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Author Topic: Has anyone been in this clinical trial?  (Read 2197 times)

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Offline bbfan2001

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Has anyone been in this clinical trial?
« on: June 22, 2009, 02:20:41 PM »
hi-this is my first post. I usually keep these things to myself and my partner but I have a big decision and I would like to talk to others that have been in clinical trials. I'm 32 and I've been on Reyataz, Norvir and Truvada for about 3 years, VL < 50 and CD4 436. It's been Ok but I have struggled with  side effects that have affected work and now my cholesterol level is out of whack. My doctor wants to put me in  a clinical trial that he is in where they inject me monthly with my immune cells (after they do something to them-not sure what) so that my immune system can control the HIV. He said (but he doesn't have that many patients yet) that there haven't been any side effects but that a couple patients viral loads went from undect. to < 5000 but not higher. I would be on the trial for 2 years and then I would have to go back to ARV. What would you do?

Offline Miss Philicia

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Re: Has anyone been in this clinical trial?
« Reply #1 on: June 22, 2009, 03:40:04 PM »
Is this the VRX496 study that U-Penn is doing?  If so there are several threads on this if you do a search.
"Iíve slept with enough men to know that Iím not gay"

Offline bbfan2001

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Re: Has anyone been in this clinical trial?
« Reply #2 on: June 22, 2009, 04:31:26 PM »
Thanks-but no it isn't. However,  when I was reading some of the old  posts on that study I think I found the kind of immune therapy it is-dentritic cell therapy. It is an old post but he said the studies were being done in China. I'm not in China. So I'm wondering if studies are being started here in the US.

Offline Inchlingblue

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Re: Has anyone been in this clinical trial?
« Reply #3 on: June 23, 2009, 03:27:11 AM »
I've never been in a clinical trial but I would certainly not be against one if I felt, after doing my own research, that it was something truly promising.

I think the most important thing for you to do is find out exactly which trial this is because then it would be easier to do a little research that could help you make a decision. Some of the clinical trials are more promising than others. 

If you would be going off HAART then it couldn't possibly be a "placebo-controlled" trial since that sounds unethical.

Maybe you can ask your doctor the "clinical trials identifier" number so you can look it up on www.clinicaltrials.gov for starters?

Offline veritas

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Re: Has anyone been in this clinical trial?
« Reply #4 on: June 23, 2009, 04:48:50 AM »

bbfan2001,

Could this be the trial?:

http://clinicaltrials.gov/show/NCT00833781

The location is Mass.General Hospital in Boston.

v

Offline bbfan2001

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Re: Has anyone been in this clinical trial?
« Reply #5 on: June 23, 2009, 09:22:50 AM »
Thanks-I've got a call in to see if I can get a number. Should I be worried if I do go on the trial and my VL goes up to 5000 but my CD4 stays good like he mentioned happened to some others?

Offline newt

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Re: Has anyone been in this clinical trial?
« Reply #6 on: June 23, 2009, 11:37:55 AM »
You should bear in mind that this a placebo controlled trial.

There is a 50% chance you will get no active treatment. This effectively means you will be on a treatment break, your viral load will go up, and CD4 down.

If your CD4 count was ever below 200 I would consider not doing this study.

This said, viral load of 5,000 is probably not too harmful over 2 years if your CD4 count stays up.

There are many other combos besides yours, and in my book a responsible doc's first response to intolerable side effects is to try other approved agents, not recommend a study.

- matt
"The object is to be a well patient, not a good patient"

Offline Miss Philicia

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Re: Has anyone been in this clinical trial?
« Reply #7 on: June 23, 2009, 11:45:39 AM »

There are many other combos besides yours, and in my book a responsible doc's first response to intolerable side effects is to try other approved agents, not recommend a study.

- matt[/font]

This can't be emphasized enough.  Also, I'd be interested to know exactly what intolerable side effects the OP got from his Reyataz/Norvir/Truvada combo as from all I see it's not high on the list for side effects, save for the possible 10-day yellowing phenomena.
"Iíve slept with enough men to know that Iím not gay"

Offline Inchlingblue

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Re: Has anyone been in this clinical trial?
« Reply #8 on: June 23, 2009, 12:11:05 PM »


There is a 50% chance you will get no active treatment. This effectively means you will be on a treatment break, your viral load will go up, and CD4 down.

- matt


I know that there are many placebo-controlled trials but I thought the ones that involve going off HAART can't be placebo-controlled for ethical reasons? I could be wrong, though.

At any rate he should find out exactly what trial this would be.

Offline bbfan2001

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Re: Has anyone been in this clinical trial?
« Reply #9 on: June 24, 2009, 01:24:07 PM »
Thanks for the input, but I found out from the nurse that it is not placebo controlled-but I would be randomized to a differnet dose. My cholesterol is dangerously high even on Crestor and my doctor/I am afraid I will have a heart attack. I am young, exercise and don't eat that bad so it may be genetics but since  my liver enzymes are also now elevated I don't have as many options.
I see the doctor tomorrow and will figure it out.

Offline Inchlingblue

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Re: Has anyone been in this clinical trial?
« Reply #10 on: June 24, 2009, 01:45:24 PM »
I'd be very curious to know which trial this is. If you could let us know once you have the information that would be great.

Hang in there, sounds like you have a pretty good doctor.

Offline newt

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Re: Has anyone been in this clinical trial?
« Reply #11 on: June 24, 2009, 04:10:16 PM »
My apologies, I was commenting on the study in the link given above in this thread.

bbfan2001 - good luck, sorry you find yourself between a rock and a hard place.

- matt
"The object is to be a well patient, not a good patient"

Offline dadx4

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Re: Has anyone been in this clinical trial?
« Reply #12 on: June 27, 2009, 04:13:39 PM »
Your doctor may be referring to the trial at UPenn being done by Sangamo.  What they do is withdraw your dna and they "slice" the ccr5 gene out of it.   Then the inject it back in you and you will not have that gene anymore.   In theory they believe that if you don't have the gene your immune system will fight off HIV from spreading.      


This is the trial

http://clinicaltrials.gov/ct2/show/NCT00842634/

Going by this they are still recruiting for this trial and if any of you qualify you should consider it. 
« Last Edit: June 27, 2009, 04:16:46 PM by dadx4 »

 


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