Is anyone participating in a clinical trial for pancreatic cancer?

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!

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.

I am at a crossroads and find it a somewhat difficult out decision.
I qualify for one that will require me to stop the chemo that is currently working well. Perhaps that means it’s a great time to try a possible cure.
Or perhaps I could be derailing myself .

I am healthy, active and working. I’m told the side effects have proven to be minimal. Have you faced these decisions?

I am at a crossroads and find it a somewhat difficult out decision.
I qualify for one that will require me to stop the chemo that is currently working well. Perhaps that means it’s a great time to try a possible cure.
Or perhaps I could be derailing myself .

I am healthy, active and working. I’m told the side effects have proven to be minimal. Have you faced these decisions?

Most “standard of care” (SoC) treatment regimens are just that-standard. You get standard results and for pancreatic cancer, the statistics are out there on achieving long-term survival and cure.

My professional experience has been in the fields of clinical cancer, immunology and stem cell research. When I got my diagnosis in 2012, I knew right from the start that it was going to take a clinical trial to achieve something better than standard. So I started looking for a clinical trial shortly after my Whipple procedure. The trial search became more urgent when I was diagnosed with metastatic disease in the liver as the first chemo regimen failed.

Now it was a race against time as it was likely the second chemo would stop or the side effects would have a significant impact on quality of life. The things to be aware of with clinical trials- they require the participant to meet eligibility requirements based on physical assessment, blood chemistry and hematology parameters. All phase I trials are open label meaning you get the test compound. No one is assigned into a control group receiving the current SoC treatment. Phase II can be either open label, single or double blinded and may have a control group. If the trial is randomized, it is done by computer so the participant has no say in the matter. And if double blind, you nor the oncologist will be aware if you are receiving the SoC treatment or the test drug until the trial is concluded.

So things to consider are: time you have been on SoC and what is the percentage of shrinkage of tumor(s) now compared to prior scans? Are they slowing down or no change in tumor(s) meaning stable?

How often has a trial that you meet the criteria for been offered?

Is this a phase I/II trial where you will receive the drug and automatically move into phase II if phase I testing is successful?

Is it starting off as a phase II trial with or without a control group where it is a randomized trial? Regardless of whether it is randomized or not, is it single-blinded or double-blinded? If it is a new class of drug for which there is no comparison, the phase II portion will not be randomized or blinded. This was the situation I had where the trial was not blinded so I as well as my oncologist knew the drug was being administered.

Is it phase III where the trial most likely be randomized?

Earlier phase (I &II) trials have more stringent requirements on physical assessment. Phase III trials will take less healthy participants but you are then contending with a randomized trial of not knowing if you will be in the test or control arm.

If the trial doesn’t work, you may still have other SoC treatments to fall back on and they won’t have as stringent a requirement on physical assessment.

It took me more than 14 months of searching until an ideally-suited trial opened. My chemo was still working but for how much longer was anyone’s guess. It was Folfirinox and I did 24 cycles of it at full dose of the higher, first generation of it. It was alternated with 22 cycles of 5-FU/Leucovorin. I had chemo induced peripheral neuropathy as my worst side effect, with other not-so-pleasant side effects. The combination of the inordinate amount of chemo I did (well beyond standard of care) followed by the clinical trial achieved the desired goal not only of N.E.D., but cure. June will mark 12 years of an event no one thought possible when I started out on this journey. No one ever thought it possible to cure late stage disease by chemotherapy and a targeted trial. Now there is increasing reports it is possible to achieve albeit still a small number. No one knows who will become an “exceptional responder” as the NCI classifies them. A clinical trial gave me my life back and I am not only surviving, but thriving.