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New scans

tacyarts
tacyarts Member Posts: 73
I had my most recent scans and they showed stable disease, not exactly what I wanted but I will certainly take it. My next decisions are to maybe have surgury on my leg and put a prosthetic femor bone in the place of my broken one, this may or may not disqualify me from the mdx/ sutent trial that I am on. I've done a lot of thinking about this decision but I cannot take the crutches or the unbelievable pain that I have been having since June. I sure am hopeing that they will not kick me out of the study but right now I have no quality of life at all and need a chance of some pain relief.

Comments

  • alice124
    alice124 Member Posts: 896
    New Scans
    Tacyarts - You've been in pain now for a long time, so I certainly understand your frustration. I hope Hopkins allows you to stay in the trial with the operation. Please keep us posted. Take care of yourself.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    alice124 said:

    New Scans
    Tacyarts - You've been in pain now for a long time, so I certainly understand your frustration. I hope Hopkins allows you to stay in the trial with the operation. Please keep us posted. Take care of yourself.

    Pain relief
    Tacyarts, before committing yourself, do ask the wise heads on KIDNEY-ONC for their advice - maybe someone can help you get a better resolution of the problem.
  • tacyarts
    tacyarts Member Posts: 73

    Pain relief
    Tacyarts, before committing yourself, do ask the wise heads on KIDNEY-ONC for their advice - maybe someone can help you get a better resolution of the problem.

    Asking advise
    I agree with you tex but I have been living with a broken femur that won't heal due to tumor. The pain has reached a point that I can't stand it anymore, the narcosis make me sick and goofy, I'm only sleeping a couple of hrs a night. I will take any advice that is offered but my quality of life is really poor right now. I'm not sure that they will bump me out of trial , the very last thing that I want to do is get out of trial, but I may have to make that decision. Any advise would truely be appreciated.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    tacyarts said:

    Asking advise
    I agree with you tex but I have been living with a broken femur that won't heal due to tumor. The pain has reached a point that I can't stand it anymore, the narcosis make me sick and goofy, I'm only sleeping a couple of hrs a night. I will take any advice that is offered but my quality of life is really poor right now. I'm not sure that they will bump me out of trial , the very last thing that I want to do is get out of trial, but I may have to make that decision. Any advise would truely be appreciated.

    Advice
    Tacyarts, you probably won't feel much like exploring how to get onto KIDNEY-ONC to ask for help so would you like me to post your message over there, for you, and ask for their thoughts? I don't suppose it matters, but I don't know your gender. I also don't know your age, which may be more significant.

    If you would like me to do that, please let me know asap and I'll go ahead. I'm so sorry that you're suffering so badly and would hate to see you exiting the trial for that reason, if it can be avoided. I know of at least one man of around 70 on KIDNEY-ONC who went through a very similar experience and is very compassionate. I might be able to put him in touch with you.
  • tacyarts
    tacyarts Member Posts: 73

    Advice
    Tacyarts, you probably won't feel much like exploring how to get onto KIDNEY-ONC to ask for help so would you like me to post your message over there, for you, and ask for their thoughts? I don't suppose it matters, but I don't know your gender. I also don't know your age, which may be more significant.

    If you would like me to do that, please let me know asap and I'll go ahead. I'm so sorry that you're suffering so badly and would hate to see you exiting the trial for that reason, if it can be avoided. I know of at least one man of around 70 on KIDNEY-ONC who went through a very similar experience and is very compassionate. I might be able to put him in touch with you.

    Kidney-onc
    That would be great tex/ I have never explored that sight so if you would post it for me that would be greatly appreciated. I am a 43 yr old male with two young children 5 and 10 and this pain and crutches is greatly hindering my ability to be a good active father.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    tacyarts said:

    Kidney-onc
    That would be great tex/ I have never explored that sight so if you would post it for me that would be greatly appreciated. I am a 43 yr old male with two young children 5 and 10 and this pain and crutches is greatly hindering my ability to be a good active father.

    KIDNEY-ONC
    I've put something in train that I hope may help so try to hang on and I'll get back to you real soon.