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25th infusion

foxhd
foxhd Member Posts: 3,181

I had my 25th infusion of MDX-1106 yesterday. My Dr. asked me, " Do you have any pain?" nope. "Night sweats?" nope. "diarrhea?" nope. "Constipation?" nope. "Fatigue?" nope."Mouth sores?" nope. Then she says, "I'll have to write that patient complains of feeling too good." Then I got my hug. I hope I can do this every 3 weeks.

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Comments

  • garym
    garym Member Posts: 1,647
    (No subject)

    SmileSmileSmileSmileSmileSmileSmileSmileSmileSmile

  • cran1
    cran1 Member Posts: 139
    You da man!
     

    You da man!

     

  • Blueraidermike
    Blueraidermike Member Posts: 25
    cran1 said:

    You da man!
     

    You da man!

     

    You inspire me

    Long time lurker, finally registered on the site to contribute.   I have watched you and love your attitude!    I am going to be apart of the the phase one trial with nivolumab /ipilimumab combo.     Should start in about 8 weeks.   

  • todd121
    todd121 Member Posts: 1,448
    Yay

    What some guys won't go through for a little feminine affirmation. :)

    Great news fox. Glad to hear it.

    BTW, is MDX-1106 going to get a more user-friendly name at some point? It sounds like a Soviet missile defense system.

    Todd

  • todd121
    todd121 Member Posts: 1,448
    Yay

    What some guys won't go through for a little feminine affirmation. :)

    Great news fox. Glad to hear it.

    BTW, is MDX-1106 going to get a more user-friendly name at some point? It sounds like a Soviet missile defense system.

    Todd

  • todd121
    todd121 Member Posts: 1,448
    Yay

    What some guys won't go through for a little feminine affirmation. :)

    Great news fox. Glad to hear it.

    BTW, is MDX-1106 going to get a more user-friendly name at some point? It sounds like a Soviet missile defense system.

    Todd

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    todd121 said:

    Yay

    What some guys won't go through for a little feminine affirmation. :)

    Great news fox. Glad to hear it.

    BTW, is MDX-1106 going to get a more user-friendly name at some point? It sounds like a Soviet missile defense system.

    Todd

    MDX-1106 aka BMS936558 aka ONO-4538 aka nivolumab

    Todd, the generic  name is nivolumab. 

    In due course, BMS will doubtless give it a brand name, once it's approved and ready for market.

  • AprilandChuck
    AprilandChuck Member Posts: 110
    Love it :D

    So happy for you!! and Hopeful for us all.. Chuck's Oncologist is getting us a schedule for infusions because once the IPI part is over we go to every 2 week infusions of just Anti PD1.. Chucks second infusion of both drugs in Monday.. he is very very hopeful about this course of treatment..his first scan after starting the treatment should come sometime at the begining of June.. I have started dreading scans.. but hoping this changes.. Fox you and other like you are an inspiration to us all.. Thank You!!

  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Love it :D

    So happy for you!! and Hopeful for us all.. Chuck's Oncologist is getting us a schedule for infusions because once the IPI part is over we go to every 2 week infusions of just Anti PD1.. Chucks second infusion of both drugs in Monday.. he is very very hopeful about this course of treatment..his first scan after starting the treatment should come sometime at the begining of June.. I have started dreading scans.. but hoping this changes.. Fox you and other like you are an inspiration to us all.. Thank You!!

    25th

    We all got our 25th Fox-blood infusion - always makes us feel better.  Laughing

  • BDS
    BDS Member Posts: 172
    25th infusion

    Congrats Fox. Now the next time please ask the good Dr. when she thinks the FDA will spread the joy for the rest of us. - BDS.

  • foxhd
    foxhd Member Posts: 3,181
    BDS said:

    25th infusion

    Congrats Fox. Now the next time please ask the good Dr. when she thinks the FDA will spread the joy for the rest of us. - BDS.

