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lesvanb
lesvanb Member Posts: 905
edited March 2014 in Colorectal Cancer #1

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  • pepebcn
    pepebcn Member Posts: 6,331 Member
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    ls he a reliable guy?
    Is he well known there?
    Hugs.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    pepebcn said:

    ls he a reliable guy?
    Is he well known there?
    Hugs.

    Pepe
    My understanding is that they are trying to have everything lined up around the end of October to start to evaluate who qualifies to begin clinical trials on this.

    Here is the actual journal article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2632828/

    It seems to be the latest promising treatment getting ready to go to trial.
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    Yes, it is
    Yes, Leslie, that's the one. Pepe, Dr. Lenz is very well known here and is always up on the very latest. I received an email reply from him yesterday letting me know that it will be a phase I clinical trial and the people already on his "phase I trial list" will have first priority, but there should be still room for others. He told me to email his assistant Taline to get on the list. I do so, but was told by Taline that they have to have documented evidence from a scan that I've had progression on my current treatment in order to add me to the list. My next scan isn't due until the 1st week of Nov & I think they're gather info on the trial end of Oct. Since I have an appt w/ my onc a week from today, I think I'll ask if I can get my scan any sooner than that (esp if we have concern from my CEA still rising- I get the results of yesterday's CEA blood test later today).

    Lori- thanks for the actual journal article. Are you looking into this trial for yourself also?
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    lisa42 said:

    Yes, it is
    Yes, Leslie, that's the one. Pepe, Dr. Lenz is very well known here and is always up on the very latest. I received an email reply from him yesterday letting me know that it will be a phase I clinical trial and the people already on his "phase I trial list" will have first priority, but there should be still room for others. He told me to email his assistant Taline to get on the list. I do so, but was told by Taline that they have to have documented evidence from a scan that I've had progression on my current treatment in order to add me to the list. My next scan isn't due until the 1st week of Nov & I think they're gather info on the trial end of Oct. Since I have an appt w/ my onc a week from today, I think I'll ask if I can get my scan any sooner than that (esp if we have concern from my CEA still rising- I get the results of yesterday's CEA blood test later today).

    Lori- thanks for the actual journal article. Are you looking into this trial for yourself also?

    No
    I don't qualify for the trial but, I do know someone else who is looking into it. I just like to try and keep up to date on things. You never know when something might become applicable since this disease can turn on a dime!

    Lisa, good luck, I hope you are able to get your scan early and get in on the trial.
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    If anyone is interested
    Or if you just want to know what he's about and his general attitudes/recommendations, Dr Lenz used to keep an ongoing blog here: http://www.revolutionhealth.com/community/people/profile/heinzjosef
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    Lori-S said:

    If anyone is interested
    Or if you just want to know what he's about and his general attitudes/recommendations, Dr Lenz used to keep an ongoing blog here: http://www.revolutionhealth.com/community/people/profile/heinzjosef

    Lori
    Thanks, Lori. I just went to Dr. Lenz's blog via the link you wrote down & the latest blog conversation on it was from June 2008. Do you know if he has another site, or has he not actually written anything there since 2008?

    Also, how do you know you don't qualify for the trial? Do you know that just from genetic testing or is it because you haven't had advancement of disease?

    Lisa
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    lisa42 said:

    Lori
    Thanks, Lori. I just went to Dr. Lenz's blog via the link you wrote down & the latest blog conversation on it was from June 2008. Do you know if he has another site, or has he not actually written anything there since 2008?

    Also, how do you know you don't qualify for the trial? Do you know that just from genetic testing or is it because you haven't had advancement of disease?

    Lisa

    Lisa
    Don't quote me on it but, I think he's spent the last couple of years really working on getting to this trial and that is why the dates on his blog are from 2008. I don't know of any other blogs for him but, thought that at least you could get a feel for him and how he thinks. I like to know those sort of things about people, especially doctors.

    Knock on wood ... I haven't had an advancement of disease.
  • polarprincess
    polarprincess Member Posts: 202 Member
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    Lori-S said:

    Lisa
    Don't quote me on it but, I think he's spent the last couple of years really working on getting to this trial and that is why the dates on his blog are from 2008. I don't know of any other blogs for him but, thought that at least you could get a feel for him and how he thinks. I like to know those sort of things about people, especially doctors.

    Knock on wood ... I haven't had an advancement of disease.

    dr
    dr lenz new blog is at fightcolorectalcancer.org
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    dr
    dr lenz new blog is at fightcolorectalcancer.org

    Duh!
    I've been reading the blog and didn't realize it! Thanks for pointing it out.
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
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    Lori-S said:

    Duh!
    I've been reading the blog and didn't realize it! Thanks for pointing it out.

    Hey Lori,
    I can't find any requirements for the trail. can you tell me how you are getting the info? I just saw an article from the colorectal cancer coalition website, but no links to see more info. Thanks Melissa
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Lilmiss82 said:

    Hey Lori,
    I can't find any requirements for the trail. can you tell me how you are getting the info? I just saw an article from the colorectal cancer coalition website, but no links to see more info. Thanks Melissa

    Melissa
    As I understand it ... and remember I was reading his blog and didn't even realize!... They are still setting protocol for phase I but are hoping to have that done by end of Oct. or in Nov. For more information go to his blog http://fightcolorectalcancer.org/awareness/from_the_desk_of_dr_lenz and send out an email or contact Lisa42 she seems to have some recent information. I'm not sure how far along they are with the protocol.
  • Lilmiss82
    Lilmiss82 Member Posts: 257 Member
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    Lori-S said:

    Melissa
    As I understand it ... and remember I was reading his blog and didn't even realize!... They are still setting protocol for phase I but are hoping to have that done by end of Oct. or in Nov. For more information go to his blog http://fightcolorectalcancer.org/awareness/from_the_desk_of_dr_lenz and send out an email or contact Lisa42 she seems to have some recent information. I'm not sure how far along they are with the protocol.

    Thanks!!
    :)I'm gonna check it out, if I can't participate I want to let other people know about it.
  • traci43
    traci43 Member Posts: 773 Member
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    pepebcn said:

    ls he a reliable guy?
    Is he well known there?
    Hugs.

    Love Dr. Lenz, he's the greatest!!!!!!!
    He's very good
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Lilmiss82 said:

    Thanks!!
    :)I'm gonna check it out, if I can't participate I want to let other people know about it.

    Hey! Clinical Trial Participation Form
    I found where you can check a box asking to participate. When you go to this page you can click the request an appointment box on the right side and it will pop up a form to send.
    http://www.doctorsofusc.com/doctor/bio/view/72149

    They still haven't published the webpage for the actual trial yet but it will be here:
    http://www.uscnorris.com/colorectalcenter/
    under clinical trial unique vaccine.
  • lisa42
    lisa42 Member Posts: 3,625 Member
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    Lori-S said:

    Melissa
    As I understand it ... and remember I was reading his blog and didn't even realize!... They are still setting protocol for phase I but are hoping to have that done by end of Oct. or in Nov. For more information go to his blog http://fightcolorectalcancer.org/awareness/from_the_desk_of_dr_lenz and send out an email or contact Lisa42 she seems to have some recent information. I'm not sure how far along they are with the protocol.

    don't know
    Sorry, I don't have any more info than you do either. Dr. Lenz does seem to reply to emails,but because he is such a busy man,I'd only email him if you are truly interested. His email is: lenz@usc.edu
    His assistant's name is Taline & I can't find her email address offhand.

    Lisa