Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial
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Dear Bostonguy,
My thoughts are with you and your family. I’m so sorry that this disease has caused so much suffering.
Take care,
CatherineBostonguy,
I am real sorry to hear this news about your mum and wish that I could say something that would help right now. I know that hospice will take great care of your mum and her comfort is of the utmost importance. Please know that we are all here for you.
My best wishes to you and your mum,
Gavin
bostonguy….I am so sorry to hear of the turn of events. With hospice tending to her physical needs, you and your family have the ability to spend the most precious time with your Mom, a time of reflection, expression of love and tenderness reserved for those that loved her the most.
This cancer has come out of obscurity and our patients have more options then ever before, but unfortunately, not everyone is benefitting from the most recent advances. Your Mom’s experience has a profound effect on not only research but on all visiting this board. She will never be forgotten.
My heart is with you,
Hugs and love,
MarionWhile she was not on AG-120 anymore, my mother has unfortunately now entered hospice. We are glad that AG-120 provided her with at least a couple months without progression, but are sad it did not work for longer. She has not eaten in about 3 weeks and is rapidly becoming weaker and somewhat confused.
She briefly switched to dasatinib a few weeks ago, after stopping AG-120, which I was very hopeful about based on her mutations (IDH-1 and ABL translocation), however I think her disease had progressed too far by that point. I do not want to guess whether dasatinib would have worked if started earlier.
I wish the best to all of those who are personally suffering from, or who have family with, cholangiocarcinoma. I know we are on the cusp of a new era with treatment of CC. I do wish that we were a little further along so that my young mother could have benefited, but I hope at least that her suffering has contributed to the advancement of research for future generations.
deadlift wrote:Wife had her first pet scan after 2 months of ag120. They said there was a reduction in cancer cell activity and “some shrinkage”I am so glad to hear that. I hope that she has continued success with the trial. There are some who have had nearly two years without any progression, limited mostly by the fact that AG-120 did not exist before that.
Wife had her first pet scan after 2 months of ag120. They said there was a reduction in cancer cell activity and “some shrinkage”
Though from reading some of the responses on this thread, I jump every time I hear her cough, as as the start of the trial she had two tiny tumors starting in her lungs.
especially after stumbling on this guys blog/announcement last week while doing my daily work/news site reading http://hintjens.com/blog:123 and perusing some of his posts and then finding out he also had CC
Mvpratt wrote:I also would like to add…. I was unaware that you were a physician so please forgive repetitive information.I also reviewed your entire thread here and had a few thoughts….bostonguy…..
7) Have you joined the FACEBOOK GROUP for patients on the AG-120 . There is a ton of first hand info on that page. I had considered applying to the trial but keeping up with the postings I have since reconsidered. Here is the site https://www.facebook.com/groups/753847751426566/
Warmly,
MichelleCurious what turned you off to the trial? I’m currently waiting to find out how my wife is doing on it. She seems more energetic, but then she’s off chemo. She feels less pain, but from other people that posted here, that may mean main tumor is shrinking but doesn’t necessarily mean others are nor any of the new mets in her lungs from the first PET scan before the trial. Waiting. Waiting. Reading.
Boston guy,
Thanks for letting us know how your Mom is doing. I wish her better success with the dasatinib.
Take care,
CatherineWell, the PET/CT today showed multiple new small tumors in the liver. The existing tumors did not seem to have grown too much. Labs were notable only for an increased alk phos, but otherwise pretty normal.
My mom will be coming off AG-120 today. She is starting dasatinib off-label. The dasatinib trial requires two more biopsies, which she does not want to have given that she already had two for the AG-120 trial, as well as two before that (one for initial diagnosis and another for the genetics panel). Also, the trial requires a four week washout period before starting it, which doesn’t seem like a great idea for her right now.
I’ll switch my updates to the dasatinib thread (even though it is off-trial). Thanks to all for participating in the discussion in this thread. I wish everybody who remains on AG-120 good luck. There are several people at DFCI who are doing remarkably well with it and I have a lot of faith that it is a good choice for many people.
bostonguy wrote:Deadlift, I’m sorry to hear that your wife is not feeling well. I hope that the trial works well for her.AG-120 works by causing tumor cells to differentiate into normal cells rather than by causing apoptosis (cell death). Traditional chemotherapy works by causing fast growing cells to die, which is why sometimes you hear that a fast growing tumor can mean it will respond better to chemotherapy.
I don’t think we know enough about AG-120 to say what types of IDH-1 mutant tumors it will work best on. I truly hope that it works for your wife.
What’s also worrisome is that even in the forums it sounded like it can work on some of the tumors, but not all, and if shrinkage isn’t across the board, you get booted from the trial. Or It sounds like it can work for a period of time and then not.
Deadlift, I’m sorry to hear that your wife is not feeling well. I hope that the trial works well for her.
AG-120 works by causing tumor cells to differentiate into normal cells rather than by causing apoptosis (cell death). Traditional chemotherapy works by causing fast growing cells to die, which is why sometimes you hear that a fast growing tumor can mean it will respond better to chemotherapy.
I don’t think we know enough about AG-120 to say what types of IDH-1 mutant tumors it will work best on. I truly hope that it works for your wife.
I’m so stressed waiting to see what’s going on with wife and this trial. She’s only been on it for a few weeks. First scan to see how she is doing is sept30. Scan to start the test showed something like 11 tumors on liver & lymph nodes and then two(“couple” her words) tiny starting in lungs. Mind you it was April when they first diagnosed and the doctor at sloan was surprised as the growth between MRIs. Not good when the doctor is surprised by the speed.
Maybe that’s good for the trial? Maybe that’s bad over all. Waiting is driving me crazy. Plus she looks generally ok, and has more strength now that she’s off the chemo, but still any wrong food will send her throwing up and lay her out for hours. Wait and see, is not something I’m good at.
maria…..the UCSF clinical trial is closed at the moment and undergoing interim analyses. We should know soon when the second cohort is ready for accrual.
Hugs,
MarionHepatobiliary cancers are prone to blood clots. Armand Trousseau first described this finding in the 1860s; he later found the same sign in himself, was subsequently diagnosed with gastric cancer and died soon thereafter.
Here is some additional information:
https://en.wikipedia.org/wiki/Trousseau_sign_of_malignancyHugs,
Marionmaria …You may want to reach out to the TAPUR study principal investigator:
https://clinicaltrials.gov/ct2/show/NCT02693535Ajjai Alva, MBBS
U-M Comprehensive Cancer Center
ajjai@med.umich.eduMerck (Keytruda) and Bristol Myers Scibb (Opdivio) provide the drugs.
Another option is for the treating physician to request compassionate use/expanded access from either, Merck or BMS.
FDA Ruling:
http://www.fda.gov/NewsEvents/PublicHealthFocus/ExpandedAccessCompassionateUse/default.htmBMS: Expanded Program: https://www.bms.com/clinical_trials/investigator_sponsored_research/Pages/expanded-access-program.aspx
Merck: Expanded Program: http://www.merck.com/about/statement_on_expanded_access.html
Hope this helped.
Hugs,
Marion
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