    Nivolumab

    That is the name of MDX-1106.  I am happy to the core. The biggest side effect is that I am selfishly involved in my current treatment and am not as up to date in all the other treatments everyone else is recieving. I am just so thrilled not to be dead. I fully apologize for not being up to date and able to concentrate on all the options the rest of you guys are involved in. Expecting to be dead a year ago kind of takes the wind out of my sails in terms of knowing about other drugs people are using. I sometimes feel like the first guy climbing Mt. Everest. On the way up the goal excludes others who fall to the side and die in the snow. But I must concentrate on the prize. However, the point is to stay positive. Focus on the good. Eliminate the negative. Don't waste any valuable time you could spend with your loved ones. If one path is unnegotiable, find another. I often reitierate that it took me 4 oncologists before I found the wonderful woman who is saving my life. If I start from day one of symptoms, it is 5. Please don't forget that all forum participants. Keep pushing. Know your options. I got lucky. Maybe you will too. But it won't happen if you aren't aggressive. I don't take credit for being here. I hope that never comes across.  This is not the treatment I thought I was seeking. It is just amazing that the other Drs. never proposed this option to me. What the hell did I know about kidney cancer? Dr. Kluger at the Smilow cancer center at Yale New Haven knew what to do. I hope I didn't hurt her when I squeezed her yesterday. There is hope. Whatever treatment you recieve, do your best. Know that staying alive will make future options available. Nivolumab is being considered for a 2015 availability. Keep the faith. I will and forever share my Karma. Believe me. I love you guys. And this goes for all cancer victims. Actually anyone ill. One more very important point. I am not cured. But I AM living with cancer.

  • I am alive
    I am alive Member Posts: 315
    foxhd said:

    Nivolumab

    That is the name of MDX-1106.  I am happy to the core. The biggest side effect is that I am selfishly involved in my current treatment and am not as up to date in all the other treatments everyone else is recieving. I am just so thrilled not to be dead. I fully apologize for not being up to date and able to concentrate on all the options the rest of you guys are involved in. Expecting to be dead a year ago kind of takes the wind out of my sails in terms of knowing about other drugs people are using. I sometimes feel like the first guy climbing Mt. Everest. On the way up the goal excludes others who fall to the side and die in the snow. But I must concentrate on the prize. However, the point is to stay positive. Focus on the good. Eliminate the negative. Don't waste any valuable time you could spend with your loved ones. If one path is unnegotiable, find another. I often reitierate that it took me 4 oncologists before I found the wonderful woman who is saving my life. If I start from day one of symptoms, it is 5. Please don't forget that all forum participants. Keep pushing. Know your options. I got lucky. Maybe you will too. But it won't happen if you aren't aggressive. I don't take credit for being here. I hope that never comes across.  This is not the treatment I thought I was seeking. It is just amazing that the other Drs. never proposed this option to me. What the hell did I know about kidney cancer? Dr. Kluger at the Smilow cancer center at Yale New Haven knew what to do. I hope I didn't hurt her when I squeezed her yesterday. There is hope. Whatever treatment you recieve, do your best. Know that staying alive will make future options available. Nivolumab is being considered for a 2015 availability. Keep the faith. I will and forever share my Karma. Believe me. I love you guys. And this goes for all cancer victims. Actually anyone ill. One more very important point. I am not cured. But I AM living with cancer.

    Feeling the Karma

    Hugs to you, Fox.

  • DMike
    DMike Member Posts: 259
    Congrats!

    Yay Fox! I'm very happy for you!

    --David

  • alice124
    alice124 Member Posts: 896
    foxhd said:

