1. < Pancreatic Cancer

Help Finding Clinical Trials

Posted by bethf @bethf, May 3, 2023

Having applied for a couple of trials and searching for new ones, I now realize I need help navigating these clinical trial options and doing this takes a great amount of time and expertise. I am doing as much as I can on my end, but it is overwhelming and I need more help. I am now having a recurrence and am considered Stage 4 so I am keenly aware that time is of the essence and the windows of opportunity for me to get into any trials are closing rapidly.

I think what I really need is to personally hire a part-time or full-time person to navigate through clinical trials. Do you know someone or have any recommendations on how to find someone (located anywhere), who has the expertise and can take the lead in determining appropriate trials and making direct contact with study coordinators and principal investigators to expedite the determination of my eligibility, the availability of slots, and guide through the process? Would this role be called "clinical coordinator" or something else?

If you have any suggestions about how to find someone I can personally hire to help me, I would be most grateful. StageIVSurvivor, perhaps you know someone or how to find someone?

Beth

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

pendesk8 | @pendesk8 | May 25, 2023
In reply to @askretka "In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC..." + (show)
@askretka

In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC patients, which is one of the worst cancers, and 3/3 “safety run-in” patients showed about 50% reduction in their tumor sizes in just 4 months!This is great 🙂

Early days by Oncolytics Biotech and Roche.

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I am going for a trial screening at NCI in bethesda,md for a ATM gene mutation in june,I have been trying to get into one for almost a year.

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1 reply
pendesk8 | @pendesk8 | May 25, 2023
In reply to @stageivsurvivor "The trial was RucaPANC for maintenance monotherapy and targeted BRCA1, BRCA2, PALB2 mutations using the PARP-1..." + (show)
@stageivsurvivor

The trial was RucaPANC for maintenance monotherapy and targeted BRCA1, BRCA2, PALB2 mutations using the PARP-1 inhibitor Rucaparib (Rubraca).

More details on the trial-

PARP STUDY AT PennMedicine
https://ascopubs.org/doi/10.1200/PO.17.00316
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6057747/
This is a YouTube video of my case by pancreatic cancer oncologist Dr. Kim Reiss-Binder at PennMedicine. It starts at time stamp 1:00 and the conclusion is at the end of the presentation.

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I am going to NCI in bethesda ,Md in june for screening for a clinical trial for my ATM gene mutation.

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tra418 | @tra418 | May 26, 2023
In reply to @pendesk8 "I am going for a trial screening at NCI in bethesda,md for a ATM gene mutation..." + (show)
@pendesk8

I am going for a trial screening at NCI in bethesda,md for a ATM gene mutation in june,I have been trying to get into one for almost a year.

Jump to this post

My husband has that gene mutation.But his cancer is bile duct .Never see anything about it or hear anyone else with this rare gene .They believe he may have gotten liver fluke parasite in Vietnam.Can you send me any info you have found ??Thank you& Good luck ♥️🙏

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1 reply
gamaryanne | @gamaryanne | May 26, 2023
In reply to @askretka "In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC..." + (show)
@askretka

In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC patients, which is one of the worst cancers, and 3/3 “safety run-in” patients showed about 50% reduction in their tumor sizes in just 4 months!This is great 🙂

Early days by Oncolytics Biotech and Roche.

Jump to this post

I have only the KRAS mutation and was NED as of April 29 from stage IV 12/2021.
Does anyone know of a trial outside of the ones at Univ of PA?

REPLY
markymarkfl | @markymarkfl | May 26, 2023
In reply to @askretka "In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC..." + (show)
@askretka

In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC patients, which is one of the worst cancers, and 3/3 “safety run-in” patients showed about 50% reduction in their tumor sizes in just 4 months!This is great 🙂

Early days by Oncolytics Biotech and Roche.

Jump to this post

@tra418 , I also have the ATM mutation with my pancreatic cancer. I understand it has similar impact on DNA Damage Repair (DDR) as other gene mutations like BRCA1, BRCA2, PALB2, and is sometimes treated with drugs (PARP Inhibitors?) targeting the DDR function.

@gamaryanne , I think the KRAS mutation is more common in PC. I've seen trials and stories specifically targeting KRAS, but the only link I have handy is this one: https://www.nbcnews.com/health/health-news/gene-therapy-pancreatic-cancer-experimental-approach-shrank-tumors-one-rcna31437 . That might be the same treatment / story originating from U of PA, but with another researcher working on it in Oregon.

I've heard oncologists refer to "tumor agnostic" treatments in the context of modern, targeted therapies. Instead of focusing so much on the organ where the primary tumor originated and the traditional "cancer type," they're focusing on the "cancer biology" -- specifically mutations in the DNA and drugs that will target those cancer cells wherever they may roam.

"May we live in interesting times!" 😉

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2 replies
tra418 | @tra418 | May 26, 2023
In reply to @markymarkfl "@tra418 , I also have the ATM mutation with my pancreatic cancer. I understand it has..." + (show)
@markymarkfl

@tra418 , I also have the ATM mutation with my pancreatic cancer. I understand it has similar impact on DNA Damage Repair (DDR) as other gene mutations like BRCA1, BRCA2, PALB2, and is sometimes treated with drugs (PARP Inhibitors?) targeting the DDR function.

@gamaryanne , I think the KRAS mutation is more common in PC. I've seen trials and stories specifically targeting KRAS, but the only link I have handy is this one: https://www.nbcnews.com/health/health-news/gene-therapy-pancreatic-cancer-experimental-approach-shrank-tumors-one-rcna31437 . That might be the same treatment / story originating from U of PA, but with another researcher working on it in Oregon.

