BGJ398 Trial update
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Thanks for that Katrina, great news! And not being able to see any signs of tumours, I love it!! Please let us know how things continue to go for you.
Hugs,
Gavin
Katrina….incredible, wonderful news. Thrilling to hear of your wonderful response. Congratulations.
Would you please be so kind and place this news in this thread as well?
http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=103636#p103636Much appreciated, dear Katrina. The above mentioned link has been viewed in access of 5 thousand times making it one of the most watched clinical research studies on this site.
Hugs,
MarionMy goodness, this BGJ398 is still working for me after 12 months of taking it.. I lost a good percentage of tumor with it, then it more or less stabilized it. But my last CT/PET could not see any sign of a tumor in a lymph node in my gastric area. Amazing. They are going to re-reviewi the radiologists notes on the small lymph node near my left clavicle. I’ll report on that later. But this progress even after I needed to take an extra week off for 3 months due to some side effects that had built up. I’ll update you after it goes to the Tumor Board! Course, this will make the scientists scratch their head.
Hi Mike; There are people on the trial and it seems to work for 8-10 months with few side effects except bothersome high phophate levels. After the above said months (which is an aveage), people have growth or new tumors/lesions. While on the drug, patients have reported 30-40% shrinkage of tumors or stability of disease. I was on it for 8 months before an arotocaval lymph node popped up.
Oh, Patty, in no way do I believe that something is being held from us and much understand the importance of interacting with someone undergoing same treatment for same disease and the ensuing comfort of retaining one’s privacy. And, so it should be. Perhaps others in this Facebook group would like to join our site and add content to the designated thread for this trial. Or, we can try to make sure that everyone on this trial – visiting our site – is made aware of your special group and perhaps be given the opportunity to join your group. We also can link the Facebook site to the Cholangiocarcinoma Foundation Either way, the most important issue is for others participating in this trial to be able to connect with people in similar circumstances.
Thanks for always being there for us. I regularly read your blog and wish for the absolute best heading your way.
BTW: I am a bit dismayed to hear that no CCA patient has been accepted in the MATCH trial. Our cancer has applicable mutations and I wonder where the breakdown is happening. Is it simply a fact of coincidence only? I will investigate further.
Hugs
MarionMarion~
At first it started with about 7 of us messaging each other via Facebook that were at MD Anderson on the trial. Then other people wanted to join it. I started it just so the first 7 of us could see each others posts about phosphate levels, scans, side effects, etc. I in no way intended to keep it from anyone. People feel at ease that no one but “our little group” could see the posts. There are currently two new people who have just recently went on the BGJ398 in conjunction with another agent/drug. I now wish I had put it on your site because it would have been there for everyone to find……any suggestions on how to transfer it to the CC page. I would contact all the members to make sure they were ok with me doing that. I do not have a problem with it one bit!!Hope we can get it on the CC website for everyone to see……what’s your suggestion?
Best Regards,
Patty CorcoranPatty….so thrilled to know of a group focused on this drug. Do you know why this group doesn’t join our discussion forum or at least let our patients link to their social media?
Hugs,
MarionKatrina, It is GREAT you are doing SO well on this trial. I made a private web page so we could all share our experiences. If you friend me on Facebook, I can send an invite to you to be in the group. You can then accept and be a part of this private group. NONE of your Facebook friend can see your posts ONLY people who have been on this drug. Good luck on the trial. I was on it for 8 months with great success before they found a few enlarged lymph nodes and took me off the trial.
Hi all. On the BFJ 398 trial at MD Anderson: Just a quite note as I’ll have more test info in a few weeks. I have been using BFJ 398 Trial at MD Anderson since about mid (?) August 2016. My second scan in early December showed further reduction of the 3 malignant metastasized lymph nodes. A clinical nurse said that is about 40% reduction total. I am not sure about her estimate as the 1st time, some of them were just called “stable,” but I am therefore optimistic about my next test. I frankly don’t know much about their expectations, or if anyone has gotten to zero and how long they continued treatment after that — or went on a “maintenance” dose.
On side effects: My top hair thinned more on top and I just heard about Toppers and a few lower extensions I might investigate. I have learned what all to help avoid or treat those little mouth sores (with white heads). in mouth or tongue. I have lost 30 pounds which looks good on me, but I (and they) don’t want me to lose one pound more and I really have to make effort to find the things I can eat that are 1) okay to eat 2) don’t taste bland or 3) don’t sting in my mouth 1/2 through the 3 week out of 4 treatment. Also, some things that help preserve my nails. I always turn to the internet and then specialists to address it as the oncology people aren’t as much into side effects as they are into saving your life.
I heard there was a Facebook site for our BBGJ 398 trial people, but I don’t know how to find it. Does anyone know?
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