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MDX-1106 part 6

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Well, here we go. Of course, there is a refresher for old, and a synopsis for new.
March 2011 led to a left radical nephrectomy. I was 59 years old, physical therapist. For years,( and I mean 40+ years) I weight trained 4-5 x a week. Ran 3 miles every other day..... By the end of the year, I was loaded with mets. Lungs, liver, lymph nodes. I was not expected to make it through the spring. Hip and spine were next. Had difficulty walking. Living on percocets... A couple cancer centers had said they could not help me. But, third times a charm. The Smilow cancer center at Yale New Haven had scheduled me to see Dr. Kluger. She was involved in a new clinical trial. Called MDX-1106. They were excited about it. Now, if only I could qualify. Many scans. 2 biopsies. Yep. I qualified. I began to have rapid improvements. Around 20 or so tumors have resolved in my lungs, liver and lymph nodes. Bones cleared! Minimal side effects. DAMN! LIFE IS GOOD!!!!!!!!

I get my infusions every 3 weeks. Scans every 6 weeks.

Now it is summer 2012. Back hurts. Too much. Did not let it bother me and rode and camped several thousand miles on my motorcycle. Bumps in the road hurt. But, the last couple soft tissue tumors are small and stable. Good news. However, T6 tumor has doubled in size. Rib tumor growing. Time for an adjustment to my treatment. I am given zometa via IV to help my bones. I am being scheduled for targeted radiation to blast my bone tumors.

I will have to investigate why this might work considering that chemo or radiation are not effective treatments in general. It's possible that by breaking up the tumors, the MDX can be more effective.

Just a blip in the road. I've had an easy battle since the start of MDX-1106, or also called Anti- PD1. Now a little modification to my treatment. Oh well. I have an excuse not to stack firewood. I'll behave for awhile and do more as I improve.

I've been one lucky son of a gun. That's not about to change. I'm still the poster boy for beating RCC.

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Fox,

I think you don't give yourself enough credit when you say you are lucky. Clearly, from the beginning, you have been tenacious and have not been one to accept defeat. Keep up the fight. Don't forget the "behave" part though. I'm sure that doesn't come easy for you, but it's a necessary step. I look forward to the future post where this bump in the road is behind you.

Kathy

tacyarts
Posts: 73
Joined: Apr 2012

Im sorry that some of your results weren't quite what you had hoped that they would be. I know that the pain is hard to deal with. My cancer has Gone into my upper thigh and my thigh bone broke and have been completely on crutches for over 6 weeks now. I hope that you can stay positive and dwell on the good part of diagnosis and have faith that the drs. Will have a solution for the problem tumers. Keep the faith fox, it is important for your recovery as well others that are following along with your journey.

rae_rae's picture
rae_rae
Posts: 268
Joined: Oct 2010

Glad to hear you are having some continued improvement! I love to read your updates because no matter what you report, it's always with a positive outlook. Sounds like you've had a busy summer. The blip is nothing compared to what's been accomplished. You are the poster boy for positivity! I may not post much anymore, but i am still following everything and cheering! Go kick some more cancer in the butt!
Rae

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

You and Texas Wedge are my heros (as is everyone on here). NO matter what life throws at you, you keep a positive attitude. I have learned so much from both of you. Formost, is to look at things that may go wrong, as you put it.. as a "blip in the road :-) You are a very special man. thank you

~Judy~

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

You and Texas Wedge are my heros (as is everyone on here). NO matter what life throws at you, you keep a positive attitude. I have learned so much from both of you. Formost, is to look at things that may go wrong, as you put it.. as a "blip in the road :-) You are a very special man. thank you

~Judy~

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

You and Texas Wedge are my heros (as is everyone on here). NO matter what life throws at you, you keep a positive attitude. I have learned so much from both of you. Formost, is to look at things that may go wrong, as you put it.. as a "blip in the road :-) You are a very special man. thank you

~Judy~

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I am so sorry.. dont know how or why that went in THREE times haha.. I guess its time to go to bed .. night all

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I am now actually looking forward to the radiation. I am becoming my own little nuclear power plant. I will hire myself out to supply energy to jump start motor vehicles, boil water, exterminate rodents, and remove paint. I'll now take a break from any serious ex and live the life of leisure for awhile. The percocets work pretty good for me so i'm still a happy boy..... Judy, I'll have some time to help with your stuttering problem.

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

As always, you'll crush those blips in the road. John's been on Zometa since starting the trial, and Zometa has not caused any serious side effects so far. Do you know yet what modifications are going to be made in the treatment other than the addition of Zometa?

Poster boy - just in case you forgot - we all love you!

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

Alice, Alice, have you caught up with the exchanges on Acor sparked by a member there whose husband, John (!) is on Zometa and Votrient and having problems? You might find it worth looking at. I trust it's not relevant for you two but you might want to consider whether you could add helpfully to that debate.

