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foxhd's picture
foxhd
Posts: 2588
Joined: Oct 2011

Position available for the "new" poster boy of MDX-1106 or clinical trials for that matter. For the newer members here is what you may have missed. Left radical nephrectomy in march 2011. By oct. 2011, loaded with mets with life expectancy of 6 months or less. Several cancer centers only had to say,"Good luck." Fortunately I persisted and at my 4th consult, I was offered a place in the promising clinical trial of MDX-1106, or nivolumab as it is now called. Within a few months nearly all tumors had been wiped out! I had a couple persistant bone mets which were radiated with questionable results. Anyway, a few more new mets have appeared in my lymph nodes, lung and bones. So lo and behold, I have been pulled from the trial. Major SUCKS.

As I have shown, I am a good candidate for immunotherapy. (so far). So, next week I get the required brain, and body scans, pulmonary function and cardiac stress test. Then I will be admited to Yale New Haven Smilow Cancer Center for a go at Interleuken 2. The plan remains to "Cure" me of cancer. Not just treat it. Who says cancer isn't fun? I'd only be out golfing or riding my motorcycle anyway. I should breeze through the testing based on my fitness level. But who knows. This does worry me. I think I can tolerate the treatment based on my marathon training. I learned alot about my physical limits. I can hang in for just a little more. Over and over. So we will see. It is still an unknown.

It has been a great ride for about 18 months. But I must relinquish my position. Applicants must have irreverent attitude, positive outlook, sense of humor, and plan on being here for awhile. Typical pageant questions will be asked. Women, will have a swimsuit competition. Send all photos to my csn email.

No responses required saying how you are sorry to hear this. Good lucks accepted and available Karmas are appreciated. I am still having a very difficult time posting (signing in) so if I appear to be ignoring posts, it's not me. It's the site.

Poster boy or woman is an open ended position. Must be willing to sacrifice personal life for endless hours on the computer. Good luck to all prospects.

Mikeyswife
Posts: 31
Joined: Mar 2013

Wishing you the very best in all your screening tests.  Here's to kicking cancer's butt!

Karen

donna_lee's picture
donna_lee
Posts: 618
Joined: Feb 2009

You are one tough muther...Thanks for being a guinea pig for a new drug that will give all of us more HOPE and better opportunities for long term survival.

Which brings me to a bad item of fact.  The favorite food of those in Ecuador is not chicken!  You guessed it, guinea pig.  I had a chance to visit with a University student from Ecuador who was in Oregon taking an intensive English language session for 6 weeks.  And that led us to a group discussion of interesting (or strange) foods we've enjoyed.

No, not Haggis in Scotland!  It was fresh camel's milk butter with really fresh dates that oozed like honey, while we were in Kuwait.  We had gone to the camel races, and for a  between races entertainment, officials went thru the stands and picked some of the largest foreigners in the stands, which included my husband (a former college football lineman).  They faced off in a tug of war with some rather diminuitive Kuwaiti men.  Of course the team of Brits, Aussies, and Americans won.  The "prize" was to be invited to the Emir's grandson's tent on the grounds and share tea, butter, and dates with him and the Embassy reps from Bahrain, UAE, and Yemen.  We all sat around the open sided tent on oriental carpets rolled out on the sand and dipped into butter with these enourmous dates.

But I digress.  So glad you are doing well and had great news.  If we could all have such good news, we'd make the newbies think Kidney cancer can be scary but can be conquered.  And my apologies to Tex, if he likes his Haggis. Personnaly, I prefer single malt.

Have a good weekend, Fox.  I'm thinking of you.

Donna

 

 

DMike's picture
DMike
Posts: 252
Joined: Nov 2011

 

You'll do well with IL2. Hell, I did it, so I know YOU can do it. If you have questions, ask away.

The new poster boy/woman will have big shoes to fill. I'm thinking of you and I'll help you any way I can when IL2 time nears.

--David

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hey Fox Master.. You and your sorry arse are not allowed any time off... Now even if I have to jump on an airplane... You will get treated somewhere..

 

Ron

dhs1963's picture
dhs1963
Posts: 466
Joined: May 2012

I hope it works out.  This cancer thing is quite a rollercoaster ride.

Gordon Charles's picture
Gordon Charles
Posts: 91
Joined: Jun 2012

Il-2... potentially very good stuff...  everyone reacts differently but IF:  you get the rigors...(bad shakes) you'll feel them coming... like a sudden shiver....at the first sign of the first one...get the warmed blankets coming pronto..(they'll have them)  and make sure your nurse carries a syringe of Demerol after they hang the bag.  The Demerol helps.  Drink a lot of fluids and keep the pee coming..... they'll want a certain output to keep you going.  The real test to watch is your creatinine... that was what sent me home....  If you have a port it will get a lot of use...if not you'll have one put in for the treatment.  Remember Foxman... we take NO prisoners here!!!!

foxhd's picture
foxhd
Posts: 2588
Joined: Oct 2011

Thanx Gordon Charles. Good advice.

