pain after nephrectomy + clinical trials

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pain after nephrectomy + clinical trials

by jane99 on Sat Jul 18, 2009 12:00 AM

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My kidney was removed (plus some lymph nodes) almost four weeks ago and was wondering how long it takes for the pain to fully subside. I usually am pain free in the morning but as the day wears on I have more achiness and an occasional sharper type pain. I have gone back to work and I work at a desk job so I don't have to walk around much or anything. Also, I am 60 but my general health was good before the cancer reared its ugly head. I suppose pain is different for everyone---perhaps my threshold for pain is less than for others, but would appreciate hearing others' experiences.

Another question: I may be able to participate in a clinical trial at a cancer hospital nearby. They are trying to determine if certain meds are effective in preventing recurrence of cancer. One of the drugs is sutent; the name of the other one escapes me right now. My urologist said he thought I had a 90% chance of not having a recurrence if I do nothing. Those odds seem pretty good, but I had none of the risk factors for rcc in the first place, so why I got it is a mystery. Has anyone had experience with clinical trials? Thanks for any advice on these questions.

Jane 

 

 

 

RE: pain after nephrectomy + clinical trials

by Walking_Jim on Sat Jul 18, 2009 12:00 AM

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On 7/18/2009 jane99 wrote:

My kidney was removed (plus some lymph nodes) almost four weeks ago and was wondering how long it takes for the pain to fully subside. I usually am pain free in the morning but as the day wears on I have more achiness and an occasional sharper type pain. I have gone back to work and I work at a desk job so I don't have to walk around much or anything. Also, I am 60 but my general health was good before the cancer reared its ugly head. I suppose pain is different for everyone---perhaps my threshold for pain is less than for others, but would appreciate hearing others' experiences.

Another question: I may be able to participate in a clinical trial at a cancer hospital nearby. They are trying to determine if certain meds are effective in preventing recurrence of cancer. One of the drugs is sutent; the name of the other one escapes me right now. My urologist said he thought I had a 90% chance of not having a recurrence if I do nothing. Those odds seem pretty good, but I had none of the risk factors for rcc in the first place, so why I got it is a mystery. Has anyone had experience with clinical trials? Thanks for any advice on these questions.

Jane 

 

 

 


Jane

 I was 59 with no risk factors and in very good health (I thought) when I was diagnosed with stage 4 rcc.  I was in the hospital for 4 nights after kidney removal and was walking a couple of miles a day within a week after returning home.  The only pain I remember was from the incision and it disappeared within 2 weeks.

You did not say whether you were stage 1, 2, or 3.  Since lymph nodes were removed, I assume you were either 2 or 3.  If that is true, then the 90% value seems overly optomistic to me. 

I have had good results with both nexavar and sutent.  I have been on 50mg of sutent for 27 months  (28 days on and then 14 days off).  No new tumors have formed and the pre-existing tumors have shrunk to below 1/3 of their original lineal size and some below the resolution level of CT (approximately 3/4 of a mm).   If you are concerned about reoccurrance of rcc, I suggest you take sutent without the clinical trial or at least be assurred that you will get some dosage of sutent in the trial.  It is my understanding that in a clinical trial, you may not get any actual treatment.  Some people can not tolerate 50mg of sutent and thus it is possible that the trial you are considering may involve groups of people taking different dosages.

Good luck 

RE: pain after nephrectomy + clinical trials

by jane99 on Sat Jul 18, 2009 12:00 AM

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I did forget to mention the stage....it was a stage one, high grade tumor. Also, for the clinical trials, there are two drugs involved and a placebo. There is always the chance I could get the placebo.

 

Jane

 

 

RE: pain after nephrectomy + clinical trials

by diana1957 on Sun Jul 26, 2009 12:00 AM

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Jane,  

I had my surgery on the 27th of Feb this year and I still have pain on my right side where the kidney and the mass were.  They took to long to decide to take it out and it had already metastisized to my right lung.  I am currently taking Nexavar and have already seen some results.  The node on my lung was 1.4 cm and is now measuring only 1 cm.  That is only after 2 months.  I do have a ton of side effects, mostly the horrible tummy squirts, but I am happy with the progress.  I am just 52 and hope to beat this, before it gets to my brain.

I was on a trial before my surgery, but really think you should think about it, it hopefully will help you and others to beat this.

May God bless you...smiles, diana 

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