MDX 1106/Votrient Trial

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Comments

  • 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.

    pain disappearance after treatment
    Fox - You mention the pelvis and spine went away quickly once treatment started. John--as you know--started the MDX/Votrient trial this past Thursday, May 10. And while it's only been four days, I see his shoulder pain is less intense. I don't want to sound unreasonably optimistic, but I can't help but think maybe it is the treatment. When you said your pain went away quickly, were you meaning days, weeks, months (?).
  • foxhd
    foxhd Member Posts: 3,181 Member
    alice124 said:

    pain disappearance after treatment
    Fox - You mention the pelvis and spine went away quickly once treatment started. John--as you know--started the MDX/Votrient trial this past Thursday, May 10. And while it's only been four days, I see his shoulder pain is less intense. I don't want to sound unreasonably optimistic, but I can't help but think maybe it is the treatment. When you said your pain went away quickly, were you meaning days, weeks, months (?).

    pain
    In review, pain started in my front right pelvic crest where my hip flexor tendon inserts. This was just before Christmas. Progressed to where I couldn't climb stairs step over step, or get into the car without serious effort. Pretty much became homebound. Then mid spine pain began and both were very intense by second or third week of january. Began needing the percocets to get around the house. This was about my 3rd cycle of MDX. Then by mid feb. I could feel the pain diminishing substantially and gone by march. I was able to return to full exercise during march, and have had no pain since. My infusions are every 3 weeks. Also, scans had shown my pelvic crest and t4 had large lesions which are now mostly scarred and inactive. Next scan is in a week and a half. Hope to get continued good reports. I pray John does this well too......also, my wife had suggested that I keep a journal and I have not. So often I am losing some specifics that should be clear. However, I used my treatment calenders to confirm this progression.
  • alice124
    alice124 Member Posts: 896 Member
    foxhd said:

    pain
    In review, pain started in my front right pelvic crest where my hip flexor tendon inserts. This was just before Christmas. Progressed to where I couldn't climb stairs step over step, or get into the car without serious effort. Pretty much became homebound. Then mid spine pain began and both were very intense by second or third week of january. Began needing the percocets to get around the house. This was about my 3rd cycle of MDX. Then by mid feb. I could feel the pain diminishing substantially and gone by march. I was able to return to full exercise during march, and have had no pain since. My infusions are every 3 weeks. Also, scans had shown my pelvic crest and t4 had large lesions which are now mostly scarred and inactive. Next scan is in a week and a half. Hope to get continued good reports. I pray John does this well too......also, my wife had suggested that I keep a journal and I have not. So often I am losing some specifics that should be clear. However, I used my treatment calenders to confirm this progression.

    pain
    Thank you for clarifying that Fox. His lessened pain the past several days is probably due to his taking his pain medication on schedule (every four hours) and not just when the pain gets intolerable.
    _________________________
    P.S. As we all know on this board, you're a star. But your notoriety goes well beyond the margins of this board. Over the past couple months, John and I have told several (probably more than I realize) colleagues/friends of your MDX experience/success/journey. This past weekend, John and I were joined by friends and family for the National Kidney Foundation walk at the Baltimore Zoo. John wore many smiles that day, but several can be attributed to you. In the midst of 5000 walkers, the question "How's Fox doing" rang out several times.

    Thank you for all you share.
  • alice124
    alice124 Member Posts: 896 Member
    foxhd said:

    pain
    In review, pain started in my front right pelvic crest where my hip flexor tendon inserts. This was just before Christmas. Progressed to where I couldn't climb stairs step over step, or get into the car without serious effort. Pretty much became homebound. Then mid spine pain began and both were very intense by second or third week of january. Began needing the percocets to get around the house. This was about my 3rd cycle of MDX. Then by mid feb. I could feel the pain diminishing substantially and gone by march. I was able to return to full exercise during march, and have had no pain since. My infusions are every 3 weeks. Also, scans had shown my pelvic crest and t4 had large lesions which are now mostly scarred and inactive. Next scan is in a week and a half. Hope to get continued good reports. I pray John does this well too......also, my wife had suggested that I keep a journal and I have not. So often I am losing some specifics that should be clear. However, I used my treatment calenders to confirm this progression.

