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MDX -1106

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Going for second infusion tomorrow. Next week it is another pet scan and biopsy. It has become a full time job. About 14 medical visits/blood draws in about 8 weeks... Had a case manager call me a week ago. I told her I was slowing down a bit and getting tired. She said she wasn't surprised. She wanted to know if I'm still transferring OK, and if I can still get into the shower by myself. I told her I do. But that was not what I meant by my slowing down.I told her that it takes me 2 more minutes to run my 3 miles! Had a good laugh. I told her she doesn't have to call me to often. Despite all, I'm doing great.

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

Excellent news. Maybe this drug is going to be just what you needed. Fingers crossed for the scan and biopsy results next week. How I wish I could run 3 miles, but if I stick to your advice perhaps it won't be too long before I can.

Looking for the redeeming features of the situation we're in seems pretty important and I'll keep re-reading Kat's inspirational message. My Wife and I have upped our daily walk to 5 miles and our pace has picked up to around 2 1/2 m.p.h. We reached a lovely little Church a few miles from home a couple of days ago and found a Historic Scotland information board there which tells us that there has been a place of worship there, on the little knoll the Church stands on, since 700 A.D. It's almost on our doorstep but we didn't know that. It also made us resolve to go and look at the unique collection of Pictish stones housed in a little cottage museum nearby. Life can still be very good if you give it a chance.

I wish you many more miles, many more showers, positive results next week and far fewer medical visits!

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

Fox,

I'm with T as far as wishing I could run, but I'll stick with walking since there is a lot less pain in it for me. My regular walk is also 5 mi., but I'm a little quicker at around 4.3 mph. (4.5 when we don't have snow & ice). I know this is going to work, I can feel it in my bones, as they say. I'm pulling for you as hard as I can my friend!! Keep that sense of humor.

Gary

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Thanx guys. Do not be impressed with my runs. I do train regularly, but when I'm in good shape, that is what most people are like when they do nothing. I guess after all this time I have learned to red line it. I am cutting down for the winter. Hate running in the cold. I'll do more weight training. ....... Had my infusion today. Nothing to it. Just like a regular I-V drip. How can something so easy be the magic bullet? Too many out here have suffered through treatments... Since this is a clinical trial, I am a ginney pig. But I feel extremely lucky to be in this trial. And I am optimistic. I have little fear. I've already booked two motorcycle camping trips for this summer. ( Which will be several months beyond than my october prognosis). People laugh when they see me and hear how active I am. I told an intern today to take a good look as I am going to be the poster child for a kidney cancer cure. I am not in denial of the severity of cancer. But damn, This is why I was accepted into this trial. I AM A SURVIVOR!! and they know it. Here is hoping that MDX-1106 will be the cure for all!

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jhsu
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I was trying to get in for RAD001 (Everolimus / Afinitor) clinical trial when I got my recurrence with one nodule (0.9cm) met to the right lung back in 2009. It needed to be at least one met with nodules size larger than 1cm to be qualified. Had to pay the visits almost every other weeks to the medical center to take all that scans. I could feel my body glowed like a X-mas tree in the dark:-) A year later the nodule (still the only one) was large enough to get in the door, but I backed out the trial by surgical removed it instead.

Jon

garym's picture
garym
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fox,

Aren't you also the poster child for "Ritalin for Seniors"? Good to hear everything went and is going so well. There are many cases where the magic bullet proved to be something easy, polio and small pox come to mind, lets hope and pray that MDX makes that list. Your pic should also be in the dictionary under survivor, you are an inspiration to so many here.

FLY on,

Gary

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

Ain't that the truth!

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

Ain't that the truth!

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Ok. Here is the thing. I've continued with my exercise as previous over past several years. Occaisionally I stretch a little different or change the angle I lift just a little. As a result I've had some amazing pain in some muscles and tendons that I've never experienced before. Figured out today that that is due to the medication targeting any inflammation or abnormal tissue response to stress. This will go into the category of " side effects from MDX-1106 " Makes me think it is working like crazy. That is my story and I'm sticking to it. We'll see what my dual phase pet scan and biopsy show this week. Won't get results until the 25th.

Texas_wedge's picture
Texas_wedge
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Praying that MDX-1106 is immunotherapy's silver bullet and I like your interpretation. Those results on the 25th are going to be good!

garym's picture
garym
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AMEN TO THAT!!!

rae_rae's picture
rae_rae
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Praying for awesome results! :-)

Olsera's picture
Olsera
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Joined: Dec 2011

I am sure it is working like crazy with your positive attitude it has to be. Good luck with your results they will be excellent!