I've heard oncologists refer to "tumor agnostic" treatments in the context of modern, targeted therapies. Instead of focusing so much on the organ where the primary tumor originated and the traditional "cancer type," they're focusing on the "cancer biology" -- specifically mutations in the DNA and drugs that will target those cancer cells wherever they may roam.

"May we live in interesting times!" 😉

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Thanks Mark .We sure do ,thank God!♥️🙏

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pendesk8 | @pendesk8 | May 26, 2023
In reply to @tra418 "My husband has that gene mutation.But his cancer is bile duct .Never see anything about it..." + (show)
@tra418

My husband has that gene mutation.But his cancer is bile duct .Never see anything about it or hear anyone else with this rare gene .They believe he may have gotten liver fluke parasite in Vietnam.Can you send me any info you have found ??Thank you& Good luck ♥️🙏

Jump to this post

Mine is Heriditary and came down through family.apparently my fathers side.My grandfather,father and brother have all died of cancer in their 60's.Mine is also in my bile duct,I understand that is where it usually is.

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1 reply
k13 | @k13 | May 27, 2023
In reply to @stageivsurvivor "Finding a clinical trial can be a daunting task requiring perseverance. Precision Medicine (molecular profiling by..." + (show)
@stageivsurvivor

Finding a clinical trial can be a daunting task requiring perseverance. Precision Medicine (molecular profiling by Next Generation Sequencing [NGS] and liquid biopsies) to reveal possible gene mutations driving the cancer helps in narrowing the focus for using Targeted Therapy directed at the mutation. Even with that info, searches can be daunting reading through the scope of the trial and the inclusion/exclusion criteria.

Besides clinicaltrials.org, PanCan.org has a search page and case managers you can call (877.272.6226, M-F, 7:00am-5:00pm PT) that work with staff at CancerCommons.org to do the time consuming work in narrowing down the list of potential trials. LetsWinPC.org partners with EmergingMed.com that also has a staff you can speak with to get more clarification of a specific trial. myTomorrows.com is another clinical trial finder service and the staff takes it a step further- they will help with the enrollment process making the phone calls to principal investigator/ clinical trial nurse coordinator so everything is done and a potential participant just needs have an eligibility exam and to read through and give informed consent. All the services through the above search firms are free of charge.

From personal experience, I had molecular profiling done early on. That allowed me to focus my search. Still it took 14 months to find the perfect fit between between aspects of my case and the trial. I searched clinicaltrials.gov and PanCan.org weekly. As a former cancer researcher, I also was perusing the American Society of Clinical Oncology website one weekend as their annual meeting was underway. I saw an abstract just posted of a “proof of concept” trial detailing the results of the two participants. The abstract hinted a clinical trial was to result from the data.

I called clinicaltrials.gov and they knew and had nothing about it. Same for PanCan.org. So using the internet, I found contact info on the first author of the paper and called PanCan.org if they would call and make the introduction about my case. They did and that led to being the first enrolled in the trial and going on to have a complete response, achieving NED status 6.5 years ago and recently being declared cured using chemotherapy 10.5 years after having stage IV disease.

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What gene mutation did you have and what drug did you take in your clinical trial? My husband has the KRAS gene and two other mutations.

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mamarina | @mamarina | May 28, 2023
In reply to @markymarkfl "@tra418 , I also have the ATM mutation with my pancreatic cancer. I understand it has..." + (show)
@markymarkfl

@tra418 , I also have the ATM mutation with my pancreatic cancer. I understand it has similar impact on DNA Damage Repair (DDR) as other gene mutations like BRCA1, BRCA2, PALB2, and is sometimes treated with drugs (PARP Inhibitors?) targeting the DDR function.

@gamaryanne , I think the KRAS mutation is more common in PC. I've seen trials and stories specifically targeting KRAS, but the only link I have handy is this one: https://www.nbcnews.com/health/health-news/gene-therapy-pancreatic-cancer-experimental-approach-shrank-tumors-one-rcna31437 . That might be the same treatment / story originating from U of PA, but with another researcher working on it in Oregon.

I've heard oncologists refer to "tumor agnostic" treatments in the context of modern, targeted therapies. Instead of focusing so much on the organ where the primary tumor originated and the traditional "cancer type," they're focusing on the "cancer biology" -- specifically mutations in the DNA and drugs that will target those cancer cells wherever they may roam.

"May we live in interesting times!" 😉

Jump to this post

https://baptisthealth.net/baptist-health-news/clinical-trial-at-miami-cancer-institute-helping-extend-survival-for-pancreatic-cancer-patients
Here a new clinical trial I think in phase 3

REPLY
markymarkfl | @markymarkfl | May 28, 2023
In reply to @askretka "In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC..." + (show)
@askretka

In simple words, we gave a combination of drugs ( pelareorep+ atezolizumab and chemo) to mPDAC patients, which is one of the worst cancers, and 3/3 “safety run-in” patients showed about 50% reduction in their tumor sizes in just 4 months!This is great 🙂

Early days by Oncolytics Biotech and Roche.

Jump to this post

@mamarina , Thanks for that very encouraging link! I had read a study from several years ago (Stanford, iirc) where they found intra-arterial delivery in mice with pancreatic cancer achieved the same effect as traditional chemo delivery with about 1/300th the typical dose, meaning very little in the way of side effects.

It's awesome to see this moving not only from mice to humans, but with the added pressure from the balloons helping the meds penetrate that nasty stroma in such a non-invasive way.

Unfortunately, that doesn't appear to be an option for distant/multiple metastases. CRS + HIPEC (Cyto-Reductive Surgery + Heated Intra-Peritoneal Chemotherapy) is "conceptually" similar in that it attempts to deliver chemo directly to the tumor(s), but from the outside-in. Pretty invasive/risky and somewhat controversial from what I hear. Hope someone w/ more knowledge about this can share.

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