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Thread: Cpi-613

  1. #11
    Quote Originally Posted by caregivercasey View Post
    Earl, I saw your article the other day on LetsWinPC, I'm so glad this trial has worked for you! Are you still on treatment? I saw that some of the people recurred after stopping, have the doctors discussed the possibility of just doing CPI-613 alone without chemo?

    I see that they are opening up a Phase 3 trial of this, and a Phase 2 is starting with Gem / Taxol. I'm wondering which would be best for my mother, as she already was treated with Cisplatin + Gem + Taxol, so maybe the FOLFIRINOX + CPI 613 would be better. I believe this is the Phase 3: https://clinicaltrials.gov/ct2/show/...CPI-613&rank=9.

    ddessert - I believe the trial you posted is for "locally advanced" pancreatic cancer. The Phase 3 is for Metastatic / Stage IV, as this will probably allow them to get some type of expedited approval given the lack of treatment options currently.
    Reading through the trial further, it appears these treatments are for treatment naive patients, so my mother would not qualify.

  2. #12
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    Quote Originally Posted by caregivercasey View Post
    Earl, I saw your article the other day on LetsWinPC, I'm so glad this trial has worked for you! Are you still on treatment? I saw that some of the people recurred after stopping, have the doctors discussed the possibility of just doing CPI-613 alone without chemo?

    I see that they are opening up a Phase 3 trial of this, and a Phase 2 is starting with Gem / Taxol. I'm wondering which would be best for my mother, as she already was treated with Cisplatin + Gem + Taxol, so maybe the FOLFIRINOX + CPI 613 would be better. I believe this is the Phase 3: https://clinicaltrials.gov/ct2/show/...CPI-613&rank=9.

    ddessert - I believe the trial you posted is for "locally advanced" pancreatic cancer. The Phase 3 is for Metastatic / Stage IV, as this will probably allow them to get some type of expedited approval given the lack of treatment options currently.
    We were all stage 4.

    The Phase III study of Stage 4 Pancreatic Cancer patients is still on for starting in August. Found out two weeks ago that the Baptist in Winston Salem is going to participate. Folfirinox plus CPI613 will both be given to the study patients.

    I don't know if a person that has already had chemo will be eligible. Maybe... There is always Compassionate use. Go to the Rafael Pharmacutical web page..... there are forms there to apply for compassionate use.

    The study is supposed to be in 100 hospitals world wide... Coming soon to a hospital near you.... I HOPE.

    I'm told that if the phase III study gets anything near the results of the phase I, that the FDA is poised to approve CPI613 quickly.

    having been involved in the phase I study for over 2.5 years I know a lot about the results from reports available PLUS, I've PERSONALLY known about 6 people on CPI613 plus Folfirinox. The results ARE PHENOMINAL....

    IN AUGUST, My wife and I are making our THIRD trip from NC to NV to the Burning Man Festival SINCE BEING DIAGNOSED!!!!!!!!!!!.... dont google burning man at work.... I will drive our small RV about 4500 miles and spend about 2 weeks in the Nevada Desert with 70,000 other crazy folks. We cook breakfast for our camp.. I will personally cook about 200 lbs of bacon and/or sausage.

    IF YOU GET A CHANCE TO JOIN THE STUDY... PLEASE DO!!!!!!!!!!!! For your sake and for the sake of future stage 4 patients...

    BTW, in August 2018, my CA19-9 will have been BELOW 35 for TWO YEARS.... Thats only a month from now. it was 5.4 two weeks ago. It peaked at 10,000. David's CA19-9 is running in the three's and fours's. He always beats me by a point or two. ANTHING below 35 is a winner.


    Earl
    Last edited by po18guy; 07-16-2018 at 05:31 AM. Reason: Investment info deleted.

  3. #13
    Anyone know how we can find out which hospitals are involved in the clinical trails?

  4. #14
    Super Moderator Top User ddessert's Avatar
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    Quote Originally Posted by Markseantaylor View Post
    Anyone know how we can find out which hospitals are involved in the clinical trails?
    The easy and most up-to-date way is to contact PanCan.org for clinical trial searches.

    The longer and less up-to-date method is to use www.clinicaltrials.gov and search for CPI-613 in pancreatic adenocarcinoma, then for each of the results, look for the section Contacts and Locations to see the participating sites. Sometimes youíll have to call the contact for the principal investigator for more up-to-date information.
    BRCA2 3398del5
    Dec 2010 - back/abd pain
    May 2011 - Unresectable stage III, 2.5cm tumor
    Jun-Aug 2011 - Gem/Cis, 9 rounds
    Oct-Nov 2011 - IMRT+Xeloda
    Oct 2011-Sep 2012 - shrinking tumor
    Feb 2012 - National Familial Pancreatic Study
    Aug 2012 - Downgraded to stage IIA, PGP
    Sep 2012 - Whipple, T3N0M0, 0.5cm tumor, 0/16 lymph nodes
    Dec 2012 - Quebec PanCan Study
    Sep 2012-May 2019 - NED
    Mar 2013-present - NCT01088789
    Jun 2019- NCT03805919
    @pancanology

  5. #15
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    Iím told that the phase III study is to start in October. Other than the baptist in Winston Salem I have no idea what other hospitals it will be in. But itís supposed to be world wide. 500 patients. 100 hospitals.

