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What a WONDERFUL day

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

As I sit waiting for my infusion to begin, I am presenting a glow and sense of well being. For the past week I've been virtuay painless in my ribs and spine. Groovey! My blood work has just returned and is perfect! Let's see, what else could be important........ummm.......Oh yeah, For the past week or so, my energy is super. Running 2.5 miles every other day. Weight training at about a 2/3's intensity from my norm. .....anything else......I almost forgot,(yeah right)...My scans show NO soft tissue mets anywhere! None in my lungs, none in my liver, none in my lymph nodes! What a way to start my day on this first day of spring. There is one stable lesion in my spine. (We take stable). Another fracture in my rt rib (that makes 2 or 3 rib fractures). This has been the source of my pain, but the lesion is smaller and no different intervention is required. Funny how rib fractures hurt like hell for a while but then just stop hurting. But that teensy bit of a problem is of no issue to me. This is AWESOME! UNBELIEVABLE! Thank You Smilow Cancer Hospital at Yale New Haven!!!! Thank You MDX-1106! Thank You Dr. Kluger! (she was away today so I missed my hug). And thanks to all on this board. None of us have to go through this alone.We have shared each others thrills and disappointments. You are all my most appreciated friends. Thank you, thank you......I am a happy boy, a happy boy, a happy boy, ....all together now. Key of C, I am a happy boy............Fox loves you!

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

I'm speechless (doesn't happen often) too choked up to even type...WOWZER!!

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

STUPENDOUS!!!

DMike's picture
DMike
Posts: 237
Joined: Nov 2011

Fox,

I'm so very, very happy for you and just think of how many people you will help in the future. You don't know how much you motivate all of us. I'm very close to getting my ducks in a row for new treatment. I have a lot of hope for a good outcome and you are one of my sources of hope. Thank you!

--David

Limelife50's picture
Limelife50
Posts: 409
Joined: Nov 2011

AHHH yes here in Chicago the temp this time of year sould be around 50 degrees but it happens to be right aroung 25 degrees and with the wind gusting at times you get this nice fresh crispy feeling well with that said what a beautifull day it is!!!!Congratulations Fox it does not get any better than this enjoy the moment and ROCK ON!!!

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

Thrilled Fox. You've kicked off many of our Spring 2013 with smiles, woohoos, and hope. You're such an inspiration of good karma in motion. We love you right back!

cancerat46's picture
cancerat46
Posts: 35
Joined: Feb 2013

Your post just made me tear up!!  I am soooooooo happy and excited for you!

 

Congrats!!!!!!

AprilandChuck's picture
AprilandChuck
Posts: 95
Joined: Feb 2013

What wonderful news :D enjoy your day :D Thanks for sharing with us!! Hugggsssssss

angec's picture
angec
Posts: 621
Joined: Mar 2012

Zippidy Doo Da, Zippidy Ya!   That is excellent! Just Excellent! Question.... is MDX the same as BMS Nivoulamb?  Just wondering.  Mom had some scans yesterday and we are pretty anxious to see what they reveal. She has been on 400 mgs of votrient for about 8 weeks and off last week and a few days here and there in between.  I hope we get some good news! We sure can use it!  Rock on Fox! 

 

Oh. what doseage do they give you if you dom't mind me asking?  Also, are there any side affects like high blood pressure etc? I wonder when this drug will be approved.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Zippidy Doo Da, Zippidy Ya!   That is excellent! Just Excellent! Question.... is MDX the same as BMS Nivoulamb?  Just wondering.  Mom had some scans yesterday and we are pretty anxious to see what they reveal. She has been on 400 mgs of votrient for about 8 weeks and off last week and a few days here and there in between.  I hope we get some good news! We sure can use it!  Rock on Fox! 

 

Oh. what doseage do they give you if you dom't mind me asking?  Also, are there any side affects like high blood pressure etc? I wonder when this drug will be approved.

one putt
Posts: 72
Joined: Sep 2012

My dosage of MDX is 2mg/kg of body weight. Iknow Fox's is higher, it's either 5mg or 10mg.I'm sure he'll let you know.

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Outstanding news!  I think I'll have a wee dram of Lagavulin to celebrate your good news before going to bed tonight! n Excellent stuff!  I am very excited for you!

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

By the looks of your picture you may have had too much already!

MDCinSC's picture
MDCinSC
Posts: 574
Joined: Feb 2013

Come on down!  I'm pouring!

NanoSecond's picture
NanoSecond
Posts: 515
Joined: Oct 2012

Congratulations, Fox!

Well done!!

