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Author Topic: Clinical trial for gene therapy??  (Read 1251 times)

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Offline brady85

  • Member
  • Posts: 3
Clinical trial for gene therapy??
« on: August 19, 2011, 12:16:26 AM »
Hey guys,

So it's been 4 months since my infection and about 3.5 since my diagnosis.  I still feel regret and frustration but it is getting better.  In these past few months, I've done a lot of reading, perhaps too much, but I have learned a lot. 

Most of us have probably heard of the Berlin patient and have done our own research on how that whole process went down.  I know that I have.  Since learning of this single case of a cure, I've come across the studies/clinical trials being conducted by Sangamo at various locations in the US.  What are your thoughts on this therapy??  Pros and cons??  Obviously the unknown/newness of the therapy is a major con but it's really the only one I've been able to identify.  I've contacted the location in Florida regarding the current trial with treatment naive patients.  I've also sent them all my bloodwork and while most everything looks good, my CD4 hasn't rebounded enough.  My first results were a VL of over 9 million and a CD4 of 309 (this was less than a month post serocoversion and about 5 weeks after the date of my exposure).  My second blood draw was in early August (approximately 3 months post seroconversion).  The second results were a VL of 219000 and a CD4 of 354.  What are your thoughts on these numbers??  Do you think they will continue to level out of the next few months?  I think that's what my ID doc is hoping for.  That's what I was hoping for but I also thought my second set of numbers would be better... not that they're horrible but I thought I was really healthy before infection and this would make my body better equipped to handling the virus.  I guess the significant reduction in VL is a good thing tho.  I don't know what my percentages are but will be sure to get those at my next doc visit (tomorrow).  Anyway, you have to have a CD4 of 500 to participate in the trial... do you think there's any hope of me getting back to that level??  Is there anything I can do, aside from starting treatment, to help my CD4??  Also, do you think I would be taking a drastic risk by participating in this trial??  From what I've read and understand (I'm a chemical engineer by profession), I think it's a pretty small risk given the possible benefits...

Any thoughts would be much appreciated! :D

Offline buginme2

  • Member
  • Posts: 2,913
Re: Clinical trial for gene therapy??
« Reply #1 on: August 19, 2011, 02:15:57 AM »
Hi brady, welcome to the forums.  I'm sorry that you are positive.

First.  Your viral load reduction from 9 million to 219000 is a huge drop.  While 219k is still a little high you are very early in your infection and I would bet my paycheck that it will continue to drop and your cd4's will stabilize.

You will need a few blood tests to see a trend and decide with your doctor your next steps.

Now on to the trials.   My own personal opinion is. Don't bother.  I beleive you should instead find a doctor who specializes in HIV care that you are comfortable with that you trust.   

Being newly positive its normal to read a lot on the internet and hope to join a clinical trial and hopeto be cured.  Thats normal. Just try and be a little grounded about it or you could end up dissapointed. 


Offline newt

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  • Posts: 3,885
  • the one and original newt
Re: Clinical trial for gene therapy??
« Reply #2 on: August 19, 2011, 05:19:59 AM »
You need to wait 6 months to see your real baseline numbers. Recovery is possible but sometimes your immune system takes a hit and your CD4s don't go back to 500+

The Sangomo research is very interesting, not just in terms of an alternative to combination therapy but (more probably) as an adjunct to help with immune recovery. I would try this experimental therapy.

Sangomo currently have 4 phase 1 (safety/dosing) or phase 1/2 trials (safety/efficacy) and you can read about them here:

http://www.sangamo.com/pipeline/sb-728.html

It is likely additional trials or wider inclusion criteria (eg lower CD4 count for people not on treatment) will be developed over the next 2-3 years.

HIV treatment is a long game and I expect to see radical changes to it in the next 10 years.

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

Offline surf18

  • Member
  • Posts: 525
Re: Clinical trial for gene therapy??
« Reply #3 on: August 19, 2011, 11:25:32 AM »
Being newly positive its normal to read a lot on the internet and hope to join a clinical trial and hopeto be cured.  Thats normal. Just try and be a little grounded about it or you could end up dissapointed. 

that above is good advice. that was me a year ago.

Offline spacebarsux

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  • Posts: 1,350
  • Survival of the Fittest
Re: Clinical trial for gene therapy??
« Reply #4 on: August 19, 2011, 12:05:10 PM »
Being newly positive its normal to read a lot on the internet and hope to join a clinical trial and hopeto be cured.  Thats normal. Just try and be a little grounded about it or you could end up dissapointed. 

that above is good advice. that was me a year ago.

Yea, it's like an AIDS overload those first few months! Also explains why the newly dx love hanging out at the Research News Forum.  ;D
Infected-  2005 or early 2006; Diagnosed- Jan 28th, 2011; Feb '11- CD4 754 @34%, VL- 39K; July '11- CD4 907@26%,  VL-81K; Feb '12- CD4 713 @31%, VL- 41K, Nov '12- CD4- 827@31%

Offline John2038

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  • Happiness is a journey, not a destination.
    • HIV Research News (Twitter)
Re: Clinical trial for gene therapy??
« Reply #5 on: August 19, 2011, 12:43:39 PM »
Hi Brady, Welcome to the forums. Sorry too that you are positive.

ZFN is one among few others on-going promising reasearch.
You may want to check for e.g. this link:

http://www.aidsmap.com/page/2016705

A recent study has shown some potential risks with ZFN but also notes that Sangamo's nuclease has been further optimized for clinical use since the version in Liu and von Kalle's work was made.

http://www.nature.com/news/2011/110807/full/news.2011.461.html

It is normal to feel stress after a new infection, but the decision to participate in a clinical trial is probably a decision to be taken with calm the mind, once the adjustment period over, and after having reading intensively what the clinical trial is all about.

While many recents news may sounds very promising, there aren't enough data to conclude also.

For e.g., despite the fact that your are currently treatment naive, who knows if this or that clinical trial won't make you less susceptible to a regimen ? And when you know that for most of the regimen, extensive data are available with proven efficiency, you may want first investigate this route and read when would be the best time for you to start a treatment.

Some will say you have plenty of time to decide to start a treatment, others would advises you (based on recent studies) that the earlier is the better, and that some studies (at least, I remember one) even consider that starting a treatment straight after the infection is the best.

It is something you will have to discuss with your ID doc, taking into account the guidelines of the country where you reside, the possible side effects, a genotype, your ability to be fully adherent, your labs and general health condition, etc.

If you have setup your mind about being involveld in a gene therapy clinical trial, I would probably consider VIRxSYS, if they are recruiting.

Just my two cents. Cross-check with what others say, many outta there can provide you with fine advises.
As in all forums, or the internet in general, considere anything you may read with a grain of salt, but take it also as an opportunity to discuss what you have read with your ID doc. Doing so is definitely an excellent idea.

 


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