I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: kristina on April 08, 2009, 03:41:54 AM
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What would your instinctive instant answer be to the following question - Yes or No, and Why? Say you are in end-stage-renal failure, and you will have a choice of going onto dialysis or eventually a renal transplant, both of which could extend your life after renal failure. Then you receive an offer - whilst in end-stage-renal-failure - to take part in a medical experiment to halt the progression of your kidney deterioration. Bare in mind this is an experiment, where the outcome is unknown, but it is conducted by a renal team of high reputation. So, what would your instinctive instant answer be Yes or No, and why? Does your thoughtful answer differ from your instinctive instant answer? Excuse me for asking this but my medical situation forces me to think about this both instinctively and thoughtfully. Thank you for your thoughts on this, Kristina.
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My instinctive answer would be- what is the substance of the trial ? I know, I'm a nerd like that.
Stage 2 or stage three trials, double blind or not, what is the medication/procedure being studied, who is running it, how long is the study, what is the compensation, etc.
To answer your question, the instinctive answer would be yes, I am interested, tell me more.
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Like the person above said, I'd say yes, tell me more. Now whether I went through with it would depend on the drug itself, side effects, whether I could go on dialysis afterwards if it didn't work, etc.
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Well, I would have to consider the pros and cons. When I received news that I had breast cancer and I had an opportunity to join an experimental study and I said yes. I said yes because I felt strongly that in order to find cures or make medicine better that there needs to be study participants. And, by the time they get to using patients in the studies most things have been vetted pretty thoroughly. So I did say yes to that study and I felt that because I was in the study that I received more follow up and just a bit better medical attention for that period of time.
It is also a buyer beware. So, make sure all information you need is provided to make an informed decision.
My :twocents;
:bunny:
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What is the drug? Make sure you know everything there is to know about it. Like I said before I have tried a few that have turned out to be wonderful, and a few that did nothing good at all.
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Thank you very much for these words of wisdom, they are very helpful indeed as this seems like a difficult matter to approach. I am glad I asked your opinion because it is difficult to think of all the points which one has to weigh up before deciding on whether or not to take such a desperate measure. Thanks again, Kristina.
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As an example let's say the experiment is to test a drug's control of blood pressure - blood pressure control is the only proven way to slow or reverse the progression of CKD. So you think yes - it would be great to take a pill and get my blood pressure under control.
But if it is a Randomized Controlled Trial (RCT) you could be randomized into the control group and receive a placebo. That wouldn't be worth the risk.
If you would be given the current medical best practice intervention and then this was on top of current best practices then I would do it but the risk of getting randomized is an issue.
BTW this is why the big RCT to determine the impact of dialysis dose - 3x week or 6x week/short or long is not working, they can;'t getenough people to sign up. People who want to dialyze frequently do not want to risk getting randomized into the three time a week incenter group. I know I wouldn't and I volunteer for almost all studies.
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What would your instinctive instant answer be to the following question - Yes or No, and Why? Say you are in end-stage-renal failure, and you will have a choice of going onto dialysis or eventually a renal transplant, both of which could extend your life after renal failure. Then you receive an offer - whilst in end-stage-renal-failure - to take part in a medical experiment to halt the progression of your kidney deterioration. Bare in mind this is an experiment, where the outcome is unknown, but it is conducted by a renal team of high reputation. So, what would your instinctive instant answer be Yes or No, and why? Does your thoughtful answer differ from your instinctive instant answer? Excuse me for asking this but my medical situation forces me to think about this both instinctively and thoughtfully. Thank you for your thoughts on this, Kristina.
Just by going from this information, I would say No. Since the decision was to go on dialysis and not have a transplant, that would mean you kidneys have already pretty much failed and according to what was written, the study is to halt the progression. To late to halt the progression if you have to be on dialysis.
Now i we are talking early stages of the disease and a live donor can not be lined up and you are facing to go on dialysis in someamount of time, then there is a possibility of trying the drug. But as others have stated, get all the information first about the program and medication, as much as you can about a renal diet and about dialysis to make a better decision