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MDX, part 3

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Here's the refresher. Cancer diagnosis last March. (It will be one year for me next week.) Left radical nephrectomy. By October mets in lungs and liver, and lymph nodes. Qualified for MDX-1106 clinical trial after multiple scans, blood work and biopsies. Recieved first infusion in December, and every three weeks. Scans in January showed mets in pelvis and spine. Developed severe pain. Pain gone in February. Had scans 3/5. Results and 5th infusion today, 3/7. Before my Dr. said anything, she walked in with open arms and gave me a big hug! Scan results show a couple tumors stable. Some reduced 30-50%. Some gone. Bone lesions inactive and healing! I am pumped!!...What cha think?...YA HOO!!!!!!

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Such GREAT news! I am happy to hear your positive results. With your positive attitude and the MDX, how can you go wrong. Sending a big happy hug your way!
Rae

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Fox, you may turn me into a believer. I am afraid to admit, but, I think your post gives me hope, while I make my decision. 3 days, I have seen 3 oncologists, I am exhausted of thinking, and hearing "we don't know" while they ask me to make a decision.

I am sending my wishes that things continue to get better for you.

Raj.

DogRescuer's picture
DogRescuer
Posts: 50
Joined: Feb 2012

Reading your wonderful news, I'm doin' the HAPPY dance--sore as I am. Fox, I truly believe that all the positive vibes you've given the rest of us in the past is coming right back at ya! Somehow all the good you've given is reflecting off of us and returning to you. You're great!

Celebrate!!

jam66
Posts: 55
Joined: Jun 2011

So happy for you! I love hearing news like this!

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Great news ! I pray that it continues to go well and every future scan shows improvement until you are cured!

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

YES !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

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

My wife just asked what the heck I'm crying about...WAY TO GO FOXY!!!!!!

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I am so incredibly excited for you - and for future MRCC people! You and others doing this clinical trial are really paving the way! I applaud you - and thank you - besides doing a HAPPY DANCE and smiling until my face hurts!!!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Thank you ALL!!!!

FLY

FOX LOVES YOU!!!

Lets keep sharing the Karma. I've a little extra to pass around.

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

You forgot to mention that your extra Karma doubles as a flashlight or battery charger too.

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

I do not need night lights in my house. But my wife sleeps with a pillow over her eyes. She has considered putting a pillow over my head though.

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

With the added glow of triumph, Fox is now so radiant that in some parts of the world he might be regarded as an avatar (in the Hindu sense, not the computing one!) and in many cultures he could be hailed as the sun god.

Here, he's simply an inspiration (and a source of some great funny lines).

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

I've decided to get the new tires for my truck. LOL.

NanaLou
Posts: 68
Joined: Oct 2011

That is wonderful news. Keep on fightin and go ahead and get those new tires!!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

..My wife mentioned, "Can you imagine if they gave the MDX to people prior to mets becoming evident? Or even if it was standard protocol after surgery? Maybe even instead of surgery for small tumors?" I hope my progress helps make that possible to others in the near future.

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

Isn't that what being a pioneer is all about? If the results for the others on this trial are anything like yours "standard protocol = magic bullet" could be here very soon. I swear I can hear the people I've lost to this devil cheering for MDX. Put the best tires on that truck that money can buy, looks like you'll be around long enough to wear'em to the cords.

Olsera's picture
Olsera
Posts: 38
Joined: Dec 2011

Excellent news I am very happy for you.

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

Fox is a beacon metaphorically and now literally too.

We stopped for soup at the half-way house at golf this morning. Served by a foxy young lady - positively radiant in fact. I couldn't think whom she put me in mind of and then it struck me that she looked 'as happy as Larry'.

I'm continuing to hope that MDX-1106 might even prove effective for us non-clear-cell types as well. (Still can't help thinking it must be the name of a Honda bike though.) Roll on the trial results.

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

T,

Perhaps I've missed it, but are the results in yet on your tests?

