jtaylor1112
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My husband was the first on the trial; maybe others have had better success. But if I had it to do over again, I’d have wanted him to be in the NIH immunology study or a PD-1 study. After my Jeff tried the BGJ398, he was too far along to qualify for any other studies. He died Nov 17 and everything but my body died with him.
I am at the Hail Mary stage for my husband but have been told the MK-3475 study is now closed to cholangio. Anyone else hearing that?
Marion, I was told that all the cholangio spots in the Phase I trial you referenced have been filled. Has anyone else been told this?
You are all so right. I just got a call from the immunology study nurse, and I’ve gone from despair to singing Les Miz’ “One Day More”. That butterfly of hope flies once again!
wow, these posts all really echo how I’m already feeling, and my love still has a few months left. I feel like I’ve always known I was too lucky and I’d know this grief some day. I’ve been blessed to have 26 years with this wonderful man, and I’ve signed every card, “One life, one love.” I’d always told him that when he went, I was going with him; but he’s asked me to stay to represent him and keep his memory alive with friends and family. And he knows I have to stay to take care of a disabled sister. But I really don’t want to. I’m scared. Knowing what’s coming, I don’t know how I’ll get thru it.. Like you’ve said, the future seems unappealing.
Follow up: Jeff’s first scans since starting this study 8 weeks ago was yesterday and the news is bad. Altho the tumors in his lungs shrank a bit, the ones on his sternum and in his liver have grown. He’s out of the trial, so I immediately called the numbers Marion gave above . Praying he’s accepted, but Dr Javle at MDA said acceptance into immunology trials is often based on the patient’s strength, and Jeff’s is no longer great. I’ll be trying but I’m worried. Still, I wdn’t have known about Melinda’s study without these boards. Even Dr Javle didn’t know they were recruiting. So thank you all so much.
His diet is a low-phosphate diet, Marion: no nuts or peanut butter; no whole grain breads; no milk, yogurt, ice cream, hard cheeses; no chocolate; etc. Thank you for the contacts; I’ll contact them tomorrow! If he has to leave this study (and maybe he won’t), maybe NIH will accept him. Thank you so much!
Jean-Marie
One of the side effects of this drug is that phosphate levels get too high. MD Anderson started the trial with my husband taking a drug to lower the phosphates as well as a low-phosphate diet. He ignored the diet for the first week, and his levels were twice what they should have been. They doubled the phosphate meds and he adhered to the diet, but although his levels dropped some, they didn’t drop enough. They are taking him off the study drug for a week; if he is then where he needs to be, they will restart him on the study drug but at only 80% of the original strength. Also, he felt pretty good the first week of the trial but this week feels bad in every way. More pain (they’ve increased his pain meds today); nausea for the first time since diagnosis (they prescribed a drug for that); and more fatigue. I wonder if he had observed the diet his first week if his phosphates wd have gotten as high; but no amount of nagging could keep him on diet. I’m feeling very discouraged that we’ll have a good outcome and think I should start looking for other trials to prepare for the worse, which will be in a month when he has his first scans.
Why isn’t NIH doing a lot more studies of the procedure Melissa had, given her tremendous success, does anyone know?
Kris, my husband was diagnosed with cholangiocarcinoma on August 2 and is being treated at MD Anderson. It had metastasized to his sternum so in January they removed half his liver and most of his sternum, but his margins weren’t clean. The gen/cis that he’d had success with before surgery didn’t work after, and it spread to his lungs, hip, and spread in his remaining sternum and liver. Dr Javle put him on FOLFIRINOX but, after one treatment, a clinical trial came open that Dr J felt would be of better benefit. I posted this trial on the Clinical Studies part of these discussion boards; it is Phase II, Single Arm Study of BGJ398 in Patients With Advanced Cholangiocarcinoma. He will begin this on July 23.
He had been on Oxycotin & Oxycodone but they weren’t doing the job, so yesterday they switched him to methadone w hydromorphone for breakthrough pain. He also was just put on Lyrica for pain remaining from the surgery. Granted, he just started these new meds, but after 24 hrs he doesn’t feel any better.
The pain has really impacted his quality of life, of which he feels he has none. We’ll continue working w the pain mgt docs at MDA, but I’m anxious to move forward with other methods too to help him feel better.
