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.

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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@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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Welcome, @askretka. Do you have pancreatic cancer? Are you looking into clinical trials?

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@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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Looks like a very small evaluation with just 3 patients. While interesting, I gather it is a very long way from Phase 1/2 clinical trials?

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@colleenyoung

Welcome, @askretka. Do you have pancreatic cancer? Are you looking into clinical trials?

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Don't have cancer doing some research for someone else.

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clinical trials.gov has the approved trials and a list of inclusions and exclusions.

I am looking at clinical trials but nothing so far that I will qualify for.

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@cathyras

clinical trials.gov has the approved trials and a list of inclusions and exclusions.

I am looking at clinical trials but nothing so far that I will qualify for.

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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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@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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To Stage 4 Survivor
Had your cancer metastasized to liver ? My husband’s has and after 7 cycles of Gemcitabine and nabpaxitel with pamrevulab as the investigational drug his tumors have started to shrink and his CA 19-9 is at 298 from over 4500. Lots of platelet issues now and reduced dosages so always looking for what is next. No resection possible.
Thank you so much for all that information !

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@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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I need to call PanCan. I am some what involved. I attend survivor meetings and I did Purple Stride last year. I'm planning on doing it again this year.

I think my case is a little unique. I had cancer on the tail of my pancreas. Stage 2b After 6 months of chemo I had a clean PET. But over time my CA 19-9 started to creep up. I had another PET and showed a recurrence at the site where I had the surgery. More chemo almost a year and some radiation. Clean PET once more. Two months later back again in the same exact spot. I had another round of radiation and just started chemo Nov 7. No signs of it spreading anyplace else. So trying to find clinical trials has been extremally difficult.

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@cathyras

I need to call PanCan. I am some what involved. I attend survivor meetings and I did Purple Stride last year. I'm planning on doing it again this year.

I think my case is a little unique. I had cancer on the tail of my pancreas. Stage 2b After 6 months of chemo I had a clean PET. But over time my CA 19-9 started to creep up. I had another PET and showed a recurrence at the site where I had the surgery. More chemo almost a year and some radiation. Clean PET once more. Two months later back again in the same exact spot. I had another round of radiation and just started chemo Nov 7. No signs of it spreading anyplace else. So trying to find clinical trials has been extremally difficult.

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Besides calling PanCan, look up the phone numbers on the search sites EmergingMed.com, CancerCommons.org and myTomorrows. Let all three do searches simultaneously as there is no charge for them. This may improve the odds in someone finding that unique trial.

Reoccurrence in the remaining pancreas, especially in the surgical bed is not uncommon. Ablation using techniques like NanoKnife/IRE is being used as a treatment. Dr. John Chabot who is the Chief of Surgery of the Columbia Presbyterian Pancreas a center in NYC has expertise in this area and it may be worth contacting for a consultation.
https://columbiasurgery.org/john-chabot-md-facs

REPLY
@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.

Jump to this post

why isn't this FDA approved yet for pancreatic cancer?trails were 6-10 years ago and still no FDA approval.What was the trail for?

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