    Nivolumab

    That is the name of MDX-1106.  I am happy to the core. The biggest side effect is that I am selfishly involved in my current treatment and am not as up to date in all the other treatments everyone else is recieving. I am just so thrilled not to be dead. I fully apologize for not being up to date and able to concentrate on all the options the rest of you guys are involved in. Expecting to be dead a year ago kind of takes the wind out of my sails in terms of knowing about other drugs people are using. I sometimes feel like the first guy climbing Mt. Everest. On the way up the goal excludes others who fall to the side and die in the snow. But I must concentrate on the prize. However, the point is to stay positive. Focus on the good. Eliminate the negative. Don't waste any valuable time you could spend with your loved ones. If one path is unnegotiable, find another. I often reitierate that it took me 4 oncologists before I found the wonderful woman who is saving my life. If I start from day one of symptoms, it is 5. Please don't forget that all forum participants. Keep pushing. Know your options. I got lucky. Maybe you will too. But it won't happen if you aren't aggressive. I don't take credit for being here. I hope that never comes across.  This is not the treatment I thought I was seeking. It is just amazing that the other Drs. never proposed this option to me. What the hell did I know about kidney cancer? Dr. Kluger at the Smilow cancer center at Yale New Haven knew what to do. I hope I didn't hurt her when I squeezed her yesterday. There is hope. Whatever treatment you recieve, do your best. Know that staying alive will make future options available. Nivolumab is being considered for a 2015 availability. Keep the faith. I will and forever share my Karma. Believe me. I love you guys. And this goes for all cancer victims. Actually anyone ill. One more very important point. I am not cured. But I AM living with cancer.

    Nivolumab - #25!

    #25 - Congratulations!  Thank you for continuing to WOW us with that positive attitude.

     

    And P.S. - we love you right back!

  • MDCinSC
    MDCinSC Member Posts: 574
    In case no one mentioned it,

    YOU ROCK!Cool

  • alice124
    alice124 Member Posts: 896

    You inspire me

    Long time lurker, finally registered on the site to contribute.   I have watched you and love your attitude!    I am going to be apart of the the phase one trial with nivolumab /ipilimumab combo.     Should start in about 8 weeks.   

    Nivolumab

    Will be interested in following your particiipation in the upcoming trial.  Good luck!

  • Mikeyswife
    Mikeyswife Member Posts: 31
    Not in Vain

    Your kidney cancer journey has not been in vain.  The inspiration you give all of us is unbelievable.  And I agree, you do RockCool.

     

  • Limelife50
    Limelife50 Member Posts: 476
    foxhd said:

    Nivolumab

    That is the name of MDX-1106.  I am happy to the core. The biggest side effect is that I am selfishly involved in my current treatment and am not as up to date in all the other treatments everyone else is recieving. I am just so thrilled not to be dead. I fully apologize for not being up to date and able to concentrate on all the options the rest of you guys are involved in. Expecting to be dead a year ago kind of takes the wind out of my sails in terms of knowing about other drugs people are using. I sometimes feel like the first guy climbing Mt. Everest. On the way up the goal excludes others who fall to the side and die in the snow. But I must concentrate on the prize. However, the point is to stay positive. Focus on the good. Eliminate the negative. Don't waste any valuable time you could spend with your loved ones. If one path is unnegotiable, find another. I often reitierate that it took me 4 oncologists before I found the wonderful woman who is saving my life. If I start from day one of symptoms, it is 5. Please don't forget that all forum participants. Keep pushing. Know your options. I got lucky. Maybe you will too. But it won't happen if you aren't aggressive. I don't take credit for being here. I hope that never comes across.  This is not the treatment I thought I was seeking. It is just amazing that the other Drs. never proposed this option to me. What the hell did I know about kidney cancer? Dr. Kluger at the Smilow cancer center at Yale New Haven knew what to do. I hope I didn't hurt her when I squeezed her yesterday. There is hope. Whatever treatment you recieve, do your best. Know that staying alive will make future options available. Nivolumab is being considered for a 2015 availability. Keep the faith. I will and forever share my Karma. Believe me. I love you guys. And this goes for all cancer victims. Actually anyone ill. One more very important point. I am not cured. But I AM living with cancer.

    Great

    Glad to hear you are doing as good as you are Fox

  • feistyD
    feistyD Member Posts: 21
    17 infusions

    Ditto to everything you said, foxhd. I have had 17 infusions of another anti-PD-1 drug, MK 3475 (lambrolizumab) for NSCLC and no diarrhea, no fever, no breathing problems, not nothing! -just some itchy red spots. A yeat ago I also thought I wouldn't see my daughter graduate from college. Yet I just ordered the tickets for the ceremony in June! Driving across L.A. in rush hour traffic every three weeks is a pleasure, just to get my MK 3475. Yes, I still have Stage IV lung cancer, but nobody knows it from looking at me. My drug has just been given breakthrough status, so hopefully we'll see it become available in a couple of years. I come on this site because  I don't know anyone else with lung cancer in an anti-PD-1 trial. And I also worship my smart onc at USC/Norris who got me in this trial.

