MDX 1106/Votrient Trial

alice124
alice124 Member Posts: 896 Member
John will be at Hopkins tomorrow being screened for admission to the MDX 1106/votrient trial. Oncologist's office told him to be prepared to be there all day with tests - blood, ekg, stress, etc. He's concerned about stress as he's been miserable with sholder pain for a month now. (Doctor prescribed oxycodene a couple of weeks ago but hasn't helped much.)

If screening goes okay, he'll start trial on May 10. Then on May 11, they have scheduled an MRI of his shoulder.

Will keep you posted on progress.
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Comments

  • foxhd
    foxhd Member Posts: 3,181
    MDX-Votrient
    I hope things go well. I'm really interested about all combo options. My improvement since starting the MDX is phenomenal. But who knows how long it will last. Lets hope the treatment helps with the pain. When my pelvis and spine became involved the pain was worse than the surgery. But it went away quickly once treatment started.
  • alice124
    alice124 Member Posts: 896 Member
    foxhd said:

    MDX-Votrient
    I hope things go well. I'm really interested about all combo options. My improvement since starting the MDX is phenomenal. But who knows how long it will last. Lets hope the treatment helps with the pain. When my pelvis and spine became involved the pain was worse than the surgery. But it went away quickly once treatment started.

    MDX-Votrient
    That's music to my ears Fox. Until this shoulder paiin started, he had not experienced much pain. I'm hoping he mimics your response. Thanks for the optimism.
  • tacyarts
    tacyarts Member Posts: 73
    alice124 said:

    MDX-Votrient
    That's music to my ears Fox. Until this shoulder paiin started, he had not experienced much pain. I'm hoping he mimics your response. Thanks for the optimism.

    mdx-Votrient
    Best of luck to you, I Will be praying for you, I am prob going to be trying a mdx combo drug at hopkins in about 8 weeks.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    tacyarts said:

    mdx-Votrient
    Best of luck to you, I Will be praying for you, I am prob going to be trying a mdx combo drug at hopkins in about 8 weeks.

    MDX-1106/Votrient
    Let's hope you follow the trail Fox has blazed. Do you know what's being paired with MDX? Is it a trial?
  • tacyarts
    tacyarts Member Posts: 73

    MDX-1106/Votrient
    Let's hope you follow the trail Fox has blazed. Do you know what's being paired with MDX? Is it a trial?

    my trials
    One that i will prob do is sutent or the other is voltrent, Yes it is a trial at hopkins.
  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    my trials
    One that i will prob do is sutent or the other is voltrent, Yes it is a trial at hopkins.

    MDX Votrient Trial
    Sorry Tac; I can't seem to find your earlier posts. And I missed your diagnosis. Since I might be running into you at Hopkins, we may as well be friends. So tell me about yourself.

    Thank you for the good wishes and I do hope John can start the trial on Thursday, May 10, but we've had some complications/setbacks.

    Yesterday didn't go perfectly. John's been having terrible pain in his shoulder for several weeks now. Yesterday his scan showed bone lesions, growth in his lung nodules, and a pelvic mass. His EKG was a little high (457) and he had a fever and an elevated white blood count. His EKG must be below 450 to qualify for trial and they are going to do another EKG tomorrow. Their thinking is the fever and elevated WBC may be attributed to tumors and his ingestion of nausea medication prior to the EKG.

    If EKG is below 450 tomorrow and there are no more setbacks or red flags, he will begin the trial on May 10. He and I are very anxious to fight this disease and have been in a hold mode too long. Fox has had great results with MDX and we're hoping to join him on the winning side of the field. Keep me posted on your plans so we can compare notes.
  • alice124
    alice124 Member Posts: 896 Member
    alice124 said:

    MDX Votrient Trial
    Sorry Tac; I can't seem to find your earlier posts. And I missed your diagnosis. Since I might be running into you at Hopkins, we may as well be friends. So tell me about yourself.

    Thank you for the good wishes and I do hope John can start the trial on Thursday, May 10, but we've had some complications/setbacks.

    Yesterday didn't go perfectly. John's been having terrible pain in his shoulder for several weeks now. Yesterday his scan showed bone lesions, growth in his lung nodules, and a pelvic mass. His EKG was a little high (457) and he had a fever and an elevated white blood count. His EKG must be below 450 to qualify for trial and they are going to do another EKG tomorrow. Their thinking is the fever and elevated WBC may be attributed to tumors and his ingestion of nausea medication prior to the EKG.

    If EKG is below 450 tomorrow and there are no more setbacks or red flags, he will begin the trial on May 10. He and I are very anxious to fight this disease and have been in a hold mode too long. Fox has had great results with MDX and we're hoping to join him on the winning side of the field. Keep me posted on your plans so we can compare notes.

