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Thread: Finding Clinical Trials

  1. #1
    Super Moderator Top User ddessert's Avatar
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    Finding Clinical Trials

    We all stress out that there are not enough treatment options, but only 4.8% of pancreatic cancer patients do clinical trials. How can we possibly know what is a good clinical trial?

    First, realize that it is extremely rare that you will hear any pancreatic cancer professional talk bad about any other clinical trial - especially in public. It is just not done.

    Second, patient-oriented organizations like PanCan will give you a list of clinical trials, but not any guidance about which ones might be best for you. They defer all those details to your oncologist.

    Third, my experience with most oncologists is that they are excited to tell you about their clinical trials and ones available at their institution, but no others. With so few patients willing to do clinical trials, they’re probably reluctant to let you go somewhere else. After all, their prestige and advancements are dependent on getting published and clinical trial publications are highly desired.

    So, what are you going to do? You’re not an expert on this. Who do you trust?

    Some organizations like Let’s Win Pancreatic Cancer do write stories about ongoing clinical trials. The secret here is that they will only write about clinical trials that their expert advisory board considers promising. So if they wrote about it, they found it promising. Unfortunately, they cannot write about all the promising clinical trials, so if they did not write about it, it does not mean it is a bad one. So this is a little helpful.

    SmartPatients lists clinical trials on their site, but there is also a patient discussion area for each one. Some patients in the trial may comment or others will ask questions about the trial asking for inside information. Certainly not every trial has information, but often someone will respond with more information about the trial.

    Clinwiki is a non-profit organization that is trying to build a Wiki of clinical trials, built mostly with information from the patients and their families. It started with one or two cancers but is looking to add more. While it is in its infancy, it shows promise and may be worth a look just in case.

    PanCan.org has their Know Your Tumor program that tests (molecular and genetic) a biopsy of your tumor to look for promising treatments. This can be an excellent springboard for you to find a treatment.

    If you are scientifically-minded, PubMed can be a great resource. If I am researching a specific treatment, I can find previously published clinical trial results using that same treatment.

    For pancreatic adenocarcinoma, start with this link. In the Search box, add the name of your treatment after the words “pancreatic adenocarcinoma” and hit the Search button. Now at the left side bar at the top, look for the section titled Article types and click on “Clinical Trial”.

    Now you have a list of all the research publications reporting on human clinical trials using that treatment. Clicking on each one will provide you with an abstract summary of the paper. If it says Free PMC Article you can get the entire article by clicking on those words.

    If you are curious for another point of view, it can be very interesting to look at the quarterly and annual reports of the companies that make the treatment you are interested in. You should keep in mind that these reports are often tailored to the stockholders and will present some of the “rosiest” details. But there is often information there that has not been published in the scientific journals yet, if it ever does get published.
    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

  2. #2
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    This is a great chunk of advice for finding relevant trials. Let me add - don't be shy about calling the contact person listed at the bottom. They usually have more information about the trial you can get over the phone.
    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
    - Ca-19 up to over 6,000
    April '19 - Started 5-fu, Abraxane, Oxaliplatin
    Ca-19 down to 600, missing many doses due to
    low platelets
    Aug '19 - Started Irrinotecan, abraxane, cysplatin
    missing doses, low platelets
    Sept '19 - Ca-19 holding steady, ct scan shows 2 small
    lung nodules - 3mm, 5mm, blood clot in pulmonary
    vein, primary and liver mets stable started blood thinner
    Oct. '19 Switched back to POLF treatment - Paclitaxel,Oxaliplatin,
    Leucovorin, 5FU

  3. #3
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    Thanks so much, ddessert for this info. This is exactly where I find myself right now. I have molecular profiling results but little to no guidance in what to do next. I've read through the details of countless trials, learned a lot of terms along the way, but haven't found anything that seems to be a fit. And my oncologist is of little help (other than scanning through the MD Anderson database on trials... and she didn't find anything suitable).

  4. #4
    Super Moderator Top User ddessert's Avatar
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    Your MD Anderson oncologist has probably already reviewed this, but here is one of the places to look for treatments based on mutations.

    https://www.cancer.gov/about-cancer/...ed/nci-match#e

    Another is to contact PanCan.org for their help. I’ve found them to keep the information at a very high level which is not that useful if you’re looking for and trying to learn about this yourself.

    PubMed can also be a resource to look up specific mutations and pancreatic cancer. Many of these results will be early lab results, but perhaps can give you another line of research.
    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

 

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