Accessing clinical trials

Portal Forums Cancer Basics Clinical Trials and Drug Development Accessing clinical trials

This topic contains 2 replies, has 3 voices, and was last updated by Dr West Dr West 3 years, 9 months ago.

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November 16, 2014 at 9:48 am  #1267175    


My next step after Tarceva is either AZD9291 or CO1686 respectively. I have not been able to find step by step processes for accessing a trial. I have been researching on my own and I would like to line things up before actual progression.
Does it start with the doctor advocating for the patient? I have mentioned trials to my physician and he does not seem enthused. He actually mentioned afatinib because it’s FDA approved. What impact does a clinical trial have on the treating physician or practice? I thought financially it would be beneficial as the treating physician is only responsible for paying for routine scans.
Any hints would be great.

November 16, 2014 at 10:00 am  #1267178    
JimC Forum Moderator
JimC Forum Moderator

Hi lolo,

The process can work either way. At times your own doctor helps you find a trial and communicate with the trial staff, but sometimes you find your own trial and contact them directly. Usually your own doctor remains involved. The trial sponsor usually pays for the study drug and anything else required by the trial that is not normally covered by insurance, but that’s something that you’d need to discuss with the trial staff for the particular trial you’re considering.

If you want help locating an appropriate trial and your doctor isn’t helping, you may want to consider a second opinion, preferably from a doctor at an academic institution (teaching hospital).

If you make the initial contact yourself, you will speak to a trial coordinator and will likely be given an appointment to discuss the trial and review your case. Your doctor’s office/cancer center will need to forward your medical records to the trial staff prior to that appointment.

Good luck.

Forum moderator

Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then:

November 16, 2014 at 10:05 am  #1267182    
Dr West
Dr West

If an oncologist doesn’t have trials there, or the particular trial that would be best for the patient at their center, that means the patient would do elsewhere to pursue the trial. In other words, the doctor needs to send his patient away to another doctor — i.e., lose business. It’s not uncommon to have patients decide to stay at the more specialized center doing trials not only for a clinical trial but also for other treatment — they may decide to stay because their doctor running the trial also has a particular expertise in their cancer, for instance.

Though it’d be nice to expect oncologists to refer patients to other centers to pursue clinical trials, that’s not something that is going to happen universally. A lung cancer specialist at an academic center or larger cancer center would likely be a far more productive source of information about clinical trial options, whether at that center or elsewhere.

Good luck.

-Dr. West

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