    MDX1106/Votrient Trial
    Okay, we're back on for May 10. EKG's went okay. Since the blood work showed no red flags, the fever and wbc count is being attributed to tumor fever. His thyroid count is low and he will receive medication to bring that up and hopefully restore some of his energy.

    On another note John's friends and family will be walking tomorrow at the Baltimore Zoo for National Kidney Foundation. Our team--Walking for John--has raised over $10,000. The walk itself with all teams (over 100) is up to $175,000.
  • tacyarts
    tacyarts Member Posts: 73
    alice124 said:

    MDX1106/Votrient Trial
    Okay, we're back on for May 10. EKG's went okay. Since the blood work showed no red flags, the fever and wbc count is being attributed to tumor fever. His thyroid count is low and he will receive medication to bring that up and hopefully restore some of his energy.

    On another note John's friends and family will be walking tomorrow at the Baltimore Zoo for National Kidney Foundation. Our team--Walking for John--has raised over $10,000. The walk itself with all teams (over 100) is up to $175,000.

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!
  • tacyarts
    tacyarts Member Posts: 73
    alice124 said:

    MDX1106/Votrient Trial
    Okay, we're back on for May 10. EKG's went okay. Since the blood work showed no red flags, the fever and wbc count is being attributed to tumor fever. His thyroid count is low and he will receive medication to bring that up and hopefully restore some of his energy.

    On another note John's friends and family will be walking tomorrow at the Baltimore Zoo for National Kidney Foundation. Our team--Walking for John--has raised over $10,000. The walk itself with all teams (over 100) is up to $175,000.

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!
  • tacyarts
    tacyarts Member Posts: 73
    alice124 said:

    MDX1106/Votrient Trial
    Okay, we're back on for May 10. EKG's went okay. Since the blood work showed no red flags, the fever and wbc count is being attributed to tumor fever. His thyroid count is low and he will receive medication to bring that up and hopefully restore some of his energy.

    On another note John's friends and family will be walking tomorrow at the Baltimore Zoo for National Kidney Foundation. Our team--Walking for John--has raised over $10,000. The walk itself with all teams (over 100) is up to $175,000.

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!
  • tacyarts
    tacyarts Member Posts: 73
    alice124 said:

    MDX1106/Votrient Trial
    Okay, we're back on for May 10. EKG's went okay. Since the blood work showed no red flags, the fever and wbc count is being attributed to tumor fever. His thyroid count is low and he will receive medication to bring that up and hopefully restore some of his energy.

    On another note John's friends and family will be walking tomorrow at the Baltimore Zoo for National Kidney Foundation. Our team--Walking for John--has raised over $10,000. The walk itself with all teams (over 100) is up to $175,000.

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!
  • tacyarts
    tacyarts Member Posts: 73
    tacyarts said:

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

    speach problem
    wow i really studdered< sorry bout that guys!!
  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

    trials
    We'll have to stay in touch and compare notes. You're right it is scarey stuff. What stage were you when you had your kidney removed--any mets at that time?

    I don't know if you've had the chance to read Fox's posts. He is a source of inspiration for many of us on this board with his response to an MDX1106 trial. If you haven't read his reports, do so. It will improve your spirits.

    John starts his trial this week on May 10. Good luck to your starting yours soon and let's hope for wonderful success stories. I'll keep you and your children in my prayers. Keep believin' a cure will come. . .
  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

    trials
    We'll have to stay in touch and compare notes. You're right it is scarey stuff. What stage were you when you had your kidney removed--any mets at that time?

    I don't know if you've had the chance to read Fox's posts. He is a source of inspiration for many of us on this board with his response to an MDX1106 trial. If you haven't read his reports, do so. It will improve your spirits.

    John starts his trial this week on May 10. Good luck to your starting yours soon and let's hope for wonderful success stories. I'll keep you and your children in my prayers. Keep believin' a cure will come. . .
  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    trials
    I figure that i will be on the sutent/mdx trial in about 7 weeks. the one that u are on is filling up fast. I too have Dr Hammers, I am 43 yrs old and had a kidney removed aboue 1.5 yrs ago and had scans in Nov and found mets in both lungs with steady growth, I tried IL2 with no positive results. Scarry stuff, ive got 2 young children $.5 and 10 yrs old, ive gotta beat this terrible disease for them!

    trials
    We'll have to stay in touch and compare notes. You're right it is scarey stuff. What stage were you when you had your kidney removed--any mets at that time?

    I don't know if you've had the chance to read Fox's posts. He is a source of inspiration for many of us on this board with his response to an MDX1106 trial. If you haven't read his reports, do so. It will improve your spirits.