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

On the ball as ever Gary. Yes, I'm afraid they are. I'm now in the metastatic camp and moving to plan B. New tumour in lower right abdomen. After imminent round the table discussion with input from a renal oncologist and others I'll get perceived options and recommendations. We'll probably also procure an expert second opinion in Harley St. since this is a decidedly critical juncture for me.

Such a strange illness - I was hoping to get back to being able to row 10k and reckoned to aim for getting under 50 mins. Did 10k yesterday in under 45 mins. and didn't feel any effects today while playing Carnoustie in a gale. Such a disconnect between the diagnostic and the experiential aspects - it's totally discombobulating.

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

T,

Certainly not what we had hoped to hear, but your own research has prepared you well. In fact, you are perhaps the most physically and mentally prepared person that I know of in this fight. Nothing I can say that you don't already know, but in the words of Yogi Berra "It ain't over till its over!", I'll bet Jerry White would agree. Sounds like you are formulating a plan, you know what I like to say, ATTACK WITH EXTREME PREJUDICE!! For what its worth, from my perspective your odds of winning are much better than most. Please accept my virtual hug, wish I could offer it in person.

Your friend and brother in battle,

Gary

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

Thanks Gary, very much appreciated.

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi TW,

Sorry to hear that but I know you are more than capable of overcoming this bump. Think of it as a double bogey on the first hole only to come back and shoot under par on the next 17. You are in my prayers.

Health and happiness to all,
Wayne

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

Thanks Wayne. Started with a double bogey on the first this morning, as it happens, but unfortunately the rest of your scenario didn't ensue. I was buttonholed by a club secretary afterwards who had good news about an action going to the high court on which I had been giving help so the bad score on the course was soon forgotten, like the CT results.

However, this is a different game, where I shall aim to match Fox's achievements.

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

HELL! This is a kick in the head, isn't it! I know you're strong and I know you're a fighter, but I think you deserve to take a little time to feel crummy.

I had stereotactic radiosurgery to my pancreatic tumors (RCC) - and had such high hopes for at least some response. When the next set of scans revealed continued growth instead of shrinkage (and a new liver tumor), I had a melt-down. I've had this beast of a disease for 11 years (on/off/on/off/on) - and this was my first melt-down. I figured I had a right. It lasted about 24 hours and then I was back to my usual optimistic - 'it is what it is' - one day at a time - attitude.

My prayers are with you - hoping that Plan B is magic!

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

LB, these little things are sent to try us and some are a little bit more trying than others. Prayers gratefully received. Over, but not out!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

TW, sometimes local club rules allow for opportunities not afforded in normal play. I can think of no one better than you to interpret available options. Honestly, I think that you will provide insights to your Drs. that they haven't thought of. We'll see you at the 19th hole.And not soon. No doubt about it.

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009

TW, my plan B became plan A long time ago.

For those of us in RCC stage IV camp, recurrence is the name of the game. I already aimed my target at preparing for recurrence instead of preventing recurrence years ago. Relax and keep on breathing, eat balanced diet, drink properly, get rid of your constipation, don’t hold your water, sleep well and most importantly exercise as much as you can. All these are what I do everyday, 356 days a year.

When recurrence shows up we need to have our strength, stamina and immunity at the top level to deal with it. Every time before my regular checkup I prepare myself like prepare running a marathon. Long term and everyday exercise will start to restructure your physical body to be a stronger fighter no mater what your age is now.

This game is not over until our life is over.

Jon

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

Tex,

It follows no rhyme or reason, and most dealing with this horrible disease find themselves in a glazed eye state wondering what critical component the medical world is missing in this puzzle. You feel it is right there and you should be able to touch it/grab it. It's astonishing that you are in the metastatic camp now despite the level of your physical activity. Your doctors are fortunate to have you as a patient as you'll undoubtedly become a dynamic patient/doctor(s) team and learn from each other.

You instill optimism in others and that optimism is coming back to you by the many you have positively impacted. Good luck in taking the next step.

