CSN Login
Members Online: 8

New scans

tacyarts
Posts: 73
Joined: Apr 2012

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.

alice124's picture
alice124
Posts: 881
Joined: Mar 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 73
Joined: Apr 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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
Posts: 73
Joined: Apr 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network