    John starts his trial this week on May 10. Good luck to your starting yours soon and let's hope for wonderful success stories. I'll keep you and your children in my prayers. Keep believin' a cure will come. . .
  • alice124
    alice124 Member Posts: 896 Member
    alice124 said:

    trials
    We'll have to stay in touch and compare notes. You're right it is scarey stuff. What stage were you when you had your kidney removed--any mets at that time?

    I don't know if you've had the chance to read Fox's posts. He is a source of inspiration for many of us on this board with his response to an MDX1106 trial. If you haven't read his reports, do so. It will improve your spirits.

    John starts his trial this week on May 10. Good luck to your starting yours soon and let's hope for wonderful success stories. I'll keep you and your children in my prayers. Keep believin' a cure will come. . .

    speach
    Looks like we're having the same speech problem. Must be contagious.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    speach
    Looks like we're having the same speech problem. Must be contagious.

    Speech, speech!
    I'm glad to be able to report, Alice, that the CSN team is presently working on a re-vamp of the site and hopes to be able to improve the technical performance parameters to reduce the problems of slow loading, downtime and repeat postings etc.

    Not only that but they have promised to address the points you and I have made on your thread "Collecting kidney cancer information from Kidney cancer patients".

    How great will it be if John and tacyarts enjoy the same sort of success as Fox on MDX-1106? I hope the walk went well yesterday and that John's spirits are up. Has he tried out the MAARS program as yet?
  • tacyarts
    tacyarts Member Posts: 73

    Speech, speech!
    I'm glad to be able to report, Alice, that the CSN team is presently working on a re-vamp of the site and hopes to be able to improve the technical performance parameters to reduce the problems of slow loading, downtime and repeat postings etc.

    Not only that but they have promised to address the points you and I have made on your thread "Collecting kidney cancer information from Kidney cancer patients".

    How great will it be if John and tacyarts enjoy the same sort of success as Fox on MDX-1106? I hope the walk went well yesterday and that John's spirits are up. Has he tried out the MAARS program as yet?

    original tumer
    Im not sure what my original stage was, I never asked, and my uroligist never stated. It had not spread as of then, I just assumed that my cancer ordeal was over, the "it cant happen to me" syndrom. I have read foxes posts and I pray for all of us that this IS a clear cut cure. It is so easy to get a little depressed during this whole ordeal, one minute I will be full of hope and positive vibes and the next everything mentally goes downhill fast. This site can surely be uplifting.
  • alice124
    alice124 Member Posts: 896 Member

    Speech, speech!
    I'm glad to be able to report, Alice, that the CSN team is presently working on a re-vamp of the site and hopes to be able to improve the technical performance parameters to reduce the problems of slow loading, downtime and repeat postings etc.

    Not only that but they have promised to address the points you and I have made on your thread "Collecting kidney cancer information from Kidney cancer patients".

    How great will it be if John and tacyarts enjoy the same sort of success as Fox on MDX-1106? I hope the walk went well yesterday and that John's spirits are up. Has he tried out the MAARS program as yet?

    Speech!
    That's great news TW. Thank you for taking the lead on changes that will positively impact everyone utilizing this Board. Will be anxious to see the tweeks made.

    Yes, John does listen to the MAARS program regularly. And he plans to read the book this week while at Hopkins preparing for and receiving the MDX. He made up his mind weeks ago that he wanted to read the book while undergoing treatment.

    The walk went really well, and John was able to complete it. He's been a little on the weak side lately so we weren't certain he would conquer it, but he did. WooHoo!!! With all the money collected on line and the checks turned in yesterday at walk time, our team ended up the #1 team. (And I had my picture taken with Paul Kruger of the Baltimore Ravens!) We had a huge turnout of family and friends, and I know it did John a lot of good to see the phenomenol number of people in his corner.
  • alice124
    alice124 Member Posts: 896 Member
    tacyarts said:

    original tumer
    Im not sure what my original stage was, I never asked, and my uroligist never stated. It had not spread as of then, I just assumed that my cancer ordeal was over, the "it cant happen to me" syndrom. I have read foxes posts and I pray for all of us that this IS a clear cut cure. It is so easy to get a little depressed during this whole ordeal, one minute I will be full of hope and positive vibes and the next everything mentally goes downhill fast. This site can surely be uplifting.

    original tumor
    Tacyarts,

    The first thing I'd suggest you do so you know what you're dealing with is get a copy of your original pathology report that will show how big your tumor was, the grade, and other specifics. Having that knowledge helps you to better understand what you're dealing with.

    Did you have the kidney removed at Hopkins? If so, you can probably get your copy electronically. But may because of the time that has passed, they may have to mail. In either case, I think it would be worthwhile for you to get it.