MDX-1106, part three

foxhd
foxhd Member Posts: 3,181 Member
OK. Here we go. First of all, excuse me as I am getting a bit emotional. I do know that I am going to cry tonite. Second of all, if I begin to slur my words it's because some one told me to have a couple beers to celebrate. So, I took my own advice!

Went for 7th infusion today of 10 mg/per kilogram of body weight of MDX-1106. Or Anti PD1. But first was the Doctor visit.

To rehash for many newer members, I had a left radical nephrectomy for stage 3 cancer in March 2011. Recovered well last summer with negative scans. In October 2011 found out I had numerous tumors in my lungs, liver, and chest lymph nodes. My local oncologist said she could do nothing for me. Maybe I would not make through March 2012. I needed to go to a bigger cancer center. A friend pulled some strings and got me to see a top rated oncologist at a bigger center. Bottom line is he said "Good Luck". He agreed that if I was his own family member then Interleuken 2 was worth the chance. But they didn't do it!

So I got to Yale in a bit of a panic. Yes. They could treat me with the Interleuken but......Maybe, I would like to hear about a trial drug of MDX-1106. This drug blocks the programmed die off of T-cells in our immune system allowing the T-cells to attack cancer cells. Specifically Clear cell renal cancer and melanomas....There were to be a limited number of candidates accepted into this trial. But I had to meet all the criteria. I really liked the idea and went for it.

Many weeks of blood work, genetic testing, ct scans, pet scans, bone scans, brain scans and biopsies took place. Then I recieved the news. My first infusion was to begin in December then every 3 weeks there after. Ct scans every 6 weeks.

By the end of December and in January, the cancer now had spread to my pelvis and spine. Very painful. I was needing percocets to get around the house.

But my pain started going away. I returned to exercise and running. I continued with treatment and my scans began to show healing in my bones. My lung and liver tumors were shrinking. Some are GONE!! I am feeling GREAT!!

So Today I go in for infusion #7. Pre-treatment, I meet with my Doctor to review my latest scans. Was I anxious?..Just lay it on me Doc. She says ,"So how are you?" I told her I'm excellent unless she tells me otherwise. She smiles and says," Some tumors are only half to a third of what they were. Some are gone."I am getting excellent response from the drug. Side effects are minimal. Not even worth mentioning.

I am getting better!!!!!!! How do I express how thankful and fortunate I am?

I want to thank all on this board who share their stories, support and love. We are going to win this challenge!

Now excuse me while I cry a little and finish my beer.
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Comments

  • rae_rae
    rae_rae Member Posts: 300 Member
    Yay!!!!
    Absolutely the best news! Tips a celebratory beer right along with you! I am deeply happy for you Fox! This gives so much hope to many!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    rae_rae said:

    Yay!!!!
    Absolutely the best news! Tips a celebratory beer right along with you! I am deeply happy for you Fox! This gives so much hope to many!

    Yay!!!!YAY!!!!
    Have another one with me.

    We all know you're special but have you heard whether there are others doing as well as you?

    It's no more than I expected but even so I'm going to sleep much sounder tonight after such great news.
  • foxhd
    foxhd Member Posts: 3,181 Member

    Yay!!!!YAY!!!!
    Have another one with me.

    We all know you're special but have you heard whether there are others doing as well as you?

    It's no more than I expected but even so I'm going to sleep much sounder tonight after such great news.

    Others
    Yes others are doing well. In the earlier phase 1 study some have been off the drug and have had continued response. I was told that one fellow had decided to opt out of the trial because of the committment. The doc reconvinced him to stay and he is now in full recovery.
  • One Lucky Girl
    One Lucky Girl Member Posts: 68
    Amazing journey
    Fox,

    Your story is absolutely incredible. I am SO happy that you are getting such amazing results with MDX. I know it gives hope to a lot of people here and I wish you everything good on your road to recovery! Big hug & kiss.
  • renal scare 57
    renal scare 57 Member Posts: 16

    Amazing journey
    Fox,

    Your story is absolutely incredible. I am SO happy that you are getting such amazing results with MDX. I know it gives hope to a lot of people here and I wish you everything good on your road to recovery! Big hug & kiss.

    mdx-1106
    Fox,

    This why i like this site just when i think im losin my battle someone just says something at the right time to click the lightbulb on to start me rollin again. Thanks for lettin us know how good you done on that drug i do believe im callin the doctor today and askin for it. The only thing it can do it help cure me lol. So i dont see the harm in him turning me down, but Fox I really glad you are doing good. please continue with the updates.
    Have a blessed day
  • garym
    garym Member Posts: 1,647
    Way to roll foxy!!!
    Its probably a combination of MDX and green bananas, make sure they mention that in the studies.
  • littledarlin
    littledarlin Member Posts: 102
    Congrats!
    What a amazing journey. You fought hard for a long long time and you are winning. This is such great news and gives us all hope out here..Thanks so much for sharing your story and all of this valuable info with us..I am keeping a notebook of all the treatments that have helped others here and that might help me too. Congrats to you Fox and thanks for helping us too..

