andreafp
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I’d like to add to my previous “intro” post that if your clinician has recommended Pemazre as a potential treatment option for you, that the drug company has a website where the information is laid our for the doctor and the patient to fill out forms to apply for financial assistance to pay for the cost of the drug, if needed.
To learn more, you can click on the link below. NOTE: even though the website currently states that Medicare patients are excluded from applying for the IncyteCares assistance program, that policy has been changed. MEDICARE patients can now apply as well to see if they are eligible for financial assistance to cover the cost of the drug. They will be updating their website with the details about the steps medicare patients and their clinicians need to take to apply—I don’t have a written/electronic source to point you to to confirm this yet. However, I received verbal confirmation from Nessie, an Incyte employee who is one of the folks who helps patients over the phone to go through the application process.
The patient cannot apply directly to the drug company to ask for expanded access/compassionate use either in the U.S. or in the U.K. You are in the UK, correct?
Steve was accepted into FIGHT302 and randomly assigned to the chemo arm—which he has definitely decided he will not do, correct?
Chances are low that an oncologist would agree to apply for Expanded Access for pemigatinib. Patients or caregivers cannot apply to the company directly.
Chances are low that the drug company would agree to provide pemigatinib through expanded access without him having done the standard of care chemo first.
If he refuses to do Cisplatin and Gemzitabine and won’t change his mind, would he consider another FGFR2 inhibitor? If so, you could look at whether there is a trial site near you for PROOF (2 arms….either chemo or infigatinib which is an FGFR2 inhibitor) and hope that he gets randomly assigned to the infigatinib arm of the trial. Here’s the link for open Cholangio trials in the UK including the PROOF trial — https://ammf.org.uk/clinical-trials/
Has Steve’s doctor talked to you and Steve about how much longer he feels comfortable having Steve without treatment? Has the doctor talked to Steve honestly about what the risks are the longer he doesn’t have treatment? Has Steve said to his doctor, “if I refuse to do chemotherapy, and can’t get access to an FGFR2 inhibitor, what other treatment would you recommend I do first?”
Hi everyone–
I”ve been on this trial at the Mayo Clinic in Scottsdale, AZ since July 3rd. First CT six weeks into the trial showed 18 percent overall shrinkage. The 2nd CT twelve weeks into the trial showed no real shrinkage but everything did remain stable. I’m the 3rd person enrolled in this trial site and they are still recruiting. Dr. Mitesh Borad is the PI at this site (he’s also on the Cholangiocarcinoma Advisory Board/active in this organization) and he’s. also the oncologist who now oversees my care.
So far, the side effects have been manageable (stiff joints in my hands–most pronounced when I wake up), hair loss, dry eyes/nose). I’m glad to have found this discussion group.
–Andrea