one putt
Posts: 72
Joined: Sep 2012

As a fellow member of the MDX-1106(nivolumab)club I always looked at your success as a benchmark to set my sights on. For the newer members, RT radical nephrectomy Nov. 2011, IL-2 Jan.2012, nivolumab/votrient clinical trial since May,2012. My IL-2 was terminated(14 doses the first time,11 doses the second time) after mixed results. I have no doubt you will be successful. I'm a broken down golfer-lawyer and you're a strapping marathoner,golfer-biker. Lawyers seldom give free advice(right Tex ) but any advice you need about IL-2 is on the house.

one putt
Posts: 72
Joined: Sep 2012

After not letting me put in one response for hours, it duplicated. What's wrong with this place?

alice124's picture
alice124
Posts: 897
Joined: Mar 2012

Fox – Poster boy??? Any description of YOU with the word BOY in it is terribly inaccurate anyway.  You’ve always been and continue to be more the Superman or Ironman type.

You—without a doubt—have the best, most positive attitude of anyone I have ever known.  You’ll never know the many times I’ve come to CSN feeling a bit down or feeling sorry for myself and run head on into one of your posts. That positive spirit of yours is contagious.  And your particular contagion has created a boat load of  good karma. It’s coming your way my friend. We all owe you and, even more important,  love you! We’ll get through this. . .

 

 

 

foxhd's picture
foxhd
Posts: 2588
Joined: Oct 2011

I appreciate offers of experience in getting IL-2. Thanks. It's one of those things. I was having it way too easy.... Just to stay politically correct, men, you may also send your swimsuit pictures for consideration. Who would like to have them sent to them? ...Yale isn't as intense with the routine. They only do 8 doses of IL-2 over 5 days to reduce the side effects. They say they expect as little as 4 doses to be effective. So, if it will work, they will know early...non the less Alice, the "poster boy " position is available. It needs a younger spitfire. Would you like the speedo pics? Just asking. Maybe you could forward them to Paula. She should be here in this conversation. I'm happy with the plan. I'll do other drugs later if need be.

Alexandra's picture
Alexandra
Posts: 1316
Joined: Jul 2012

(Good luck + good karma)2

You have a standing invitation in Canada.

Speedo pictures always appreciated.

 

Hugs,

Alexandra

 

 

Limelife50's picture
Limelife50
Posts: 459
Joined: Nov 2011

Well i guess that might mean no beer for you for a little while but not to worry i will raise my miller lite can from time to time and propose a toast that you are toughing it out while going through HD-IL2 treatments,good luck to you Fox!!!!

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

This turn of events took me, too, very much by surprise and I've been pondering its significance.  Eventually I solved it.  Here's the way it went down, folks.

There was a hush-hush meeting of the top RCC oncologists.  During discussion of strategic approaches to treatment, the resurgence of HD IL2 was a recurring theme. They noted the recognition that IL2  is more useful than was previously believed.  It's now acknowledged that it often has delayed benefit, even when thought to have 'failed'.  Also, much improvement has been made in administration of the drug and handling of side-effects.   Recently, with the promise shown in combinations of IL2 with other approved agents, there is a need to re-appraise this treatment and give it more prominence, to give it the spotlight, in fact.

Thought was given to how to go about this and the point was raised that IL2 has been overshadowed in the last few years - by nivolumab in particular.   The latter drug, formerly best known as MDX-1106, has gained great attention since having Foxlight trained on it.  Something similar is now needed for IL2.  Of course, it wasn't long before someone suggested trying to get the Fox himself involved and the present situation is the result of the approach made to him to see whether he would accept the mission. 

I'm sure no-one would have doubted the outcome.   Fox has inspired all with his demonstration of the merits of nivolumab and his promotional powers are no longer needed there.  Naturally, he accepted a new challenge without a moment's hesitation.   Now, we'll all see the magical effects HD IL2 can deliver.  With the new beacon of inspiration it's about to gain, it will soon be bathed in Foxlight!

We shouldn't overlook the element of self-sacrifice this entails - Fox has taken on this ambassadorial role instead of becoming the new Bond.

 

 

dhs1963's picture
dhs1963
Posts: 466
Joined: May 2012

I do not know much about Yale's program, execpt my favorite NIH fellow -- the one who explained things the best and seemed to understand my disease the most sarcomitoid metastatic RCC -- Dr. Brian Shuch, moved on to Yale last week. 

I was sad to see him go, and was actually thinking of following in his care to yale.  But NIH is 15 miles from my house and Yale is about 280.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Hey Harley Guy.. it dawned on me... I take it you have a good cirlce of bike buddies...  maybe one of them has a side car rig and if you have the need but not the strength.. he can take you for a spin.  If not, then I have a pal or two your direction that may be able to do that..!    We both know a good ride does wonders for the attitude..!  Notice I did not even suggest you ride pillion... heh..

Hang in there... holler loud if needed... 

