! I'm so glad you can still ride your motorcycle. I took a class last year and got my license, but ended up chickening out on getting a bike. The traffic in southern California is so terrible. It's not me I'm worried about. It's the people driving cars and texting/browsing facebook. :)

Best of luck on the new meds. Please keep us updated.

Todd

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Welcome to our forum and thank you for sharing your story.

Hoping you have great results with the new meds!

Hugs

Jojo

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