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Crohn's Disease Forum » Books, Multimedia, Research & News » Forum Approved Clinical Trials, Research Studies, Surveys and Products » Important new low side effect treatment option in clinical trial you may be eligible for (or help others learn about)


 
05-05-2014, 02:09 PM   #61
ronroush7
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Is this something insurance would pay for?
05-05-2014, 06:23 PM   #62
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Trevor, Wendsjoy, and bees - do you guys mind messaging me your email address or emailing me at [email protected]

I have some questions about the trial I'd like to ask you!

Thanks!
05-05-2014, 07:28 PM   #63
Allison M
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Please, if they are not too personal, ask them here. I'm interested too!!
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05-05-2014, 09:22 PM   #64
Trevor
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I'm a pretty open book and I have a lot of free time this week hanging out at the clinic so ask away anyone who would like to.

I did send you an e-mail as well, Sebastian, maybe check your spam or just PM here.
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www.FraserRiverForager.com

- Are you looking for a new treatment option for your Crohn's disease? If so, I suggest you look into the ongoing clinical trial by Qu Biologics for their SSI treatment. Click here for more information or to help spread the word.
05-06-2014, 12:29 AM   #65
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Trevor didn't get your email - I checked spam and all. Did you email at [email protected]
05-06-2014, 12:30 AM   #66
SBPatel
 
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Sorry Alison yeah kind of private questions - if you ahve any questions for me though I'd be happy to answer
05-08-2014, 06:58 AM   #67
Poppysocks
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I got a call today from Qu. They said that since I was currently taking a biologic, I was ineligible to participate. I was given a letter, though, to give to my GI that explains the trial so he can make an informed decision whether to take me off my current drugs. The folks there were so very nice. I'm still keeping my fingers crossed since I've had no relief from Humira.
Do you know how long you have to be off your biologic for in order to participate?
05-10-2014, 12:42 PM   #68
Trevor
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Hi Poppysocks

I looked around and couldn't find a written answer anywhere for you. If you're interested and it's a concern just call, they're super friendly or, if I remember, I'll ask the study nurse when she calls me in a week or two.
05-13-2014, 09:40 PM   #69
David
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We have a second member updating in Trevor's thread located here now. Very exciting!
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06-03-2014, 07:23 AM   #70
David
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There are still a LOT of slots that need filled in the trial.
06-03-2014, 12:41 PM   #71
Trevor
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Maybe I'm underestimating the travel issue, but I find this shocking.

4 out of 5 digestive tracts recommend SSI's.

If anyone is worried about travel or being in a strange city or anything give me a shout and I'll do whatever I can to help Vancouver is a great place to visit.

Let's not let some other disease beat us to market! If there's one thing Crohnies aren't it's quitters :P
06-03-2014, 03:10 PM   #72
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Maybe I'm underestimating the travel issue, but I find this shocking.

4 out of 5 digestive tracts recommend SSI's.

If anyone is worried about travel or being in a strange city or anything give me a shout and I'll do whatever I can to help Vancouver is a great place to visit.

Let's not let some other disease beat us to market! If there's one thing Crohnies aren't it's quitters :P
I traveled from Philadelphia for this study! If I can do that than anyone can go
And yes, Vancouver is amazing! Loved it there.
06-03-2014, 03:42 PM   #73
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My gastro discouraged me from going ahead with any trials, I'm glad I went against his advice. The truth is, the Qu folks don't have a marketing budget to spread the word about this treatment, it's up to us to document our success and recommend it to others.

I've been trying to spread the word as much as I can on facebook groups, reddit, and in person. Most people don't know about alternative options, and trust that their doctor is making the right choices. Mistakes and bad choices happen all the time in health care, don't be afraid to question your doctor to ensure that your treatment choices are in your best interest, and not just the safest option for your doctors career.

My doc even made sure to document in my file that I am starting this treatment against his advice to avoid any liability.
06-03-2014, 04:31 PM   #74
David
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Bees, have you been back to your primary gastro lately? If so, what did he say about your progress?
06-03-2014, 04:37 PM   #75
Crohn2357
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I'm subscribing to this thread.
06-03-2014, 04:41 PM   #76
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My gastro discouraged me from going ahead with any trials, I'm glad I went against his advice. The truth is, the Qu folks don't have a marketing budget to spread the word about this treatment, it's up to us to document our success and recommend it to others.

I've been trying to spread the word as much as I can on facebook groups, reddit, and in person. Most people don't know about alternative options, and trust that their doctor is making the right choices. Mistakes and bad choices happen all the time in health care, don't be afraid to question your doctor to ensure that your treatment choices are in your best interest, and not just the safest option for your doctors career.

