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Thread: cpi-613

  1. #1
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    cpi-613

    My brother was diagnosed with stage 4 pancreatic cancer a year ago. He has been on Folfirinox. His catscan last week showed the tumor in the pancreas is GONE. The tumors in his lungs, gone. His liver is still riddled, but those tumors are 25-50% reduced in size. Has anyone heard of this?!
    Also a client of mine sent me research about cpi-613. Any one have any experience with this?
    Or Metformin?
    Thanks

  2. #2
    Hello Zelina, and welcome to the forum. I have to say that the results that your brother had are not typical, and quite frankly, one could say almost impossible....almost! I would enjoy the amazing results that he was given, and be (cautiously) optimistic for the future. I only say cautiously because of the fact that this is pancreatic cancer and the nature of the beast isn't always so positive. Your brother may very well be one of the lucky ones...and for that, I'm so happy for your family.

    I don't know much about cpi-613 other than it is in phase I and II clinical trials so it hasn't been approved as a treatment for pancan as of yet. Usually in trials in those stages they are testing more for safety in using it in humans and working on getting the dosages correct, etc. It seems as though standard treatment has been already doing wonders for your brother, though.

    Metformin is a drug used to treat diabetes, but has recently been recognized as possibly fighting cancer cells, but much more testing is necessary before that can be determined. I do not know of anyone that has been treated for cancer with Metformin.

    I am moving your post over to the pancreatic cancer forum, which can be found on the main page under Specific Cancers. I think that you will get many more responses over there. Welcome again, and I wish your brother continued success in his treatment.

    Debbie
    March 21, 2011 - Dad diagnosed. Pancreatic Adenocarcinoma on head of pancreas.
    April 2011 - Gemcitabine and radiation for a total of 12 weeks.
    October 14, 2011 - Successful Whipple procedure. Cancer free! Best 5 months of my life!!!
    March 2, 2012 - CT scan and discovery of possible mets to both lungs.
    March 23, 2012 - Biopsy confirmed recurrence.
    May 2, 2012 - Folfiri regimen started. Stopped after 2 treatments due to infection.
    June 2, 2012 - Switched to Xeloda
    Sept. 21, 2012 - No more chemo...treatment not working anymore. Now we wait and pray.
    October 6, 2012 - My dad is now at peace in Heaven, watching over us until we meet again.

    ♥ Forever in my heart! Miss you every day more than words can say! ♥

  3. #3
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    Quote Originally Posted by Zelina View Post
    My brother was diagnosed with stage 4 pancreatic cancer a year ago. He has been on Folfirinox. His catscan last week showed the tumor in the pancreas is GONE. The tumors in his lungs, gone. His liver is still riddled, but those tumors are 25-50% reduced in size. Has anyone heard of this?!
    Also a client of mine sent me research about cpi-613. Any one have any experience with this?
    Or Metformin?
    Thanks
    I was part of the phase I, dosing study on CPI613 plus Folfirinox. Stage 4, no operation. Alive, well and very active after 2.5 years. AND still in the study.
    Last edited by po18guy; 07-16-2018 at 05:33 AM. Reason: Personal email of investor deleted.

  4. #4
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    Quote Originally Posted by cobraearl View Post
    I was part of the phase I, dosing study on CPI613 plus Folfirinox. Stage 4, no operation. Alive, well and very active after 2.5 years. AND still in the study.
    send me an email to [email protected] It will auto respond with inks to three articles. Two on PANCAN and one on LetsWinPC.. and some other info on CPI613. be glad to answer any questions you may have about my treatment. Can answer here but i visit this site maybe every two or three months.

    BTW, a Phase III Study is supposed to start in Aug 2018 in about 100 hospitals world wide on about 500 Stage 4 Pancreatic Cancer patients. study will be on Folfirinox PLUS CPI613. Same as the Phase ONE study I am STILL INVOLVED WITH after 34 months from diagnosis..

  5. #5
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    Here's an interesting article from NIH re. the mitochondrial pathways affecting PC. Includes some information concerning the effectiveness of Metformin - maybe more effective in the liver.

    https://www.cancer.gov/research/key-...g-mitochondria

    Great news for your brother!
    Mar. '18 - Diagnosed Stage IV with liver mets CA-19 124,000
    Apr. '18 - Started chemo - Gem, Abrx, Cis
    July and Sept '18 - Ct scan - all tumors shrinking
    Oct. '18 - CA-19 - 1,495
    Oct. '18 - Started Gem, Abrx 1/2 dose

  6. #6
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    CPI613 plus folfirinox continues to be a Miracle for me and David Wingo.

    Im now at 40 months. I feel very good 12 out of 14 days. The other two days, I feel sort of like I have the flu. Im very active. My wife and I DID go back to Burningman 2018. The Third trip since my diagnosis late September 2015. My wife and I just celebrated our 50th wedding anniversary.