    LD
  • DogRescuer
    DogRescuer Member Posts: 52 Member
    garym said:

    Way to roll foxy!!!
    Its probably a combination of MDX and green bananas, make sure they mention that in the studies.

    It's the beer
    Nah...i don't think it was the green bannanas. It was definitely the combo of beer and MDX! Congrats! Celebrate long and hard!

    You've been so supportive of others, it's karma coming back at ya.
  • foxhd
    foxhd Member Posts: 3,181 Member

    Congrats!
    What a amazing journey. You fought hard for a long long time and you are winning. This is such great news and gives us all hope out here..Thanks so much for sharing your story and all of this valuable info with us..I am keeping a notebook of all the treatments that have helped others here and that might help me too. Congrats to you Fox and thanks for helping us too..

    LD

    weird addendum
    Thanx all. Lets stick together. The support is a powerful tool. Here's the thing. I should be giddy as a school girl. But I am emotionally flat. I want to get better but I don't like being teased. Remaining cautiously optimistic. Maybe a feeling of guilt. I know just how unbelievably fortunate I am. But I can't stop thinking about all the people who are going to die because they don't have access to this drug. A friend mentioned to me, "Just think about how the doctors feel knowing they have something that can save thousands of lives and they can't use it." ..So, I better keep improving. I have to help prove that this drug is a wonder drug. Now the pressure of waiting 6 more weeks for my next scan. Remember, FLY.

    Fox Loves You!!!
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    foxhd said:

    weird addendum
    Thanx all. Lets stick together. The support is a powerful tool. Here's the thing. I should be giddy as a school girl. But I am emotionally flat. I want to get better but I don't like being teased. Remaining cautiously optimistic. Maybe a feeling of guilt. I know just how unbelievably fortunate I am. But I can't stop thinking about all the people who are going to die because they don't have access to this drug. A friend mentioned to me, "Just think about how the doctors feel knowing they have something that can save thousands of lives and they can't use it." ..So, I better keep improving. I have to help prove that this drug is a wonder drug. Now the pressure of waiting 6 more weeks for my next scan. Remember, FLY.

    Fox Loves You!!!

    survivor guilt
    Don't let such thoughts get to you. You've been doing everything you possibly could and thereby raising hope for countless others. Just stick to plan and get fully well asap and remember ELF.
  • alice124
    alice124 Member Posts: 896 Member
    wonderful news!
    Fox - I'm crying with you. And tonight--when I get home--John and I are going to click stemware filled with good wine and celebrate with you. (Sorry never liked beer.)

    John is tentatively scheduled to begin the MDX1106 and Votrient/Sutent trial on May 10. I only hope he has similar success.

    You do MDX1106 justice by educating so many on this board of its existence and successes. Thank you for exposing us to it and for being a BEAM of LIGHT on this board.
  • Limelife50
    Limelife50 Member Posts: 476
    Yeee haaaa
    I hope that was some expensive beer,I know leading up to path report you had a lot of thoughts going thru your mind from good to not so good and then you ended up with the most awesome news.Well a huge congrats from me !!!!,well enjoy and keep on rockin!!!
  • angec
    angec Member Posts: 924 Member
    I will celebrate for you!
    Fox.. That is FANTASTIC news! I am so very happy for you that I will drink a beer in your honor!! I HATE beer.. but my hubby tells me to have a Guiness. That is such wonderful news and thank you so much for stepping up to the plate and doing this trial. It could have gone either way for you and the fact that it went the RIGHT way is remarkable!! Please never feel guilty that you are doing well. Just think about the help you are rendering to others. If they see how marvelous this drug works they will have a lot to offer in regards to speeding up the drugs' availability for other people in other Countries. Continued success to you and please, keep smiling!! Big hugs coming your way. This should give faith to others (including you TW) that help is on the way. Never, ever give up!

    One question if you don't mind Fox. Is this chemo based?
  • foxhd
    foxhd Member Posts: 3,181 Member

    It's the beer
    Nah...i don't think it was the green bannanas. It was definitely the combo of beer and MDX! Congrats! Celebrate long and hard!

    You've been so supportive of others, it's karma coming back at ya.

    You're right
    Not likely the bananas. Much more likely the beer and MDX. Probably has to do with keeping my good kidney flushed.
  • foxhd
    foxhd Member Posts: 3,181 Member
    angec said:

    I will celebrate for you!
    Fox.. That is FANTASTIC news! I am so very happy for you that I will drink a beer in your honor!! I HATE beer.. but my hubby tells me to have a Guiness. That is such wonderful news and thank you so much for stepping up to the plate and doing this trial. It could have gone either way for you and the fact that it went the RIGHT way is remarkable!! Please never feel guilty that you are doing well. Just think about the help you are rendering to others. If they see how marvelous this drug works they will have a lot to offer in regards to speeding up the drugs' availability for other people in other Countries. Continued success to you and please, keep smiling!! Big hugs coming your way. This should give faith to others (including you TW) that help is on the way. Never, ever give up!