  • feistyD
    feistyD Member Posts: 21
    17 infusions

    Ditto to everything you said, foxhd. I have had 17 infusions of another anti-PD-1 drug, MK 3475 (lambrolizumab) for NSCLC and no diarrhea, no fever, no breathing problems, no nothing! -just some itchy red spots. A year ago I also thought I wouldn't see my daughter graduate from college. Yet I just ordered the tickets for the ceremony in June! Driving across L.A. in rush hour traffic every three weeks is a pleasure, just to get my MK 3475. Yes, I still have Stage IV lung cancer, but nobody knows it from looking at me. My drug has just been given breakthrough status, so hopefully we'll see it become available in a couple of years. I come on this site because  I don't know hardly anyone else with lung cancer in an anti-PD-1 trial. And I also worship my smart onc at USC/Norris who got me in this trial. My first onc never said a word. Second opinions are a must. And I take every opportunity to spread the word.

  • foxhd
    foxhd Member Posts: 3,181
    feistyD said:

    17 infusions

    Ditto to everything you said, foxhd. I have had 17 infusions of another anti-PD-1 drug, MK 3475 (lambrolizumab) for NSCLC and no diarrhea, no fever, no breathing problems, no nothing! -just some itchy red spots. A year ago I also thought I wouldn't see my daughter graduate from college. Yet I just ordered the tickets for the ceremony in June! Driving across L.A. in rush hour traffic every three weeks is a pleasure, just to get my MK 3475. Yes, I still have Stage IV lung cancer, but nobody knows it from looking at me. My drug has just been given breakthrough status, so hopefully we'll see it become available in a couple of years. I come on this site because  I don't know hardly anyone else with lung cancer in an anti-PD-1 trial. And I also worship my smart onc at USC/Norris who got me in this trial. My first onc never said a word. Second opinions are a must. And I take every opportunity to spread the word.

    Glad to hear it!

    It's great you found our site and responded! Anti-PD-1, God we are lucky. My biggest regret is that it isn't available to more people yet. I guess we have to be the pioneers and do good for everyone else first. Like you, NO ONE ever expects that I am sick. Stage 4 here also. BTW, I weight trained and ran 2 miles this morning!

  • angec
    angec Member Posts: 924
    GREAT FOX!!

    So happy to hear that things went well.  I am passing along another hug to you. I  know it is not a worthy as your doc's but want to send it anyway!! Keep up the good work. And another hug going out to everyone on these boards! You all deserve it!!  

     

    Great also to hear that the med Nivolumab is also helping with lung cancer. I hear it is used for ovarian and colon also.  I think they are onto something with the immuotherapy! Anyone ever hear of the following?

     

    http://www.envita.com/cancer/finally-chemotherapy-game-changer-for-stage-cancer/

  • NanoSecond
    NanoSecond Member Posts: 653
    angec said:

    GREAT FOX!!

    So happy to hear that things went well.  I am passing along another hug to you. I  know it is not a worthy as your doc's but want to send it anyway!! Keep up the good work. And another hug going out to everyone on these boards! You all deserve it!!  

     

    Great also to hear that the med Nivolumab is also helping with lung cancer. I hear it is used for ovarian and colon also.  I think they are onto something with the immuotherapy! Anyone ever hear of the following?

     

    http://www.envita.com/cancer/finally-chemotherapy-game-changer-for-stage-cancer/

    Envita

    Have not heard of them until now - but they are not unique by any stretch.  There are lots of choices out there.

    Here is another company that does a more focused job (in my opinion):

    http://www.rational-t.com/

    This kind of approach, unfortunately, will not work for most targeted therapies.  It may be of interest to consider for those undertaking traditional chemotherapy.

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

    GREAT FOX!!