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Thanx all. They must have used a lot of radioactive contrast for my scans today because my biopsy has to be no less than 18 hours after. I asked How come? They said for the safety of the surgical staff.....Hold on, my cell phone needs a recharge. I think I'll stick the cord in my butt...Boy that was fast. May as well try my MP3 player...Damn!..Think I'll jump start my Harley....

foxhd's picture
foxhd
Posts: 1920
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I've had nothing but excellent care from excellent people at Yale. Professional, compassionate and good sense of humor. Todays procedure was an endoscopic bronchial needle biopsy of a lymph node. Told the Doctor that his endoscopic tools had better taste like meat as I'd been npo for 15 hours. Got a good laugh. Nothing to it. Feel great.

Texas_wedge's picture
Texas_wedge
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Wonderful. Rock on Fox!

garym's picture
garym
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Good to hear, keep'em laughing foxy, what a great attitude!!

Hey, I played 18 yesterday, a January rarity in Michigan, temp about 50F, ground frozen (extra roll), and you could bounce across the ice on the water hazards, had a blast and thought a lot about my golfing friends here, helps keep things in perspective.

Gary

Texas_wedge's picture
Texas_wedge
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Just got back from walking the Championship at Carnoustie with my regular playing partner (that's him in the frost, approaching the famous "Spectacles" this morning). When we went out it was -8C about 17F? so water hazards decidedly solid. Not much roll though because the frost was so thick it was sticky. The last hole I'd played was in November when I par'd the 18th there. Today I played a few holes with my pal's clubs and couldn't resist having a go at 18. Rashly, on the tee I grinned and reminded him I'd had par last time out, before my op. In the event, I had a 17' putt for par this morning and it looked absolutely perfect. I gave it plenty to get through the frost but the hole, on the winter green, was crowned and my ball stopped half an inch from dropping, dead centre. Hubris, I guess.

This is where your remark about keeping things in perspective rang true, Gary. Since our last game in November my partner and I hadn't seen each other until Friday where we met at the funeral of the third member of our long-running golfing trio. To still be able to walk round Carnoustie on a beautiful, sunny, cloudless day with no wind (rare for Carnoustie!!) and not many golfers either - what more could a man ask for?

Texas_wedge's picture
Texas_wedge
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While trying to wait patiently for Fox's results on the 25th and my own path report (sometime soon, I hope), here's one for you bikers, with apologies if you've heard it before:

A mechanic was removing a cylinder-head from the motor of a Harley when he spotted a well-known cardiologist in his shop.

The cardiologist was there waiting for the service manager to come and take a look at his bike when the mechanic shouted across the garage.

"Hey, Doc, want to take a look at this?"

The cardiologist, a bit surprised, walked over to where the mechanic was working on the motorcycle.
The mechanic straightened up, wiped his hands on a rag and asked

"So Doc, look at this engine. I open its heart, take the valves out, repair any damage, and then put them back in, and when I finish, it works just like new. So how come I make $39,675 a year and you get the really big bucks ($1,695,759) when you and I are doing basically the same work?"

The cardiologist paused, smiled and leaned over, then whispered to the mechanic..........

"Try doing it with the engine running."

And the moral of this story is - get the right expert for the job you need done and then trust her/him to do the job right.

foxhd's picture
foxhd
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Joined: Oct 2011

OK, I'll start with the obvious. What are you NUTZ? 17 degrees? Must be like smacking rocks! On the other hand, I am still hoping to go to Myrtle beach in a couple weeks. I'll play anything above 40. As for going to the right specialist, I've 35 years in health care. Nearly half in hospitals. So I have alot of experience to base my opinion. I can not say enough about how excellent everyone at Yale/New Haven hospital has been. There is absolutely nowhere else I would rather be. I am thankful and very fortunate. Regardless of the final outcome. T-W, you are so right. The Smilow cancer hospital at Yale is a world class operation. I'm lucky. On the other hand, my truck needs new tires. But I'll wait until my follow up on the 25th before I spend any money.

garym's picture
garym
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After playing last Wednesday, the weather turned and by Friday it was in the teens, windy, and we had 6" of snow on the ground, bummer.

Some of my friends and I set up a course and play ice golf in the winter when the conditions are right regardless of the temp. We play on the lake, shovel snow off the ice to make tees and greens, bore holes with an auger and actually have flag sticks. The problem is that usually by the time the ice is safe the snow is too deep, but once in awhile it works out. We set up a standard nine holes, winter rules of course, you're only allowed 2 clubs, as much beer as you can carry, power carts (snowmobiles) are not allowed, and sometimes we have to drill a hole through the ball to attach colored yarn to help find them in the snow, we lose very few. You're allowed to clear the snow around your ball for second, third, etc. shots. You'd be surprised how well you can hit it dressed in boots, gloves, and Carharts. You don't have to be nutz, but it helps.

