MDX-1106 part 5

foxhd
foxhd Member Posts: 3,181 Member
in Kidney Cancer #1
Well here we go. I was very anxious going to treatment today. Afraid that I was no longer responding because of the pain I've had in my back and ribs.....First a quick refresher...Left radical nephrectomy March 2011. By October mets in lungs, liver lymph nodes. Told I might not make it to spring 2012. I started being screened for the MDX-1106 trial drug which was showing great promise. But my cancer now was in my spine and pelvis by this point. Tremendous pain and living on percocets. Then the miracle began. I qualified for the study. I began infusions every three weeks at the maximum dosage they could give. And I started getting BETTER!!!!!!!!

Todays scan results now state that the dozen or so lung mets I had are GONE! Liver is also clear! 2 chest nodes continue to shrink!!!! Pelvis and spine have healed. The bad news is that I have evidence of a couple new lesions in my spine, sternum and ribs.

But I tolerated the infusion well today and my oncologist thinks that the osseous lesions are inflammed from the drug and they will improve also. I am feeling good about that. Pain is not holding me back from exercise, running or golfing. In fact, I intend to take a 700-800 mile bike trip this weekend. .......So, is life good or what?

Thanks to all for everyones support and faith that I will continue to do well. The worst part is knowing that not everyone else can have my good fortune. So, I am going to continue to improve and help pave the way for everyones cure.

FOX LOVES YOU!!!!!!!!!!!!!!!!!!

Comments

  • Raine22
    Raine22 Member Posts: 33
    #2
    Part 5
    That is amazing that your program is working so well and I'm sure it will continue to do so!! Enjoy your bike trip!!
    Lorraine
  • Limelife50
    Limelife50 Member Posts: 476
    #3
    No Pain No Gain
    Thanks for sharing the news Fox ,looks as tho you just took 3 steps forward and maybe one step back but i am sure you are going to reach your ultimate goal and that would be eliminating every last cancer cell out of your body P.S Enjoy your bike trip,i have to say one thing before i go and it has to do with the slowest web site i know of and that is CSN,this web site almost pisses me off it is so slow and makes me think of lighting up a cigerette so as to calm me down,i am never going to smoke again but the thought does come to mind at times.Hey CSN thnx for the wonderfull web site,i just wish it flowed a little better.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #4
    Limelife50 said:

    No Pain No Gain
    Thanks for sharing the news Fox ,looks as tho you just took 3 steps forward and maybe one step back but i am sure you are going to reach your ultimate goal and that would be eliminating every last cancer cell out of your body P.S Enjoy your bike trip,i have to say one thing before i go and it has to do with the slowest web site i know of and that is CSN,this web site almost pisses me off it is so slow and makes me think of lighting up a cigerette so as to calm me down,i am never going to smoke again but the thought does come to mind at times.Hey CSN thnx for the wonderfull web site,i just wish it flowed a little better.

    Some pain, much gain
    I, for one, am glad that you keep a good balance of acknowledging that it's not just a walk in a rose garden for you, Fox. I reckon it's important that you show it warts and all. People need to understand what you go through and not have a false picture of the terrific progress you are making. It's being hard won on the part of both medical science and you personally - you're fighting every foot of the way and no one is more deserving of a fine outcome. You're certainly giving great hope to a whole lot of people. The time-buying motif is ever-stronger, with new treatments (e.g. G202) in prospect.


    Mike, the blip re pics and the CSN/Drupal banner may be signs that the CSN tech. team is working at trying to improve it right now. Let's hope so - as you've recognised, it's a great site but can be better still.
  • garym
    garym Member Posts: 1,647
    #5
    Texas_wedge said:

    Some pain, much gain
    I, for one, am glad that you keep a good balance of acknowledging that it's not just a walk in a rose garden for you, Fox. I reckon it's important that you show it warts and all. People need to understand what you go through and not have a false picture of the terrific progress you are making. It's being hard won on the part of both medical science and you personally - you're fighting every foot of the way and no one is more deserving of a fine outcome. You're certainly giving great hope to a whole lot of people. The time-buying motif is ever-stronger, with new treatments (e.g. G202) in prospect.


    Mike, the blip re pics and the CSN/Drupal banner may be signs that the CSN tech. team is working at trying to improve it right now. Let's hope so - as you've recognised, it's a great site but can be better still.

    RCC OUT FOXED!!!
    Ditto on everything Tex said, now aren't you glad you sprung for those new tires?