    pain
    pain
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    pain
    Thank you for clarifying that Fox. His lessened pain the past several days is probably due to his taking his pain medication on schedule (every four hours) and not just when the pain gets intolerable.
    _________________________
    P.S. As we all know on this board, you're a star. But your notoriety goes well beyond the margins of this board. Over the past couple months, John and I have told several (probably more than I realize) colleagues/friends of your MDX experience/success/journey. This past weekend, John and I were joined by friends and family for the National Kidney Foundation walk at the Baltimore Zoo. John wore many smiles that day, but several can be attributed to you. In the midst of 5000 walkers, the question "How's Fox doing" rang out several times.

    Thank you for all you share.

    golf and attitude
    Alice, i thought this item from an email I've just received might interest John

    "psychologists at Purdue University in Indiana have recently discovered that better golf players appear to perceive holes as being larger than they actually are.

    The research involved showing golfers a board with different size circles drawn on it after they'd finished their round, then asking them to indicate the one which was the size of those on the course (one circle was the same diameter while others were either smaller or larger than real life).

    The better players tended to overestimate the size of the holes by between 10 and 20 per cent, and the researchers believe this may have led them to adopt a more positive mindset while they worked their way around the course.

    It's probably fair to say that you don't become a winner in any sport by expecting to lose. Whilst I'm sure that being ridiculously over-optimistic can be self-defeating, it seems sensible to assume that it helps to adopt a positive attitude.

    In life, as in sport? Go into today expecting it to be a good one, and it may well will be. Start off foreseeing the worst, however, and you might just be proved right."

    Have you located the posts you wanted to follow up on?

    Has John been reading Jerry's book and, if so, is he enjoying it?
  • foxhd
    foxhd Member Posts: 3,181 Member
    alice124 said:

    pain
    Thank you for clarifying that Fox. His lessened pain the past several days is probably due to his taking his pain medication on schedule (every four hours) and not just when the pain gets intolerable.
    _________________________
    P.S. As we all know on this board, you're a star. But your notoriety goes well beyond the margins of this board. Over the past couple months, John and I have told several (probably more than I realize) colleagues/friends of your MDX experience/success/journey. This past weekend, John and I were joined by friends and family for the National Kidney Foundation walk at the Baltimore Zoo. John wore many smiles that day, but several can be attributed to you. In the midst of 5000 walkers, the question "How's Fox doing" rang out several times.

    Thank you for all you share.

    kidney walk
    ....Wow! that is humbling and embarrassing. I better keep up the recovery and become the standard for MDX success. It's also kind of funny because long before the diagnosis, I resisted being on the internet at all. I didn't want to be part of any groups. I held the belief that when I did die, I wanted people to say, "Who?" Guess I kinda blew that one. LOL!
  • garym
    garym Member Posts: 1,647
    foxhd said:

    kidney walk
    ....Wow! that is humbling and embarrassing. I better keep up the recovery and become the standard for MDX success. It's also kind of funny because long before the diagnosis, I resisted being on the internet at all. I didn't want to be part of any groups. I held the belief that when I did die, I wanted people to say, "Who?" Guess I kinda blew that one. LOL!

    Well, we're all glad you are part of this group!!!
    Your neighbors, however, probably don't like having to draw the shades at night to reduce the glow that's been keeping them awake. LOL!
  • alice124
    alice124 Member Posts: 896 Member

    golf and attitude
    Alice, i thought this item from an email I've just received might interest John

    "psychologists at Purdue University in Indiana have recently discovered that better golf players appear to perceive holes as being larger than they actually are.

    The research involved showing golfers a board with different size circles drawn on it after they'd finished their round, then asking them to indicate the one which was the size of those on the course (one circle was the same diameter while others were either smaller or larger than real life).

    The better players tended to overestimate the size of the holes by between 10 and 20 per cent, and the researchers believe this may have led them to adopt a more positive mindset while they worked their way around the course.

    It's probably fair to say that you don't become a winner in any sport by expecting to lose. Whilst I'm sure that being ridiculously over-optimistic can be self-defeating, it seems sensible to assume that it helps to adopt a positive attitude.

    In life, as in sport? Go into today expecting it to be a good one, and it may well will be. Start off foreseeing the worst, however, and you might just be proved right."