Texas_wedge's picture
Texas_wedge
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No, Fox, apparently not. My Wife and I discussed the topic at length yesterday and she declared that I'm not nuts, just weird! She says I see the world about 3 degrees off the bearing other people have on it. (I have to admit there's a lot of supporting evidence. Coffee often makes me very sleepy; morphine (Morpheus - god of dreams) kept me awake and fired up so that I had to be careful not to let the euphoria lead me into addiction; electronic equipment sometimes goes haywire when I'm in contact, etc etc. I have come to understand why I took to Paloma Faith's song "Upside Down" so readily.

Of course, the uninitiated see all golfers as nuts and you've only to see Gary's tale above to see why. Gary, that's a great story - must be classifiable as an extreme sport! What a superb print your scene could make for clubhouse walls. It would tie in with the old Scottish tradition of curling by farmers on curling ponds. In fact, one of my parkland clubs, where I play in a winter league, actually has a curling pond beside the 18th fairway but, alas, it's not quite the size of your lake!! By the way, I guess the fairway behind you in your pic. is where you set the long-driving record? :)

Gallows humour is another way of coping isn't it? Fox's truck reminded me of my saying to my Wife, just after Dx, that I would be a bit later getting home because I was going to stop off to buy 3l. of paint and also some socks and she said 'Why don't you make it 1l. and forget about the socks!' . My GP told me that in years gone by doctors used to joke 'Well, don't buy an LP' [for younger board readers that was a "long-playing record" - a record was what we used to buy music on before CDs - oh I give up!]

foxhd's picture
foxhd
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My current oncologist told me it would be OK to buy green bananas! I didn't get it at first.

Texas_wedge's picture
Texas_wedge
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:-))

Texas_wedge's picture
Texas_wedge
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May be my last grin for a while! Left my GP 10 minutes ago - confirmed regained 1 1/2 k and blood samples perfect. However, we read parts of my path report for the first time and I probably won't buy any green bananas.

garym's picture
garym
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T,

I don't mean to pry, but you can't leave us hanging like that, what's up? Whatever it is let us help you with it, that's what friends are for.

Gary

rae_rae's picture
rae_rae
Posts: 267
Joined: Oct 2010

Path report not good? Or you don't like bananas? Keeping you in my prayers.
Rae

garym's picture
garym
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I played golf with my father in-law every Saturday morning for over twenty years, he passed from RCC almost 12 years ago. When they told me , in the ER, that they had found a mass in my kidney that they were pretty sure was RCC, I turned to my wife and said "I guess your dad must need a forth.", she'd have hit me if I didn't already have so many broken bones. Funny how normal people fail to see the humor at times, she does laugh about it now though, says she wanted to kill me at the time, huh?

foxhd's picture
foxhd
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T-W? Compose yourself and let it all hang out. You get at least one mulligan.

Texas_wedge's picture
Texas_wedge
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Now that's what I wanted to hear, Fox!

Gary, sorry, I wasn't intending my post to be so arcane, it's just that as soon as I'd posted I began a few hours of intensive research and have only now just returned here. I'm waiting at the end of the 'phone for further developments and don't want to let my nearest and dearest know until I've got a fuller picture. My Wife doesn't need any additional bad news right now. I'm hoping my appearance of robust good health, coupled with the torrents of verbiage I subject you guys to, will have put her off any inclination to read what I say here!

Good news was that I'm regaining a little weight and my blood samples were perfect. Bad news, my path report (GP went online to hospital to get it after our customary chat about golf) sounds somewhat like Rae's but rather less promising. He read a few bits of it out to me. We'll see what recommendations may be made for further treatment. I'm a fighter and within two minutes of starting to drive away from the anticipated 10 minute 'You're cured' appointment, Fox came to mind and I said out loud to myself "I'm gonna beat this rap". There's plenty of support on this forum and I've got too much living to do to quit prematurely.

garym's picture
garym
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T,

Understood. Ya can't let one bad shot ruin your whole round because the next one might go straight in the hole. You do have much more living to do!!

Aces to you,

Gary

Texas_wedge's picture
Texas_wedge
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Thanks Gary - right on.
Rae, I actually love bananas. I may be wanting to compare notes with you a bit more about golf etc. Pooling information never does any harm.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

There's always MDX-1106!.....by the way, RCC by nature has a poor prognosis. So don't go by that. Until 5-10 years post op, I don't think anyone here has been told that they have been cured. That's why we keep getting repeat scans. But just to be on the safe side, get an early tee time.

garym's picture
garym
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I should think a Fighting Scot would be a welcome addition to this club!!

Texas_wedge's picture
Texas_wedge
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I love this country Gary and have now lived most of my life here but (and keep it quiet please!) I'm actually a Londoner, albeit of Welsh and Irish ancestry!