    Wish I did.

    September 30 I will be a 3 year survivor
    Last week my CA19-9 was 7.5. Tomorrow I get a new mri and ct Scan. Iíve never had scans that were worse than the previous ones.

    A link to a massive amount of information on CPI613 is available at my special email address. [email protected]
    It auto responds sending about a dozen live links including a link to to the compassionate use forms. The address thinks Iím on vacation. If you have specific questions I will try to answer.
    I have been blessed and Iím trying to pay it forward

    BTW my wife and I DID go back to Burningman. Our fourth. The third annual 5500 mile trip to the Reno area for this annual art festival in the desert SINCE being diagnosed. I drove our small RV as much as 650 miles per day to get from NC to Reno in 4 days.

    DO THE EMAIL. or google CPI613 Earl Groce.

    Then google CPI613 David Wingo

    David is my friend, patient #5 in the phase I study. David is a 51 month stage 4 PC survivor.
    Last edited by cobraearl; 09-19-2018 at 04:20 AM. Reason: Additional info

  6. #16
    Moderator Senior User BrigitteM's Avatar
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    I tried to get into this trial. Two weeks ago, the large scale phase 3 had not started. To get a more precise idea when it will start, the best is probably to contact the drug manufacturer itself, or the main investigator of the phase 2 or the principal investigator of a phase 1 with Gemcitabine/Abraxane + CPI613 at the Atlantic Health System Cancer Center in Morristown.
    __________________________________________________ ___________________
    1/12/2016 No symptoms except ongoing fatigue; blood test revealed elevated liver enzymes
    1/18/2016 Liver ultrasound, then MRI confirmed enlarged bile duct
    1/21/2016 ERCP and placement of a temporary stent
    1/28/2016 CT-Scan showed a lesion on the head of pancreas
    2/09/2016 2nd ERCP + EUS + FNA
    2/12/2016 DX Borderline resectable pancreas ductal adenocarcinoma - Stage 3 @ 61
    2/24/2016 FOLFIRINOX 3 cycles (6 infusions)
    5/12/2016 CYBER-KNIFE Stereotactic Radiation 3 sessions
    6/16/2016 WHIPPLE + portal vein and right hepatic artery reconstructions - 0/19 nodes pos - no mets. Restaged to 1A
    8/31/2016 FOLFOX for 3 cycles (6 infusions)
    Sept 2016 Know Your Tumor - PANCAN.org
    11/4/2016 CT Scan clear - NED
    May 2017 Liver lesion - DX mild fatty liver disease - NED
    Aug 2017 Several small lung nodules - slow growth - NED until August 2018
    Aug 2018 Pancreatic metastasis confirmed by biopsy.
    Sept 2018 Starting clinical trial with RX-3117 and Abraxane (NCT03189914)
    March 2019 Lung nodules are stable

  7. #17
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    The Winston-Salem study is supposed to start accepting patients in next week or so. Have heard that Cleveland may be second.

    There was a tv article on the w/s study a few days ago. I canít find it.

  8. #18
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    I KNOW that the Baptist Hospital in Winston Salem NC is accepting patients.

    If you are a recent Stage 4 diagnosis with NO CHEMO already, you may be able to get in.

    I also know that there is a hospital in Chicago in the study. don't know which one.

    I continue to be in good health at 43 months since diagnosis. Just completed ROUND 82 of folfirinox plus CPI613.

    Tried driving for Uber this past weekend. Driving to Toronto next wed/thur.
    Last edited by cobraearl; 05-20-2019 at 11:38 PM.

  9. #19
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    April 24, 2019, Direct from Rafael Phamacuticals the sites of the Phase III CPI613 study are:

    •NYU Langone Health - Paul Oberstein in NYC
    •Atlantic Health System - Angela Alistar in Morristown, NJ
    •Blue Ridge Cancer Care - Mark Kochenderfer in Roanoke, VA
    •Ingall Cancer Center (Chicago) - Mark Kozloff in Chicago, IL
    •Levine Cancer - Mohamed Salem in Charlotte, NC
    •Wake Forest - Caio Max, Rocha Lima in Winston Salem, NC
    •Huntsman Cancer Center (University of Utah) - Ignacio Garrido-Laguna in Salt Lake City, UT
    •University of Pittsburgh - Nathan Bahary in Pittsburgh, PA
    •University Hospitals Seidman Cancer Center (Cleveland) - David Bajor in Cleveland, OH

    More sites will be added as they are looking for up to 100 sites and up to 500 patients WORLD WIDE...

    To the best of my knowledge, To be part of the study, a patient has to have stage 4 pancreatic Cancer. AND must not have had any chemo yet.. there are other restrictions but these are two big restrictions.

    Hopefully PanCan will know as new sites are added.

 

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