Fox - WOO HOO! Congratulations.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

TX, I don't hear any fat lady singing, so you just keep on fighting, because it ain't over by a long shot! You are another person here that I feel is very deserving of some great news. I am continually amazed at all the time, effort and care that you give to others on top of everything that you are going through yourself. I am sending up extra prayers for you my friend.

Blessings,
Lisa

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

Thanks Lisa - feeling the benefit already.

adobe
Posts: 72
Joined: Feb 2012

I am pumped also for you, put on your dancing shoes, and I have mine on for you!! You give all of us another shot on the stage. Remember you might have to dance at a wedding!

ADOBE

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

My gosh that is just fabulous. Now you can ride your bike in comfort. I tried to change my photo to me on my bike but because I am so tech impaired I can't get it to work LOL. Anyway, keep up the continued status, it gives us such hope!!

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Thanks again all! Jon, I completely buy into your proactive fitness plan. I have told everyone that when I die, I'll be in the best shape of my life!LOL.
Myboys2, Looks like you're hanging out at a biker bar. Unless thats your living room! I was riding in comfort after maybe 3 weeks. Had to get in shape. Laconia was coming up...Had a friend from New Brunswick coming to Laconia. She had kidney surgery a couple months before me. Her Dr. would not let her ride yet. She was bummed.

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

Was she really?! The things you bikers get up to! I hope her doctor wasn't involved.

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

Fox, Jon, Alice, thanks for all the kind words. A bit of imagination may be in order in addition to the established prescription for healthy living. I'll be asking about cryo, hyperthermia, HIFU etc. Unfortunately MDX-1106 has been ruled out (so far at least). Raj pointed me to an interesting brief YouTube video with one of his experts - Dr. Dutcher - which makes me wonder whether IL2 will be suggested (I don't much fancy poisoning a perfectly good immune system, even if it did let RCC slip through for maybe 20 years or more!).

Jon, re your posting, I'm intrigued to know what you get up to on the other nine days of the year (ten this year, of course). Your life-style template is identical to mine. I was reading a bit of a classic textbook on nutrition and dietetics earlier today - a chapter on cancer and diet - and it expressed the view that physical inactivity in the last century is to blame for a large proportion of the upsurge in cancer numbers. All the evidence suggests that exercise is more important than most folks realise when it comes to cancer.

Took another couple of seconds off my recent best (post-op) time for rowing 5,000 m yesterday and had a 5&3 win in golf winter league today, against a couple of big hitters. Like Fox, when I gonna go, gonna go healthy.

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

Fox, Jon, Alice, thanks for all the kind words. A bit of imagination may be in order in addition to the established prescription for healthy living. I'll be asking about cryo, hyperthermia, HIFU etc. Unfortunately MDX-1106 has been ruled out (so far at least). Raj pointed me to an interesting brief YouTube video with one of his experts - Dr. Dutcher - which makes me wonder whether IL2 will be suggested (I don't much fancy poisoning a perfectly good immune system, even if it did let RCC slip through for maybe 20 years or more!).

Jon, re your posting, I'm intrigued to know what you get up to on the other nine days of the year (ten this year, of course). Your life-style template is identical to mine. I was reading a bit of a classic textbook on nutrition and dietetics earlier today - a chapter on cancer and diet - and it expressed the view that physical inactivity in the last century is to blame for a large proportion of the upsurge in cancer numbers. All the evidence suggests that exercise is more important than most folks realise when it comes to cancer.

Took another couple of seconds off my recent best (post-op) time for rowing 5,000 m yesterday and had a 5&3 win in golf winter league today, against a couple of big hitters. Like Fox, when I gonna go, gonna go super-fit.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Fox, sorry I am late with the congrats. I've had an awful time accessing this site lately. Anyway, I am SO SO happy for your results. I agree with everyone else in that your time, caring, kindness and help that you have so freely given to all of us is coming back to you tenfold. I have tears in my eyes I am so happy for you. Keeping you in my prayers.

Blessings,
Lisa

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