    So happy to hear that things went well.  I am passing along another hug to you. I  know it is not a worthy as your doc's but want to send it anyway!! Keep up the good work. And another hug going out to everyone on these boards! You all deserve it!!  

     

    Great also to hear that the med Nivolumab is also helping with lung cancer. I hear it is used for ovarian and colon also.  I think they are onto something with the immuotherapy! Anyone ever hear of the following?

     

    http://www.envita.com/cancer/finally-chemotherapy-game-changer-for-stage-cancer/

    hugs

    Angec, I'll share your hug anytime. Thanks.

  • angec
    angec Member Posts: 924
    foxhd said:

    hugs

    Angec, I'll share your hug anytime. Thanks.

     
    I hope I didn't squeeze you

     

    I hope I didn't squeeze you too tight Fox!!  But you deserve it!!    ;)

     

    Thank you Neil for the info.  I will read it.  I like all of the info you pass onto us!! Thank you!!

     

  • angec
    angec Member Posts: 924
    ?
     

    ?

     

  • TerriNick
    TerriNick Member Posts: 43

    Envita

    Have not heard of them until now - but they are not unique by any stretch.  There are lots of choices out there.

    Here is another company that does a more focused job (in my opinion):

    http://www.rational-t.com/

    This kind of approach, unfortunately, will not work for most targeted therapies.  It may be of interest to consider for those undertaking traditional chemotherapy.

    confused

    OK, I'm confused. What is it that Fox is on that we can't get yet? And how does it work? What are the side effects or implications of treatment? Why isn't it a cure and what are the implications for the rest of the people with this illness? And I guess also when does it look likely to be available to Joe Public if it is such a good option?

    All these questions are running around in my mind. Can anyone help please?

    Terri

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    TerriNick said:

    confused

    OK, I'm confused. What is it that Fox is on that we can't get yet? And how does it work? What are the side effects or implications of treatment? Why isn't it a cure and what are the implications for the rest of the people with this illness? And I guess also when does it look likely to be available to Joe Public if it is such a good option?

    All these questions are running around in my mind. Can anyone help please?

    Terri

    confused

    "OK, I'm confused. What is it that Fox is on that we can't get yet? And how does it work? What are the side effects"  

    Fox is on a Harley and the way it works is the wheels go round and round - main side-effect appears to be exhilaration!

    He's on one of the hottest drugs yet found for RCC. It's an immunomodulator - helps the body spot the enemy and attack it more effectively.  It's generic name is nivolumab and it's still at a trial stage, so not available on the market yet. Many of us are praying that stories like Fox's will enable the manufacturer (Bristol Myers Squibb) to get expedited approval from the FDA so that we can get our hands on it.  Things are moving fast - all the more reason for hoping Nick gets full worth out of Sutent and can be ready to switch to nivolumab if it looks a good idea later on.

  • TerriNick
    TerriNick Member Posts: 43

    confused

    "OK, I'm confused. What is it that Fox is on that we can't get yet? And how does it work? What are the side effects"  

    Fox is on a Harley and the way it works is the wheels go round and round - main side-effect appears to be exhilaration!

    He's on one of the hottest drugs yet found for RCC. It's an immunomodulator - helps the body spot the enemy and attack it more effectively.  It's generic name is nivolumab and it's still at a trial stage, so not available on the market yet. Many of us are praying that stories like Fox's will enable the manufacturer (Bristol Myers Squibb) to get expedited approval from the FDA so that we can get our hands on it.  Things are moving fast - all the more reason for hoping Nick gets full worth out of Sutent and can be ready to switch to nivolumab if it looks a good idea later on.

    harley and more

    Great, thanks for the update Tex. Let's hope that it gets to market as fast as possible for everyone then.

  • donna_lee
    donna_lee Member Posts: 1,018
    angec said:

     
    I hope I didn't squeeze you

     

    I hope I didn't squeeze you too tight Fox!!  But you deserve it!!    ;)

     

    Thank you Neil for the info.  I will read it.  I like all of the info you pass onto us!! Thank you!!

     

    2 cents

    Just have to add my Good Cheers.  I'm so glad that things (healthwise) are going well.  We want you on that Harley.

    Donna