Phase II, Single Arm Study of BGJ398 in Patients With Advanced Cholang
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Jean Marie…….I am sorry. I have been thinking of you and Jeff so much. My heart hurts for you. I know the love you have for Jeff is so strong….praying for your comfort and peace….all my love to you.
MelindaDear Jean-Marie,
I am so sorry to hear that Jeff has passed away. There is nothing to be said that will make it better right now, but know that I am thinking of you and your family. Take some comfort in knowing that he is no longer in pain or suffering. Keep him with you forever in your heart and memories of your life together. I have been where you are now and as hard as it is right now, it truly does get better with time. The pain will ease some in time and although it never really goes away, it does get better. Take care and know that we are here to help and support you in any way that we can at this sad and trying time.
Hugs,
DarlaDear Jean-Marie,
I am so very sorry indeed to hear of the passing of your dear Jeff. Please accept my sincere condolences. I wish there were words that I could say that would help ease the pain you feel right now. My thoughts are with you and your family right now.
Hugs,
Gavin
Jean-Marie,
I feel such saddness for you. I know you did everything in your power to keep your Jeff with you…to get the best possible care for him. We always wonder if we could have done more, but that is second guessing, Please know that our hearts ache right along with you, as they do every time we hear that someone has lost their war with CC. But no one can know your personal grief. There are many, unfortunately, on these boards, who have lost their loved ones to this cancer and I’m sure they’ll be along soon to post a note to you.
Hugs,…Julie T.
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’m glad I happened upon your post. I am trying to make a decision about going on the BGJ398
clinical trial, but after reading your post, it doesn’t sound promising.I’m grinning from ear to ear and doing a little happy dance right now for you, Jean-Marie. Hope the news gets better and better.
Hugs,
Julie T.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!
Jean-Marie,
Sorry to hear the news from Jeff’s scan results. I know that it is not the news that you wanted to hear but please do not give up hope here. My fingers are crossed that Jeff can get on to the immunotherapy trial. Please know that we are all here for you and hoping for some good news for you and Jeff.
My best to you both,
Gavin
Jean-Marie, It seems to me that besides being lucky….the way to get maintain or even get ahead of CC is to be persistent, to not be afraid to dump what you’re doing and go on to something else, and to not be afraid to seek out different doctors and opinions…and to read, read, read…looking for whatever it out there, treatments that often aren’t well known. You are doing that and I applaud you for taking the bull by the horns. I wish the scan news had been better, but if that trial wasn’t meant to work it is time to move on anyway. I don’t have a lot to add regarding treatment beyond Gem/Cis, but I wanted you to know that……You’re doing a fantastic job as a caretaker. Hugs!
Julie T.
Dear Jean-Marie, thank you for the update although it is not what we were looking forward to hearing. You are an outstanding Caregiver and fighter and I am hoping for the best for you both. Please keep us posted as we all really care.
jtaylor…..this cancer can be very resistant to one treatment and response well to another. Keeping everything crossed that you will receive a response real soon.
Please keep us posted, we are in this with you.
Hugs,
MarionFollow 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.
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