Texas_wedge's picture
Texas_wedge
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:-)

Sm4pack's picture
Sm4pack
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Just got done following this thread. Praying you keep smiling and keep hitting them long and straight. Stay vigilant and active my friend.

Scott

Texas_wedge's picture
Texas_wedge
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Thanks Scott and it's good to see you doing so well and that you're already giving a lot back to this board - long may you continue to do both those things.

rae_rae's picture
rae_rae
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So this could be a really big furball. Stay positive! By the way, the weekend after I had my "recurrence " diagnosis, my friends and coworkers went into my office with a hundred sticky notes and "bequeathed " all of my stuff (pens, paper, computer, shoes, dental floss- everything) to everyone at the resort. It's great friends like that and the ones you find here that help us through the crazy days.
Rae

rae_rae's picture
rae_rae
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So this could be a really big furball. Stay positive! By the way, the weekend after I had my "recurrence " diagnosis, my friends and coworkers went into my office with a hundred sticky notes and "bequeathed " all of my stuff (pens, paper, computer, shoes, dental floss- everything) to everyone at the resort. It's great friends like that and the ones you find here that help us through the crazy days.
Rae

garym's picture
garym
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LOL

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

This is the MDX-1106 thread and I want to wish Foxy good news in the results tomorrow.

I ordered the MAARS guided imagery program a week ago and I'm itching for it to arrive so that I can get stuck into it. Meanwhile I already have an image I want to share. It's of a cancer survivorship graph.

Way over to the right, of a heavily right-skewed distribution, sitting on the asymptote, is a fox; even his brush is n SDs above the mean and his snout is jammed right into the narrowest part of the tail (of the graph) and he's gazing intently into the distant future.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Will find out more in the am. I am going to wear big sunglasses to my appointment because my future is gonna be so BRIGHT!!

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

I expect to see the glow all the way from Michigan. GOOD LUCK!!!

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

..Good thing I copied this, cuz I lost it in submitting it.. Infusion #3 complete. Now the good and the bad. The good. Lung tumors are smaller!..YEA!!..blood work is good!..Yea!!..Now the bad...new lesions in my illiac crest and vertebrae...Boo.....Looked at my pet scans and they were lit up like a Christmas tree... Wrong glow Gary... Weren't there 6 weeks ago. Kind of explains the pain I've had in my hip, chest and back...but, It may also be the massive inflammatory effect from the MDX going nuts on some renegade cells. I'll have another infusion every 3 weeks. Next cat scan is in 6 weeks...I may just wait a little longer before I buy new tires for my truck.

So, What's new with you guys?

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

Hell, buy the tires Fox - you'll outlast them. The MDX is relentlessly hunting down the enemy wherever it finds them! It's got the lung tumours under control and now it's focusing its sights on other targets.

My news: not only have I bought green bananas, I traded my car up for a newer model this afternoon. Also played 15 holes at Carnoustie - took just over 2 hours - strong wind blowing and course deserted. Went out on my own and played 14-16 in the dark so couldn't finish all 18. A good number of single putts but I'm not inclined to reveal my other scoring. Conditions difficult and first round since my op. are my excuses (I subscribe to Gary McCord's philosophy that you always have to find anything other than yourself to blame!).

You and MDX are the team that's going to win the gold.

By the way, have you tried the other tip - of hitting the back button in your browser - you may find you've not actually lost your post and can keep repeating the exercise [that word again - sorry Limelife50 :) ] until it goes in ok.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Reading back a little you mention being of english and welsh with irish thrown in there. My mother was welsh and father irish. Her name was Welsh, his Driscoll. Her side migrated to Pittsburgh to work in the steel industry. His side came through Canada as fur traders.

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

How interesting - we're a couple of mongrels then. Talking of Canada, a soldier on my paternal grandfather's line seems to have led Wolfe's squad in the scaling of the Heights of Abraham but try as I may I don't seem to be able to unearth any contemporary accounts to verify this.

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

How interesting - we're a couple of mongrels then. Talking of Canada, a soldier on my paternal grandfather's line seems to have led Wolfe's squad in the scaling of the Heights of Abraham but try as I may I don't seem to be able to unearth any contemporary accounts to verify this.

Just heard my urologist has rescheduled and I'll be seeing him a week earlier - suits me fine - might as well get the news sooner so I can plan accordingly.

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

Unfortunately I have a small family and know little else about anyone else that fell from the tree. I may be a Fox now but that was because my father was adopted and we lost the Driscoll name. Ma Fox had cousins named Wolf. Gee, who'd be surprised by that?

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

Logic tells me that if it is working in one area it is working in all and these new bursts are just an extension of the MDX search and destroy mission. I don't believe that this is the last set of tires you will need, go for it. Can you decipher this;

FLUAWLH,

Gary

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