    I posted this earlier on Alice's thread, but it would seem to fit here as well:

    "Beginnings are scary and endings are usually sad,
    but it's the middle that counts the most"
    Laugh when you can, apologize when you should,
    and let go of what you can't change, Play hard, forgive
    quickly, take chances, give everything and have NO regrets
    ....Life is too short to be anything but happy!

    Enjoy the trip and your ride,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    garym said:

    RCC OUT FOXED!!!
    Ditto on everything Tex said, now aren't you glad you sprung for those new tires?

    I posted this earlier on Alice's thread, but it would seem to fit here as well:

    "Beginnings are scary and endings are usually sad,
    but it's the middle that counts the most"
    Laugh when you can, apologize when you should,
    and let go of what you can't change, Play hard, forgive
    quickly, take chances, give everything and have NO regrets
    ....Life is too short to be anything but happy!

    Enjoy the trip and your ride,

    Gary

    Thanks all
    Thanks all for the support and well wishes! My bike is packed and I'm out of here! See you all sunday or monday!!!!!!
    FOX LOVES Y'ALL!!!!!
  • DMike
    DMike Member Posts: 259
    #7
    foxhd said:

    Thanks all
    Thanks all for the support and well wishes! My bike is packed and I'm out of here! See you all sunday or monday!!!!!!
    FOX LOVES Y'ALL!!!!!

    Congrats
    Hi Fox,
    I'm happy for you on the good news and pulling for you on the challenges. I know you'll beat it. You're our resident RCC Badass! Enjoy your trip.
    --David
  • JackieP125
    JackieP125 Member Posts: 56
    #8
    DMike said:

    Congrats
    Hi Fox,
    I'm happy for you on the good news and pulling for you on the challenges. I know you'll beat it. You're our resident RCC Badass! Enjoy your trip.
    --David

    BIKE RIDE
    Here's wishing you a nice long ride with good weather. All sunshine and no rain. Don't think about RCC just enjoy the wind in your face!!!!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #9
    JackieP125 said:

    BIKE RIDE
    Here's wishing you a nice long ride with good weather. All sunshine and no rain. Don't think about RCC just enjoy the wind in your face!!!!

    Good wishes
    My Daughter asks me from time to time (we're 500m apart) how you're doing. I copied her your latest report which she was delighted to read and she asked me to give you her regards.

    Watch those potholes and I hope you packed plenty of outrageous t-shirts.
  • pjune127
    pjune127 Member Posts: 127
    #10
    All smiles for you!
    You rock, Fox!
  • alice124
    alice124 Member Posts: 896 Member
    #11
    Progress
    You continue to be our BOY WONDER on this Board. People might question the Boy part but you think young, you act young, you feel young, you ride young. BOY it stays!

    Hope you make it back from your latest RIDE in one piece.

    Soulnergy with you always,

    Alice
  • foxhd
    foxhd Member Posts: 3,181 Member
    #12
    alice124 said:

    Progress
    You continue to be our BOY WONDER on this Board. People might question the Boy part but you think young, you act young, you feel young, you ride young. BOY it stays!

    Hope you make it back from your latest RIDE in one piece.

    Soulnergy with you always,

    Alice

    Thanks again all!
    Just got home from about 800 miles through some of New England. Camped with about 30 friends at a small biker rally at the Canadian border. Had a GREAT time. I'll admit to being worried about my back and ribs hurting too much. But all was well. As soon as I got home I got huge hugs from my grandaughters and wife. The next most important thing was to check up on everyone and make sure all is good. Remember Fox loves you!!!.
  • alice124
    alice124 Member Posts: 896 Member
    #13
    foxhd said:

    Thanks again all!
    Just got home from about 800 miles through some of New England. Camped with about 30 friends at a small biker rally at the Canadian border. Had a GREAT time. I'll admit to being worried about my back and ribs hurting too much. But all was well. As soon as I got home I got huge hugs from my grandaughters and wife. The next most important thing was to check up on everyone and make sure all is good. Remember Fox loves you!!!.

    quick question
    Fox,

    Are you still on the MDX maximum dose--10 mg? I know you had a temporary respiratory setback and didn't know if the dosage stayed the same.

    John's dosage is 2 mg/kg. A couple of Phase I/b trials are getting ready to start. One will involve various grade/stage kidney cancers. The only requirement for this particular trial is virgin treatment to date.