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

The talk of kidney cancer becoming a manageble chronic disease is oh so close. (burp,..Bartender, another Bass ale over here!).. Thanks everyone. What a great day. You just never know what the next scan will show. But I AM feeling good. I'll bet I am ready to swing a golf club as soon as the snow melts.(if it stops snowing). However, We must be cautious about getting too excited. You never know when a new met will show up. But, Who is gonna bet against me? I have been soooooo....lucky. Was told today that the timing of when I got to Yale and the availability of the MDX trial, was in about a single week window. Any earlier or any later and the spot I was given would not have been available. It gives me shivers. Karma? Who knows. Again, why me? But I don't need an answer. Thank you, thank you, thank you. ...I really need to think about lottery tickets, but that might be a curse in disguise. Maybe one winner is all I should ask for.

Remember when you got married and your cheeks hurt after smiling all night? I think I have it again.

Angec, yes it is nivolumab.

 

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

bam u lovin   it,  Fox! Don't hang back in praisin that drug: 

niv o  lumab   it's sure been some story so far and may it go on for countless more episodes.

hydrangea's picture
hydrangea
Posts: 14
Joined: Oct 2012

Fox,

Congradulations!!!!   You are an inspiration to all.  Celebrate this good news and don't look back, only forward.

Fondly,

Diane

one putt
Posts: 72
Joined: Sep 2012

Fox, At the risk of one of Gary's famous responses, let me piggyback on Alice's congratulations on your excellent progress. As a fellow MDX patient I have closely followed your posts, and from day one have used your results as a goal for myself. Keep up the good work .

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

Piggyback and doggie...Hmmm, what the mind conjures up

 

(You did kinda ask for it)

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

The post dropped the rest of my reply. Angec, the dose is 10 mg/kg of body weight. It is the highest dosage. Other dosages are .3 or 2 mg/kg. I heard talk that down the road, a quarterly or semi annually dose may be given as a "maintainance" thingy. If there are side effects, I don't notice them anymore. Maybe dry skin and ?fatigue. Not worth being concerned over.

angec's picture
angec
Posts: 621
Joined: Mar 2012

Thanks Fox.... So nothing like high blood pressure etc.  mom had her scan yesterday and from what my sister thinks her results are mixed.   Not sure yet as I didn't see the reports. 

 

so, do they think this is the sort of thing where eventually you will be off treatment and only have to take it quarterly?  if so that is great....why so long a wait to get it on the market.   Soon I hope!  Xxoo

 

Oh just saw this also

http://investorshub.advfn.com/boards/read_msg.aspx?message_id=85877266

icemantoo's picture
icemantoo
Posts: 1480
Joined: Jan 2010

Fox,

 

Its time to get back on the motorcycle again.

 

Icemantoo

NanaLou
Posts: 67
Joined: Oct 2011

That is the best news I have heard all day!! Congrats to you.  If my IL2 stops working, I won't what your having!!!  

i_love_my_dad
Posts: 20
Joined: Jan 2013

This is so encouraging! So happy for you!  Does anyone know when this drug can be approved?

BDS's picture
BDS
Posts: 90
Joined: Aug 2012

Fox, I just read your post when I came into work. I am so happy for you Congratulations!  Go out and have that Bass Ale and go play the Powerball Lottery. Hey, it’s over 300 million but you may have already won the biggest lottery of them all. - BDS  

angec's picture
angec
Posts: 621
Joined: Mar 2012

I ALSO PASTED THIS ON THE "VOTRIENT SIDE EFFECTS LINK"

 

GOOD NEWS!!  GOOD NEWS!  GOOD NEWS!  I dont' know how long this news will hold but i am going to live in the moment!  As you know mom 80, has stage 4 rcc. She has some nodes, lungs and duoden wall.  She started Votrient 400 mgs (had to decrease due to bp and headaches) on December 21, 2012. She has had to come off of it several times since then. She is off for two weeks now also. Here is the good news! Everything is shrinking.. .only one node in the stomach is more prominent and one node is slightly enlarged or stable in the lung area. But since the last scan she didn't start the meds for two months so it could have been from that period on.  I cannot tell you what a sigh of releif this is. My sister had the report last night and told me it was worse because she didn't understand it. I was up crying and crying all night because i didn't know how to tell mom, she endured like a trooper with the side affects for 6 weeks.  But today she reread it and things are going the way we hope. Let's pray they continue in that direction.  I am about to pass out with relief!  I am so glad to add to the string of good news that has been happening on these boards. I pray for those others that they get some relief as well.

 

I AM GOING  TO HAVE A BEER! I HATE BEER!