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

Foxy,

You remain a bright spot (pun intended) in the fight against RCC! A little radiation will just supercharge you like the Eveready Bunny, look out cancer, the fox is coming to get ya!! If you aren't already, this will probably make you a blip on air traffic control screens.

Rock on,

Gary

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

I think fighting cancer would be more comparable to a war not a battle.In a war you fight many battles,so i think when it is all said and done Fox you will win this war.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Alice, no other changes to my program. The zometa and radiation do not alter the trial protocol. I have a consult monday morning.

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

Fox, I'm in serious mode today (well, on and off anyway).

In another context, I've just discovered that the official remit of our esteemed CSN precludes the dispensing of expert advice by professionals. We're here to compare notes, qua patients or caregivers, and to give reciprocal emotional and practical support. That's a worthy enough raison d'être but it shuts out access to better-informed help.

My purpose in this post is not to alarm you or our recent highly valued scan expert, both of whom are probably well aware of the theoretical boundaries to contributions here by members other than us laymen. My concern is not for the input you make but for the input you are able to receive. You are much too highly valued for us to lose. (By "us" I mean this planet, not just the CSN forums.)

Accordingly, please consider laying out your current situation on KIDNEY-ONC where there aren't the same strictures on professional input. There are some contributors over there who are not only as caring, supportive and intelligent as our many friends here but who also have an additional wealth of professional knowledge and very hard-won experience that goes way beyond anything here. Some of our regulars here whom I most treasure (you know who you are!) have taken up places over there and have, I believe, both benefited and contributed by so doing, but still continue to warm our hearts in sharing here.

Most of the members there have much worse prognoses than we generally see here but quite a few have been contributing vast amounts of valuable information for very many years.

What prompts this ramble is reflections about a particular member on that list serv. I'm not really much of a fraidy cat but his history frightens me. He is a highly educated, articulate and intelligent man. He's also a physical giant who was an elite athlete at 6'7" and 235 or so (now in his 70s and 290 or so as a result of his medical history). The first he knew about having stage 4 grade 4 RCC was when, 5 years ago, he was walking across his yard when his femur snapped in half. This was hours after he had performed his regular 2 1/2 hour workout, lifting poundages I can only dream about, and walking his two dogs. His leg had to be rebuilt and of course his kidney cancer was discovered and dealt with.

Whenever I get the occasional twinge, or have any difficulty in remembering a name,I get a little concerned about the ultra-sneaky nature of this malady and how one can't take anything for granted, such as feeling fine and things looking good.

My point (and I sometimes get round to it, eventually) is that you could get some very valuable expert feedback on KIDNEY-ONC that would help to guarantee that we all get to enjoy your company for a lot longer while, at the same time, the folks there could receive the same delight and valuable information that you dispense to all of us here.

I hope that you'll forgive my presumption and that you'll consider my plea. I'm sure you can believe that it's genuine and very deeply felt.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I've tried to negotiate that site several times without good results. I'll try again.

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

Fox,

I too had plenty of trial and error prior to joining the ACOR group. But I finally did. If I can help out by sharing my mistakes, I'd be more than happy to do so. One early error I remember making in registering was checking individual email notification rather than daily digest. BIG MISTAKE! I was overwhelmed with emails; received every email that anyone posted on that site. Just thought I'd offer and try to be useful.

P.S. In my opinion, ACOR is not as warm and fuzzy as this site, but the information and experience is phenomenal.

NanaLou
Posts: 69
Joined: Oct 2011

Glad your spirits are still good. And the Meds are still doing there job. I hope the Radiation takes care and helps the MDX kill all the cancer. Sending good Vibes your way!!

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

I hope you will glow in the dark...

Thinking about you and love your honesty, positive spin on everything, and your courage. People always tell me I inspire them by the way I am handling this disease. You are responsible for my attitude, more than you could imagine. Hang in there, smile, make me smile, and it will be all right. Prayers and light being sent your way, my friend.