    She stated MDX dosage has shown effectiveness as low as 0.3mg and as high as 10 mg. While the dosage for the upcoming trials is not official/final, she expects the trials to be at 2mg/kg or 3mg/kg.
  • foxhd
    foxhd Member Posts: 3,181 Member
    #14
    alice124 said:

    quick question
    Fox,

    Are you still on the MDX maximum dose--10 mg? I know you had a temporary respiratory setback and didn't know if the dosage stayed the same.

    John's dosage is 2 mg/kg. A couple of Phase I/b trials are getting ready to start. One will involve various grade/stage kidney cancers. The only requirement for this particular trial is virgin treatment to date.

    She stated MDX dosage has shown effectiveness as low as 0.3mg and as high as 10 mg. While the dosage for the upcoming trials is not official/final, she expects the trials to be at 2mg/kg or 3mg/kg.

    dosage
    Alice, yes I will remain on 10mg/kg as long as I am in the trial. I asked about having it reduced but that is not in the protocol. My doc says that I've had way more drug than most. Even if I was to stop now, it would continue to affect the t-cells for some time to come. They used the term "treatment naive" in qualifieing for the study. My feeling is that they will find that a low dose will be effective. I do fear what the continued use of this drug will do especially at this dose. I've been told that I could be on this for up to 4 years.
  • tacyarts
    tacyarts Member Posts: 73
    #15
    foxhd said:

    dosage
    Alice, yes I will remain on 10mg/kg as long as I am in the trial. I asked about having it reduced but that is not in the protocol. My doc says that I've had way more drug than most. Even if I was to stop now, it would continue to affect the t-cells for some time to come. They used the term "treatment naive" in qualifieing for the study. My feeling is that they will find that a low dose will be effective. I do fear what the continued use of this drug will do especially at this dose. I've been told that I could be on this for up to 4 years.

    Dosage
    I start the trial in 2 weeks and will be 2 mg of mdx and 800 mgs sutent. How are people expected to afford the sutent. My insurance pays 80% and my cut is still $3300 per month. That's twice my house payment.
  • garym
    garym Member Posts: 1,647
    #16
    tacyarts said:

    Dosage
    I start the trial in 2 weeks and will be 2 mg of mdx and 800 mgs sutent. How are people expected to afford the sutent. My insurance pays 80% and my cut is still $3300 per month. That's twice my house payment.

    MDX...
    tacyarts,

    May you experience the same success as fox and Alice & John!!! Hopefully this is on the path to our "magic bullet" and it will affordable some day to all that need it thanks to the pioneers like you guys.

    You all rock,

    Gary
  • alice124
    alice124 Member Posts: 896 Member
    #17
    foxhd said:

    dosage
    Alice, yes I will remain on 10mg/kg as long as I am in the trial. I asked about having it reduced but that is not in the protocol. My doc says that I've had way more drug than most. Even if I was to stop now, it would continue to affect the t-cells for some time to come. They used the term "treatment naive" in qualifieing for the study. My feeling is that they will find that a low dose will be effective. I do fear what the continued use of this drug will do especially at this dose. I've been told that I could be on this for up to 4 years.

    dosage
    Hi Fox - You are probably right about dosage, but John got a new consent form in conjunction with the MDX this morning. The research nurse said that--even though it doesn't directly effect John--he still must sign it. It is reducing the maximum dosage of MDX to 5 mg rather than 10 mg.

    Just an fyi.
  • tacyarts
    tacyarts Member Posts: 73
    #18
    garym said:

    MDX...
    tacyarts,

    May you experience the same success as fox and Alice & John!!! Hopefully this is on the path to our "magic bullet" and it will affordable some day to all that need it thanks to the pioneers like you guys.

    You all rock,

    Gary

    Thanks
    I'll sure take the same results as fox. I just need a little good news to build my moral. I'm excited to have the opportunity to take this life changing drug.
  • alice124
    alice124 Member Posts: 896 Member
    #19
    tacyarts said:

    Thanks
    I'll sure take the same results as fox. I just need a little good news to build my moral. I'm excited to have the opportunity to take this life changing drug.

    Winners
    No such thing as too many winners in this group. Welcome!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #20
    alice124 said:

    dosage
    Hi Fox - You are probably right about dosage, but John got a new consent form in conjunction with the MDX this morning. The research nurse said that--even though it doesn't directly effect John--he still must sign it. It is reducing the maximum dosage of MDX to 5 mg rather than 10 mg.

    Just an fyi.

    interesting.
    I go back on the first. I will ask again. Thank You.

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