    Been over two years since my CA19-9 has been over 35. Scans only show scar tissues. No active mets. No set of scans have ever been worse than the previous scans. I get a new set of scans after each four biweekly chemos. Get my 20th CT scan and MRI TOMMORROW!!!!!!

    David Wingo was diagnosed stage 4 in June 2014. He is very much alive and continues to get CPI613 plus folfirinox. To make the math easy, June 2014 to now is 54 months!!!!!!!!!!!!!!!!!

    The Phase III studies are cranking up. The Baptist Hospital in Winston Salem was the first to start. I've heard it mentioned that studies may start in Chicago, Toronto, Cleveland soon and up to 100 hospitals internationally.

    Check out the Rafael Pharmaceuticals Press Release web page. OR go to my Email address that AUTO RESPONDS with Much Data on this subject. The email thinks I'm on vacation and immediately replies to your email: [email protected]

    IF you are stage 4 and have not started chemo yet, this study this could be your source of hope!!!
    Last edited by cobraearl; 01-22-2019 at 06:52 PM.

  7. #7
    Moderator Senior User BrigitteM's Avatar
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    Dear CobraEarl,
    Thank you for the update. This is great news! I was told one day by a world-known oncologist that CPI613 is a good drug.

    I'm still amazed that you and David Wingo still tolerate Folfirinox after such a long time. Would you be willing to share some the effects on your blood levels, side effects, and whether you're on modified dose?

    That would be helpful for all of us.

    Thanks! Brigitte
    __________________________________________________ ___________________
    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

  8. #8
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    Yes, CobraEarl - ditto Brigitte!

  9. #9
    Moderator Senior User IndyLou's Avatar
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    I'm always happy to hear and see good results in pancreatic cancer patients, but I'm also pleased to hear about promising new treatments for it.

    There's some good information here: https://rafaelpharma.com/wp-content/uploads/2017/05/Rafael-Website-CPI-613-Fact-Sheet-2.pdf


    What's interesting (to me), is that this CPI-613 (also called devimistat), is a small-molecule compound. This means it is usually given orally, which is typically more convenient for the patient.

    Best of luck with your brother's continued treatment!
    Age 52 Male
    early Feb, 2013 - Noticed almond-sized lump in shaving area, right side of neck. No other "classic" cancer symptoms
    late Feb, 2013 - Visited PCP for check-up, PCP advised as lymphoma. Did blood work, orders for CT-scan, referred to ENT
    3/7/13 - CT-scan inconclusive, endoscopy negative
    3/9/13 - FNA of neck mass
    3/14/13 - Received dx of squamous-cell carcinoma, unknown primary
    3/25/13 - CT-PET scan reveals no other active tumors
    3/26/13 - work/up for IMRT
    4/1/13 - W1, D1 of weekly cetuximab
    4/8/13 - W1, D1 of IMRT
    5/20/13 - complete 8 week regimen of weekly cetuximab
    5/24/13 - Complete 35-day regimen of daily IMRT
    mid-July 2013 - CT-PET scan reveals no active tumors, but shows necrotic tissue at site of original tumor
    early Sept 2013 - partial neck dissection to remove necrotic tissue. Assay shows no cancer present.
    Spring 2014 - No signs of cancer
    Spring 2015 - NED
    Spring 2016 - NED
    Spring 2017 - NED
    Spring 2018 - NED
    Spring 2019 - NED

  10. #10
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    Quote Originally Posted by BrigitteM View Post
    Dear CobraEarl,
    Thank you for the update. This is great news! I was told one day by a world-known oncologist that CPI613 is a good drug.

    I'm still amazed that you and David Wingo still tolerate Folfirinox after such a long time. Would you be willing to share some the effects on your blood levels, side effects, and whether you're on modified dose?

    That would be helpful for all of us.

    Thanks! Brigitte
    Brigette, I was told by someone that we only get about 80% as much folfirinox as a normal folfirinox patient would get. I just finished round 84 last week.

    David is between round 50 and 60 I think.

    Personally I feel about like I have the flu for the first two days of my chemo cycle. The third day, I feel better and have been known to drive 400 miles after chemo. David says he feels about the same. but I think he experiences it a day or two later..... BUT, he works full time a building contractor. When he is not hunting, fishing, playing with the grandkids or getting chemo. He don't feel to bad to be VERY ACTIVE!!!

    I go in on every other Tuesday and get my major does of chemo. I wear a bag of 5FU for 46 hours while im home. I go back in on Thursday, get the bag removed and get another dose of CPI613. After every 4 rounds, I get a CT scan and MRI.... SO FAR, ive never had a scan that was worse than a previous scan. My scans show not active cancer.. does show what appears to be scar tissue.
    my CA19-9 has been below 35 since August of 2016.

    David gets his chemo on Monday and Wednesday. He has a different oncologist PLUS the hospital probably could not take both of us on the same days...

 

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