Paula

I am alive
Posts: 223
Joined: Jul 2012

Everything pjune127 just said. Attitude is HUGE and your's is inspirational. You have been lucky, but you've also made you're own luck. Two cancer centers said they couldn't help you yet you kept searching until you found the one with the magic bullet. (Note to self: never give up.) So start planning next year's bike trip. Why not? As far as the radiation goes, aren't they having good results with image-guided target radiation therapy on bones? Just another bump in the road, though it probably feels like a crater.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Attitude, luck, persistence. When I was 17 I had a fight with my demoralizing alcoholic father. On the verge of breaking down I decided that he would no longer project his inadaquacies on me. A few years later I was exposed to Dale Carnegie's, "How to win friends and influence people." I made a concious decision at that point to always carry a positive attitude. I never state that I'm "Not bad." It's always "Great, excellent, wonderful" or something similar. Basically, if you are in a bad mood then you put everyone in a bad mood. Smile, say you are great, and it rubs off on them. I seldom ever use a negative connotation in any situation. ( well, I do acknowledge many of my golf shots SUCK). This mindset has made my career as a physical therapist successful and effective. I have always been known for this. Try telling a joke when your angry. Then try again with a smile and a twinkle in your eye. It is a way of life. Not a phoney act. When I had my first scan looking for that kidney stone,the ER Doc came to me very solemn. "You have a tumor" he said. It was early in the morning. I could see that he had a bit of difficulty telling me this. What a way to have to start his shift. I told him to tell me again with a smile. Told him,"Don't let me ruin your whole day." I know his day went better from that point on. (then I had to work on my wife) In any event, everyone can smile and use positive frame of reference. It is easy.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I have already made some plans with my buddies for riding and camping next year. But until then, I am going to concentrate on rebuilding my 1970 VW camper. (old vw's. another wackey culture I enjoy). Muscle cars out. Air cooled in. So much to do. Now if I had any $, I'd be golden.

I am alive
Posts: 223
Joined: Jul 2012

You're absolutely right. We can choose to be happy, no matter what, and that simple decision will color everything in our life. You know, I don't like the term "cancer victim" because I don't feel like a victim. I figure terrible things happen to people everyday. Most of us carry our share of heartaches. Cancer is just one kind of heartache. Sure, it can end your life. But none of us are getting out of here alive. Don't get me wrong - I'm only 60, a baby! My daughter is just starting her sophomore year of college. I want to be around for a long, long while! But if cancer has taught me anything it is to live in the moment. As my father used to say, "Hey, I woke up this morning. That makes it a great day." I don't spend a lot of time projecting into the future, but I do keep moving forward.
Back to attitude, when I was first diagnosed 8 years ago, one of the first oncologists I went to for second opinions and such met me unsmiling and grim. At that point I asked how much time do I have? (I don't ask that question anymore. I like to think of the whole process as open ended. Why not?) And he said he didn't know. "3 years, 5 years, maybe (and here he paused) 10 years," but his inflection gave the impression that 10 years would be a stretch. The next doc I consulted with walked into the room all smiles and positive energy. He radiated life. And you're right - if someone smiles at you, you smile right back. He started by saying this was a great time to have kidney cancer, then he made a joke about it. He rattled off a litany of latest advances in treatment and said more were on the way. He introduced the notion of living with cancer, viewing cancer as a chronic condition, like diabetes. He said he had a patient going on 14 years living with his kidney cancer. My prognosis? Absolutely open ended. I left the office buoyed and even happy. I left smiling and hopeful. That was his gift to me. And in large part because of it I've lived these past eight years happy and hopeful rather than devastated and depressed, counting down the clock. Now I've got more mets and am in a clinical drug trial, but hey - I'm thrilled to be in the trial! Like you, I feel lucky. And I'm still smiling.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

I saw the radiation MD yesterday. I am now scheduled for an MRI tomorrow. Then it will be targeted radiation to clear the bone mets. They are concerned with growth approaching my spinal cord. We know THAT can't be good. Well, we all have to have something to do this september.

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

Know we're all thinking of you and pulling for a quick fix and your return to no pain. Need to get you back to your "boom boom pow" FLY mode.

DMike's picture
DMike
Posts: 239
Joined: Nov 2011

Hi Fox,
I'll be thinking about you and sending even more positive energy your way. I appreciate you and everything you do each day to help all of us. --David

love_of_my_life
Posts: 28
Joined: Jul 2012

Hey, wanted to let you know that we are thinking of you while you go through this.

Tom and Holly

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

What's the latest Larry? A lot of us here are waiting anxiously for news and praying it's not too bad. Good would be better.

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

Hey Mr. Wedge,

He's FOX on this Board!

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

Hallo Foxy of course he is!

tacyarts
Posts: 73
Joined: Apr 2012

Just to let you know that I'm thinking alot about you and hope that you get good news.

foxhd's picture
foxhd
Posts: 1951
Joined: Oct 2011

Thanks all. First off, I've had less pain for several days. So maybe I'm still improving from the MDX. The MRI took almost 2 hours of staying motionless. I felt like a teenager on a saturday morning. Now I wait to get a call.

jam66
Posts: 55
Joined: Jun 2011

And crossing all fingers and toes, Fox.

MedScanMan's picture
MedScanMan
Posts: 108
Joined: Jul 2012

Waiting and hoping you get just the results we're all hoping for. Checking in on you every day here Fox. Now.......please hold still. I bet you heard that all day.

Jeff

NewDay's picture
NewDay
Posts: 175
Joined: May 2012

Hi Fox,

Just want to chime in that we are all thinking about you.

Kathy

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