Is anyone participating in a clinical trial for pancreatic cancer?

Posted by lfitz @lfitz, Sep 25, 2022

Is anyone participating in a clinical trial for pancreatic cancer? My husband’s PC is not genetic. He has tried Folfirinox. He was allergic to Oxaliplatin and the Folfiri was not effective. He did Xeloda during his radiation. He did 2 months of Gemcitibine and Abraxane with severe side effects and no good days during the 2 months. It did work well though. He has grade 3/4 neuropathy. He is now stage 4 and only options appear to be no treatment and enjoy what time he has left, a decreased dose of gemcitibine and abraxane , or a clinical trial.

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

@stageivsurvivor

Early in my treatment on Folfirinox for metastatic disease to the liver, I got genetically tested and found to have a gene mutation. When the effectiveness of Folfirinox began waning, I enrolled in a clinical trial in 2014. I had a complete response resulting in NED since.

There are many types of clinical trials that are not dependent on having a gene mutation. There are drugs designed to interrupt/shut down the cell energy cycle of malignant cells. Immunotherapy targeting check-point inhibitors is another area of active research. PanCan.org and LetsWinPC.org have a clinical trials finder as does clinicaltrials.gov. There are several companies that will help narrow down potential trials that do the searches at no charge. Look into the websites EmergingMed.com, CancerCommons.org, myTomorrows.com and Ancora.ai. Clinical trials offer late-stage pancreatic cancer patients the potential for better outcomes.

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Hi
Which trial were you in ? Was your cancer metastasized? Which genetic component did they target ? Just got good news with scan - tumors are shrinking or unchanged even with having to have lower dosage of Gemabraxane and missing a treatment due to low platelets.
Your survival is very encouraging! Thank you for sharing.

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Hi All,

My second Floforinox was pushed back one week due to low WBC. Is time / body only way to regain WBC?

Pancan.org is a good place to start for clinical trials.

At Mayo, your care team can refer you to their trials directly if you meet criteria (one very nice research doctor explained this to me when I reached out directly).

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@sprinter345

Hi
Which trial were you in ? Was your cancer metastasized? Which genetic component did they target ? Just got good news with scan - tumors are shrinking or unchanged even with having to have lower dosage of Gemabraxane and missing a treatment due to low platelets.
Your survival is very encouraging! Thank you for sharing.

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I was in the RucaPANC trial testing the PARP-1 inhibitor Rucaparib (Rubraca) for metastatic pancreatic cancer of either PDAC or PACC origin. Criteria included patients had to have failed one prior therapy and showed sensitivity to a platin-based regimen such as Folfirinox or Gemzar+cis-platin. I was responding very well on Folfirinox and had 24 cycles of it as well as 22 cycles of 5-FU+Leucovorin before entering the trial as study patient#1. Patients with somatic or germline BRCA1, BRCA2 or PALB2 mutations were eligible. I am (g)BRCA2 positive.

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@lvtexas

Hi All,

My second Floforinox was pushed back one week due to low WBC. Is time / body only way to regain WBC?

Pancan.org is a good place to start for clinical trials.

At Mayo, your care team can refer you to their trials directly if you meet criteria (one very nice research doctor explained this to me when I reached out directly).

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My husband gets shots or the overnight Neulasta to increase white blood cells.
He has needed to have this a few times during his six chemo cycles so far.

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have any of you ever had anyone tell you that they never give clinical trials if your chemo is working?

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@stageivsurvivor

I was in the RucaPANC trial testing the PARP-1 inhibitor Rucaparib (Rubraca) for metastatic pancreatic cancer of either PDAC or PACC origin. Criteria included patients had to have failed one prior therapy and showed sensitivity to a platin-based regimen such as Folfirinox or Gemzar+cis-platin. I was responding very well on Folfirinox and had 24 cycles of it as well as 22 cycles of 5-FU+Leucovorin before entering the trial as study patient#1. Patients with somatic or germline BRCA1, BRCA2 or PALB2 mutations were eligible. I am (g)BRCA2 positive.

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what were the side effects of the Folfirinox?

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@pendesk8

what were the side effects of the Folfirinox?

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I had the common side effects of increasing sensitivity to cold, neuropathy in the fingers and feet from oxaliplatin, and diarrhea from the Irinotecan. I never experienced nausea of vomiting and my appetite was very good throughout the 24 months I received chemo.

The neuropathy in the fingers cleared within a year of finishing the treatment. The feet took much longer. I did not notice improvement until 2.5 years after finishing Folfirinox. From that point improvement was slow and fairly steady. it took 7.5 years to fully resolve but I had a very good quality of life despite the neuropathy and made adjustments. Gabapentin relieved any discomfort I experienced. For me, any discomfort from doing Folfirinox was well worth doing it as it contributed to being declared not only NED in 2016 but now cured of stage IV disease.

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@sprinter345

My husband gets shots or the overnight Neulasta to increase white blood cells.
He has needed to have this a few times during his six chemo cycles so far.

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My treatment plan has me getting the shot to increase my white blood 24 hour after every treatment.

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@stageivsurvivor

I had the common side effects of increasing sensitivity to cold, neuropathy in the fingers and feet from oxaliplatin, and diarrhea from the Irinotecan. I never experienced nausea of vomiting and my appetite was very good throughout the 24 months I received chemo.

The neuropathy in the fingers cleared within a year of finishing the treatment. The feet took much longer. I did not notice improvement until 2.5 years after finishing Folfirinox. From that point improvement was slow and fairly steady. it took 7.5 years to fully resolve but I had a very good quality of life despite the neuropathy and made adjustments. Gabapentin relieved any discomfort I experienced. For me, any discomfort from doing Folfirinox was well worth doing it as it contributed to being declared not only NED in 2016 but now cured of stage IV disease.

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Praise God for you being cured.I am starting on a Folfirinox regime next week.I have to come home with a 2 day pump and it will be every other week.I'm praying for no nausea and a good appetite because thats so important.I pray and hope one day I can give a testimony like yours.

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@pendesk8

Praise God for you being cured.I am starting on a Folfirinox regime next week.I have to come home with a 2 day pump and it will be every other week.I'm praying for no nausea and a good appetite because thats so important.I pray and hope one day I can give a testimony like yours.

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Ask your oncology dietician for food choice advice (correct nutrition is super important) and keep your doctor advised of "any and all symptoms and issues". You may want stock up your cupboard prior to infusion day and include some quick and easy things to eat for days you are tired or not up to snuff. Keep a note pad within reach and write everything down or use your phone notepad. This chemo clouds the brain and if you don't write it down you won't remember what to tell/ask your doctor or support group. They have all sorts of treatments for nausea, etc., but you must let them know. Don't be shy. They want this treatment to be successful and they will work with you. BTW, I was freaked out when I was told about the whole pump thing, but it was no big deal. Sending good wishes!

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