    Have you located the posts you wanted to follow up on?

    Has John been reading Jerry's book and, if so, is he enjoying it?

    golf and attitude
    "Go into today expecting it to be a good one, and it may well will be. Start off foreseeing the worst, however, and you might just be proved right."

    I like that and will add it to the billboard in my brain that's constantly flashing important stuff like this. Thanks. I think I need the reminder more than John. Weeks ago when his shoulder pain started, he self diagnosed himself with a rotary cuff injury and continued to think that as it worsened. I--on the other hand--immediately worried it may be the kidney cancer, though I didn't speak my concern. When the Dr. did the catscan and confirmed it was the cancer. he was surprised and that surprised me.

    John has read and enjoyed Jerry White's book. I believe he intends to reread. Maybe that explains his optimisim.


    Yes, I did find Chris Lawing's posts. My problem is I had at some point unsubscribed from the site due to the incredible number of emails I was receiving. I rejoined requesting the digest version and hope it will be easier to maintain.

    Appreciate your sharing your research.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    golf and attitude
    "Go into today expecting it to be a good one, and it may well will be. Start off foreseeing the worst, however, and you might just be proved right."

    I like that and will add it to the billboard in my brain that's constantly flashing important stuff like this. Thanks. I think I need the reminder more than John. Weeks ago when his shoulder pain started, he self diagnosed himself with a rotary cuff injury and continued to think that as it worsened. I--on the other hand--immediately worried it may be the kidney cancer, though I didn't speak my concern. When the Dr. did the catscan and confirmed it was the cancer. he was surprised and that surprised me.

    John has read and enjoyed Jerry White's book. I believe he intends to reread. Maybe that explains his optimisim.


    Yes, I did find Chris Lawing's posts. My problem is I had at some point unsubscribed from the site due to the incredible number of emails I was receiving. I rejoined requesting the digest version and hope it will be easier to maintain.

    Appreciate your sharing your research.

    golf and attitude
    I'm glad John enjoyed the book. I was fairly confident that it would be up his street.

    Re the Digest, you may not be surprised that I've been in touch with Robin, Peggy and others to suggest simple ways in which they could improve the list and make it more easily assimilable. There are constraints which seemingly make it difficult but I'm ever hopeful. I, too, hastily went back to the Digest after trying the straight email version and getting my inbox even more swamped. I find the HTML version best and it's worth experimenting with the settings.

    However, I've found that there's a better workaround. For research, use the keyword search facility but for everyday keeping up with new info, ignore the Digest and go into the Archive, selecting the latest month. 'Home Page' gives access to the Archive listed by month but it also gives a list of the latest messages, chronologically, with topic and author. You can select the number of messages displayed and I have mine set currently to 10. Going into the current month shows the Table of Contents, with the messages listed, classified by topic, alphabetically and then the messages, expandably, by topic, sub-classified by date. It's a far less painful way of engaging with the information, so much of which is very interesting and potentially helpful.
  • alice124
    alice124 Member Posts: 896 Member

    golf and attitude
    I'm glad John enjoyed the book. I was fairly confident that it would be up his street.

    Re the Digest, you may not be surprised that I've been in touch with Robin, Peggy and others to suggest simple ways in which they could improve the list and make it more easily assimilable. There are constraints which seemingly make it difficult but I'm ever hopeful. I, too, hastily went back to the Digest after trying the straight email version and getting my inbox even more swamped. I find the HTML version best and it's worth experimenting with the settings.

    However, I've found that there's a better workaround. For research, use the keyword search facility but for everyday keeping up with new info, ignore the Digest and go into the Archive, selecting the latest month. 'Home Page' gives access to the Archive listed by month but it also gives a list of the latest messages, chronologically, with topic and author. You can select the number of messages displayed and I have mine set currently to 10. Going into the current month shows the Table of Contents, with the messages listed, classified by topic, alphabetically and then the messages, expandably, by topic, sub-classified by date. It's a far less painful way of engaging with the information, so much of which is very interesting and potentially helpful.

    acor site
    Thanks for the tips. You're right - the archive method is a much more efficient tool for researching "of interest" topics. Thank you. Also appreciate your efforts to make it more user friendly for all.