My doc even made sure to document in my file that I am starting this treatment against his advice to avoid any liability.

Good for you!!!! Well said! I am the same way. My doc is still trying to get me to drop out of the study and start remicade and pred. Even though I am making more progress with this than anything else. You have to stand up for what you know is best for your body and not blindly follow what is 'standard'!
06-03-2014, 06:23 PM   #77
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I tried to get into the trial, but my fecal calprotectin and CRP levels were not "bad" enough. I hope the change the inclusion criteria for phase 2.
06-03-2014, 06:36 PM   #78
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I found I was eligible for a different trial by Pfizer, which I'm now testing for eligibility. The wash-out period for meds was six weeks. My CRP, CT Scan, X-Rays, and stool tests have tested at the appropriate levels. Now I just wait for my colonoscopy to finalize the eligibility. To answer Poppysocks question, I think that the Qu Trial was also six weeks of biologic wash-out, although I don't know for certain.
06-04-2014, 09:44 AM   #79
Trevor
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My gf's best friend got turned down because his CRP was too low as well. They met in nursing school and both smoke which leads nicely into my rant about doctors and how many of them are horribly incompetent...

I don't even mind the incompetence so much but their just so arrogant while being incompetent.

Dr. Bressler at the trial is great though
06-08-2014, 09:49 AM   #80
Lady Organic
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I find this new treatment very encouraging. I've watched one of the videos and the doctors mention the treatment can help for UC and auto-immune arthritis as well. Hopefully it will be soon accepted as a treatment.

so for those who went to the Bahamas, the treatment is available there? or its still for study purposes?
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06-13-2014, 08:38 AM   #81
David
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I found I was eligible for a different trial by Pfizer, which I'm now testing for eligibility. The wash-out period for meds was six weeks. My CRP, CT Scan, X-Rays, and stool tests have tested at the appropriate levels. Now I just wait for my colonoscopy to finalize the eligibility. To answer Poppysocks question, I think that the Qu Trial was also six weeks of biologic wash-out, although I don't know for certain.
What is Pfizer testing?
06-22-2014, 06:35 PM   #82
Crohn2357
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People, do you have any idea when will the phase 1/2 study result? I want to see published results of this exciting therapy very soon.
06-22-2014, 07:01 PM   #83
David
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People, do you have any idea when will the phase 1/2 study result? I want to see published results of this exciting therapy very soon.
It's going to be a long time unfortunately.

They haven't even filled half the slots for the study. Only after all the participants finish and they crunch and compile and present the data will we get the results.
06-23-2014, 06:41 PM   #84
Poppysocks
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It's going to be a long time unfortunately.

They haven't even filled half the slots for the study. Only after all the participants finish and they crunch and compile and present the data will we get the results.
I'm trying to get into the study, it's taking forever to get my medical records though.
06-25-2014, 03:01 PM   #85
David
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I'm trying to get into the study, it's taking forever to get my medical records though.
Awesome. I hope you're able to!
06-25-2014, 03:18 PM   #86
Crohn2357
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I wish this trial will become available for global crohn's patients very soon. This has a potential for becoming groundbreaking crohn's treatment and other immune related diseases like HIV and Cancer. I wish it will work for colitis and other IBD too. Thanks for showing us the updates and supporting this trial.
06-25-2014, 03:20 PM   #87
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Hi
I really dont understand why people in Canada and America with crohns are not dying to be a part of this trial. I live in Ireland and have put my name down for when they can take international patients.
06-25-2014, 03:51 PM   #88
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Chron2357 it does work for Colitis - I have it, and took the treatment and have been in remission since. I am also surprised that people are not knocking down the door to be part of the trial.
06-25-2014, 03:57 PM   #89
David
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I really dont understand why people in Canada and America with crohns are not dying to be a part of this trial. I live in Ireland and have put my name down for when they can take international patients.
Everyone has their reasons and it's not my place to judge. The ones I'm focused on are those that simply don't know about it. If you're game, please do what you can to spread word about this trial. Even putting the info in your signature like I outline in the first post can help a LOT.

The sooner we get the trial filled, the sooner it can end. And if the data is good, then we'll be one step closer to widespread usability.
06-25-2014, 05:50 PM   #90
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People are generally scared of the 'unknown'. It's a scary thing to jump into a new drug that hasn't been proven yet.
Also, you can't be on biologics to be in the study so I am sure that alone excludes many many IBD patients.
Personally, I jumped at the shot to be in and feel extremely privileged to have been accepted. I hope that this helps many people in the years to come!
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