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Hooray for mom!!!!!!!!!!!and you could have a margarita! Save the beer for me......or mom.

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

THAT'S GREAT ANG!!!  Gotta love all the good news lately, tip of the ole iceberg and RCC is going down like the Titanic.

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I am soooo excited for you....such great news...I was thinking about you yesterday and hoping everything was going to go great...Your news has made my day!!!Wink

DonMiller's picture
DonMiller
Posts: 92
Joined: Feb 2013

Really great news!!!  I have been reading your posts since my surgery on October 5 of last year.  11CM  T3a Grade 3  sinus fat invasion  muscular branch invasion etc.  While I am not really afraid of dying I am afriad of living sometimes......just waiting on my next scan.  Reading your posts really helps me understand that there is plenty of life and hope regardless of that next scan.   I want to say thank you.

 

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Don, it is all about hope. And follow through. And persistence. A crapload of luck. And believing in your doctors and facility. Ask yourself, If you had a week to live, would you sit and worry or be depressed, or enjoy the life you had left? Love your family, enjoy the beach, ride your motorcycle, golf with Wedgie at Carnoustie.  Life is for living. Rest when you are dead. And DON"T waste energy on worrying. I can't imagine any circumstance where it can be productive.

Raine22's picture
Raine22
Posts: 32
Joined: Jun 2012

Wink

Fox, you give us all hope!  I'm so pleased for you!   I don't post much, but read up several times per week!

 

Angec, so glad to hear yr mom is getting great results as well.

 

my surgery was 3/28/12, Stage 3, Grade 4, 9cm.   On double blind study w Votrient.  In October, a CT revealed a spot on my remaining adrenal, but my CT in February showed shrinkage!  Female, 50 yrs old.

 

is anybody going to be at the Kidney Cancer Symposium in Houston 4/06/13?

Lorraine

angec's picture
angec
Posts: 621
Joined: Mar 2012

Thanks everyone!  Lorraine, I am glad to see shrinkage for you.  It means you are getting th Votrient I assume.  Any side affects for you?  I hope you to continue to do well!  Xxoo

 

Fox, I like Margaritas....but if I have to save the beer for you or mom then I might as well have a pina colada!!   Love those! 

 

I hope to get a good nights sleep tonight!

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

You sure deserve it, and so does your Mom!

Nice to see that lovely smile again once in a while Raine.  Almost a year since your nephrectomy!  How are you getting on on Votrient - any bothersome side-effects?

cancerat46's picture
cancerat46
Posts: 35
Joined: Feb 2013

This is a quote I ran across and put on my computer screen at work and it reminds me of you:

"LIFE IS NOT A JOURNEY TO THE GRAVE WITH THE INTENTION OF ARRIVING SAFELY IN A PRETTY AND WELL PRESERVED BODY, BUT RATHER TO SKID IN BROADSIDE, THOROUGHLY USED UP, TOTALLY WORN OUT, AND LOUDLY PROCLAIMING, WOW! WHAT A RIDE!!!"

 

And this is a little list I put together myself as a reminder to have your attitude every day: (it's also on my screen)

*While your mind works...solve puzzles and riddles every day

*While your legs work...walk, run or skip every day

*While your eyes work...appreciate what you see every day

*While your ears work...appreciate beautiful sounds every day

*While you're alive...be sure you live!!

I'll also add:  While you have 1 good kidney drink good beer!!!Laughing

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

If you go to the thread called  "The True Joy of Life is the Trip" (link below) started by one of the most eloquent philosophers of our forum, you'll find an earlier appearance of that quote from Hunter S. Thompson and a link to a superb column on it by Florence Ondré

It's one of our more poetic threads and I think you'll enjoy it. 

You're on the ball in relating it to Fox, who is the living, breathing example of that philosophy - if you said to anyone here 'Who does this make you think of?' you'd get the same answer from everyone who knows him.

http://csn.cancer.org/node/242953

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

Good stuff! I love that quote. Biker all the way.

I think I can learn something about drinking good beer only. It does make sense.

cancerat46's picture
cancerat46
Posts: 35
Joined: Feb 2013

Anything but GOOD beer is just a waste of money and we all have life saving treatments to pay for!!

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

You are an inspiration to all x

brea588's picture
brea588
Posts: 114
Joined: Jul 2012

Congrats Fox and may it continue to keep on getting even better for you.  You are such an inspiration to us all.

foxhd's picture
foxhd
Posts: 1875
Joined: Oct 2011

We're not done yet. More improvements to be made. Stable is good. It is all a miracle.

cran1's picture
cran1
Posts: 128
Joined: Mar 2013

Congrats Fox!

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