    One question if you don't mind Fox. Is this chemo based?

    Guilt
    I am crying like a baby... Literally... As I type this.... So many others deserve better than me. I have been a caregiver for 35+ years.I take care of others. I watch people who don't deserve to suffer pass away. Today, another classmate is in the obits. Such a sweet girl..... Even had lost 2 husbands!....Believe me, I never expected this to continue...So much to do. But I guess when you go , you don't have to worry anymore...A neighbor recently committed suicide because he couldn't deal with some bad decisions. He will never see his kids have grand children... He doesn't worry anymore... He even hugged me when I got a good report after my surgery....I'm rambling and sorry. But I can share my random thoughts and emotions here....More to come.

    Fly.
  • foxhd
    foxhd Member Posts: 3,181 Member
    angec said:

    I will celebrate for you!
    Fox.. That is FANTASTIC news! I am so very happy for you that I will drink a beer in your honor!! I HATE beer.. but my hubby tells me to have a Guiness. That is such wonderful news and thank you so much for stepping up to the plate and doing this trial. It could have gone either way for you and the fact that it went the RIGHT way is remarkable!! Please never feel guilty that you are doing well. Just think about the help you are rendering to others. If they see how marvelous this drug works they will have a lot to offer in regards to speeding up the drugs' availability for other people in other Countries. Continued success to you and please, keep smiling!! Big hugs coming your way. This should give faith to others (including you TW) that help is on the way. Never, ever give up!

    One question if you don't mind Fox. Is this chemo based?

    Chemo based
    No. It is not chemo based in a typical sense. MDX-1106 is a monoclonal antibody. I believe it binds to the molecule that triggers the die off of T-cells. Therefore allowing them to persue the cancer cells. It then eliminates them.......How far can this go?
  • foxhd
    foxhd Member Posts: 3,181 Member
    foxhd said:

    Chemo based
    No. It is not chemo based in a typical sense. MDX-1106 is a monoclonal antibody. I believe it binds to the molecule that triggers the die off of T-cells. Therefore allowing them to persue the cancer cells. It then eliminates them.......How far can this go?

    OK here's the thing
    It seems hard to believe that something like only 3% risk undertaking a trial. Maybe I should stay away from words like "undertaker."
  • JackieP125
    JackieP125 Member Posts: 56
    foxhd said:

    Chemo based
    No. It is not chemo based in a typical sense. MDX-1106 is a monoclonal antibody. I believe it binds to the molecule that triggers the die off of T-cells. Therefore allowing them to persue the cancer cells. It then eliminates them.......How far can this go?

    WONDERFUL NEW!!!
    Fox I am soooooooooo happy for you. I am crying too with joy. What good news. This has made my day!!!
  • Fishknees
    Fishknees Member Posts: 73
    angec said:

    I will celebrate for you!
    Fox.. That is FANTASTIC news! I am so very happy for you that I will drink a beer in your honor!! I HATE beer.. but my hubby tells me to have a Guiness. That is such wonderful news and thank you so much for stepping up to the plate and doing this trial. It could have gone either way for you and the fact that it went the RIGHT way is remarkable!! Please never feel guilty that you are doing well. Just think about the help you are rendering to others. If they see how marvelous this drug works they will have a lot to offer in regards to speeding up the drugs' availability for other people in other Countries. Continued success to you and please, keep smiling!! Big hugs coming your way. This should give faith to others (including you TW) that help is on the way. Never, ever give up!

    One question if you don't mind Fox. Is this chemo based?

    So Glad!
    Fox I am so glad you are having such great results.

    I am new here but I can tell you have contributed so much to everyone.

    I understand about the guilt. I almost didn't post about my not having cancer.
    I am afraid to answer the phone now for fear that Mayo will call back and say they made a mistake.

    Thanks again for your bravery and care for others.
  • angec
    angec Member Posts: 924 Member
    foxhd said:

    Chemo based
    No. It is not chemo based in a typical sense. MDX-1106 is a monoclonal antibody. I believe it binds to the molecule that triggers the die off of T-cells. Therefore allowing them to persue the cancer cells. It then eliminates them.......How far can this go?

    That sounds pretty good and
    That sounds pretty good and it is working. I wonder if they give trials at sloan Kettering in NY for this. Methodist Hospital told my mom about chemo because she had a positive node and renal vein margin. But i know chemo does not work for this so why posison her with that? Glad things are working out for you. Sorry about your classmate and neighbor. Times are tough for people right now and alot of them are taking their lives. Prayers for everyone. Go ahead and have a good cry, but please don't be sorry that things are good for you. A caregiver of 35 years deserves something good for himself. Just enjoy and don't think about it. Here's a hug for you {{oo}}