Ron

foxhd's picture
foxhd
Posts: 2588
Joined: Oct 2011

I'll miss too much riding time. No riding b@%h for me!

angec's picture
angec
Posts: 842
Joined: Mar 2012

Did I hear someone say SPEEDO????  Hey Fox, I think you would look absolutely stunning as the new "Bond"!  But we will let you go ahead and take on the IL2 for the time being.  I am so happy that the next move is already in place. I know if anyone can do this, it is you, you da man!  We will be praying for you anyway and want to be sure you remember how to bang those guitars when you are done!  Love and such and major big hugs!! XXOOO  Did i hear someone say SPEEDO?

foxhd's picture
foxhd
Posts: 2588
Joined: Oct 2011

have been rolling in. Come on now guys, ALL SPEEDO PICS TO Alice, Alexandra and Angec. If I start throwing up during treatment, they will think it is the medicine. Skinny legs and all. I'm changing someones name to "Swizzle stick!"

angec's picture
angec
Posts: 842
Joined: Mar 2012

LOL Fox!  Perhaps we better be sure to add our email addresses Alice and Alex! :)

Darron's picture
Darron
Posts: 284
Joined: Jun 2013

tbanks for blazing the way on the Nivo. While I am on the next phase with Sutent, I dont think I am ready to pose in a speedo. Good luck on the IL-2

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

You'll continue to be my hero on here! I'll keep watching for your continued success!

I believe in you amigo!

RCC may be tough, but I believe you are tougher!

Michael

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

Fox,

As bikers we rarely take the direct route on any journey understanding that the trip is more important than the destination.  This is just a left turn to new adventures on your way to NED!!!  When my youngest son was diagnosed with Hodgekin's Disease I told him that had I been forced to choose one of my children for that battle it would have been him because he was so well suited for it mentally and physically (he now competes in Ironmans), the two of you are very much alike.  I believe you are destined to succed, MDX has RCC staggered and leaning on the ropes, and IL2 will deliver the knockout blow!  If I can help in any way along the way, just say the word my brother, just say the word.

Stock up on green banannas,

Gary

BDS's picture
BDS
Posts: 161
Joined: Aug 2012

Fox just came back from 4th of July vacation and read your post.  You will be in my family’s thoughts and prayers. Best of luck in your quest for NED, please keep us posted and Godspeed. - BDS

foxhd's picture
foxhd
Posts: 2588
Joined: Oct 2011

I asked a few people over the last week if my jokes and "shock jock" humor about my cancer bothers them. No one is really comfortable with it. But then I explain that if I was freaked or worried, the time spent would never be recoverable. They begin to understand. We just move on. Expect the best and prepare for it. Some guy who knows of my cancer was admiring my bike recently. I told to wait awhile cuz my wife would be selling one just like it next year. After he got real uncomfortable about it, I said, wait it WILL be this bike! I asked him if he wanted me to add any accessories before then. That was mean. But then again, I'm an idiot. It was funny to me.

Hey Alice, it got me free lunch and beer after golf today. Thanx one putt! Do you have any other tricks? What the heck. Not proud. Hungry, not proud. Another friend wants to buy me lunch this week too. This gig is starting to pay off!

Tomorrow is ct of chest, ab, and pelvis bright and early. 5 hours later is pulmonary function test. I guess I'll hang around Yale. Maybe go to the Peobody museum. Maybe even the PEZ factory to load up on candy. Never a boring day.

Just an interesting side note. I got a bill for my zometa last week. One dose. $8500.00!!!!!! I 'll appeal this one.

AprilandChuck's picture
AprilandChuck
Posts: 109
Joined: Feb 2013

I will not say good luck I will say Break a Leg and we are sending amazing amounts of good karma your way...however you are still our poster boy for so many reasons..when I first logged on here it was after reading some pretty grim numbers involving mrcc I was terrified and had zero clue how to help Chuck..while i was still lurking you and Tex started giving me an actual reason to hope..Tex with his massive amounts of info and you with your fighting spirit..and info about this new drug..you are a pioneer..Its fitting that this journey takes you back to where you wanted to start " I just wanted a shot at il2 and was not giving up" paraphrasing something you posted a while back..You are now getting your il2 something that was all but impossible for you at the start of your journey..and I will point out the obvious. Nivolumab boosts the t cells ability to attack cancer that's put in the simplest terms sorry for that..they say t cells have memory...HD IL2 boosts your bodies t cell production..so a good hypothetical is you are going to have a massive amount of super charged t cells hitting cancer..and maybe this is just where you were supposed to end up..your poster man, superman days are not over our friend they are just moving in a new direction!  Again sending lots of good karma well wishes and hugs your way!, p.s. keep us posted and of course you are going to ace the tests!

foxhd's picture
foxhd
Posts: 2588
Joined: Oct 2011

Thanx April. I like the way you think. Chuck is a lucky man. Make us proud Chuck and pick up your application at the door. Does april allow pics of you in a speedo? Never mind.

GSRon's picture
GSRon
Posts: 1306
Joined: Jan 2013

Geesh Fox.. you got the women and the men showing their undies to you..!   Can I have your left overs..??  (the women I mean..)..  :)

Ron

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