Participaing in a clinical trial?

dhs1963

GSRon said:

Todd, I keep reading your

Todd, I keep reading your posts on adjuvant therapy.. and it appears to me you are reacting emotionally and not logically..  So far none of those kinds of studies showed any success.  Why those types of trials keep showing up is a wonder to me..?  Follow the money.. is what I think.  I am all for a trial that may lead to something positive, but this type just does not "pencil" to me.  Someone will quickly let me know if I am off base...

You keep saying your odds are 50%.. that may or may not be true.. does not really matter.  If you are stage 3 then anything can happen.

But what you fail to see is the negative of this type of trial..  First, since your insurance would cover the follow ups, then no gain there...  But there are only so many drugs we have.. and it is not a lot of them.  Not all drugs work for everyone.. that further can reduce the number of treatments you can get, if needed.  Sadly if you use up a good drug now, you won't have it later, so may lose time on your life clock..  There really is nothing to gain..  The only gain I can see is if you can not tolerate that drug for some reason.

I know you and many "think" you need to be pro active... Nothing is stopping you from being pro active..  Two of the best things you can do, is improve your diet and increase exercize..  I suspect Neil will chime in on the diet front..

I wish you luck...

Ron

Being proactive

Adjuvant theropies may eventually find something, but it will probably be different than what we currently use.

NO TRIAL HAS SHOWED EXTENDING LIFE.  They have shown longer disease free intervals, but when the disease comes back, the disease has evolved away from that target.  So, do you want to use the time with the target now, or later when there is disease?

Being proactive means being religious about the scans.  Get them as needed.  Do not skip them.  The tumor will not (usuallY) grow for NED to dangerous that quickly with RCC

todd121

GSRon said:

Todd, I keep reading your

Todd, I keep reading your posts on adjuvant therapy.. and it appears to me you are reacting emotionally and not logically..  So far none of those kinds of studies showed any success.  Why those types of trials keep showing up is a wonder to me..?  Follow the money.. is what I think.  I am all for a trial that may lead to something positive, but this type just does not "pencil" to me.  Someone will quickly let me know if I am off base...

You keep saying your odds are 50%.. that may or may not be true.. does not really matter.  If you are stage 3 then anything can happen.

But what you fail to see is the negative of this type of trial..  First, since your insurance would cover the follow ups, then no gain there...  But there are only so many drugs we have.. and it is not a lot of them.  Not all drugs work for everyone.. that further can reduce the number of treatments you can get, if needed.  Sadly if you use up a good drug now, you won't have it later, so may lose time on your life clock..  There really is nothing to gain..  The only gain I can see is if you can not tolerate that drug for some reason.

I know you and many "think" you need to be pro active... Nothing is stopping you from being pro active..  Two of the best things you can do, is improve your diet and increase exercize..  I suspect Neil will chime in on the diet front..

I wish you luck...

Ron

Thanks

I appreciate your feedback. Not sure that your analysis of me being emotional while you're being rational is really a fair one, but I hear your argument. Perhaps we can disagree and both be rational? Or both be a little emotional, and mostly rational and still disagree? You may not know everything that went into my decision. I'll try and present a little more information, but not to change your mind, but perhaps to ease your concern that I'm a little hysterical (not in the funny sense! Lol).

I've been on this study for 9 months. I'm almost done. The discussion and decision was made back in January.

I had advice from 3 oncologists, 2 of them RCC experts. 2 of the 3 of them agreed with me, one had an attitiude of it being totally up to me to do it or not, but if I did it wanted me to use a different drug which he thought had a better chance of being effective, but he wouldn't explain to me why he thought it had a better chance. Because of his refusal to explain his reasoning, I decided to discount his advice.

None of the doctors brought up your argument or discouraged me from doing it. In fact, I don't think I heard this argument on the board until a few months later. I think it makes a fairly good case for waiting. The 50% odds are supported by several studies which I've read and 2 RCC experts independently quoted me that number. If I had been Stage 1, I very probably would have not done the study. It does ignore the main premise of what adjuvant therapy is all about as explained to me by one of the doctors: that is that a less effective drug, when presented with a very small number of cells, may be effective in eliminating or drastically cutting back those small number of cells to the point of if there are very, very small numbers left your immune system may handle those. The hope is this less effective drug might cure the cancer or give a much longer time to recurrence when presented early before any tumors show up.

I also had talked to and seen the posts of another member here who was on the same study and was having minimal/no side effects. My doctor told me his experience was that most patients tolerate this drug really well. The drug I'm taking has been used by organ donor recepients for years, so there's a lot of history with it.

Yes. It's a chance I took, but I'm ok with it. I agree with you and others that it's not very likely to work. However, we're not going to know that for a few years until they collect the data and see.

And I wish you luck too.

Todd

todd121

cww71964 said:

trial

Hi,

Just happened to check in today and thought I would add my 2 cents. I finished up the Everolimus trial back in March. No real side effects at all except my triglycerides were up by 200 points. Two months after the trial, I dropped 180 points so I know I was getting the drug and not the placebo. I had my 18 month scan a few days ago and go to the oncologist tomorrow to get results. My cost of the trial was co-pay for scans every 18 weeks and co-pays for oncologist every 6. Now that I am off the trial the insurance has preapproved me for scans every 6 months for the next 2 years. I am happy that I went on the trial as I felt like I was able to take my health into my own hands and try and do something about my situation.

 

Thanks,

Wayne

Hi Wayne, Fellow Everolimus User

Nice to see you here. I've been on 9 months. Getting my next 18 week scans next week and very anxious about them.

My side effects are also minimal. My creatinine was up just a little last time, and that made me nervous. I'm hoping this time it will be back down. I'm pretty sure I'm one the drug. I've had fatigue and nausea mainly, but it has come and gone and been mostly mild. There were some other changes that I won't go into that makes me pretty sure I'm on the drug.

I'll be glad to finish. I'm getting antsy to get off it and see what it feels like to be off it. I've even thought of quitting (the 1 year is a fairly arbitrary time to have selected). Anyway, I think I can handle 3 more months, so I'll just stay.

Hoping my 18 week scans turn out NED. So far so good.

Todd

gatorbob

Phoenix Rising said:

I am in a trial...

Hi Joanne!  I am currently in the LY2875358 trial.  So far, it has not cost me anything except my valuable sick and vacation time from work.  My insurance co. covers the scans and the trial covers everything else ( I think), including my parking when I come in for infusions, blood tests, and scans.  So basically, there has been no out of pocket cost associated with the trial.  I haven't seen where they are billing insurance for anything other than the scans.

Where are you??

I am on the same trial. Beginning the 13th month! Are you at Emory?? Phase one ?

 

cww71964

todd121 said:

Hi Wayne, Fellow Everolimus User

Nice to see you here. I've been on 9 months. Getting my next 18 week scans next week and very anxious about them.

My side effects are also minimal. My creatinine was up just a little last time, and that made me nervous. I'm hoping this time it will be back down. I'm pretty sure I'm one the drug. I've had fatigue and nausea mainly, but it has come and gone and been mostly mild. There were some other changes that I won't go into that makes me pretty sure I'm on the drug.

I'll be glad to finish. I'm getting antsy to get off it and see what it feels like to be off it. I've even thought of quitting (the 1 year is a fairly arbitrary time to have selected). Anyway, I think I can handle 3 more months, so I'll just stay.

Hoping my 18 week scans turn out NED. So far so good.

Todd

Hi Todd

My scans were negative and I am positive yours will be too. Other than my cholesterol dropping, I did notice I was less fatigued during the day. You have come this far so you may as well finish.

Wishing you the best,

Wayne