Search Results for 'AG-120'

Discussion Board Forums Search Search Results for 'AG-120'

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  • bglass
    Moderator

    Hi Alcyon,

    It is a pleasure to meet you, although we have heard a lot about you through Hannaha’s postings.  Hannaha is an amazing and wonderful voice on this board.

    I looked around a bit but did not find much information for you.  Here is the final article from the trial for Ivosidenib (AG-120). https://pubmed.ncbi.nlm.nih.gov/34554208/  You can look at the tables and graphs on this report to see some characteristics of survivors although I don’t think it is specific to the “long tail” as you describe it. The information is not written for laypersons, but it looks to me as if individuals in better initial health did better than those less so.  It also looks as if the researchers looked to see if the individuals in the trial had other mutations, but that there was no strong finding about the impact of the presence of other mutations.  At any rate, that it what I think I saw in there.

    Also, we had a few folks who participated in the AG-120 trials who posted on the board at the time.  I looked through their posts but did not find anyone reporting a long survival.  This is not to say none were in this group, it is just that no one with that profile posted about it.

    I wish I could be of more help with your question.  It is really inspiring how well you are doing with your treatment – my fingers are tightly crossed that your good results are here to stay.

    Regards, Mary

    gavin
    Moderator

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    https://clinicaltrials.gov/ct2/show/NCT02989857

    Gavin

    gavin
    Moderator

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    https://clinicaltrials.gov/ct2/show/NCT02989857

    Gavin

    gavin
    Moderator

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    https://clinicaltrials.gov/ct2/show/NCT02989857

    Gavin

    gavin
    Moderator

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    https://clinicaltrials.gov/ct2/show/NCT02989857

    Gavin

    gavin
    Moderator

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    ClarIDHy: A Phase 3, multicenter, randomized, double-blind of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.

    https://clinicaltrials.gov/ct2/show/NCT02989857

    Gavin

    #97844
    bglass
    Moderator

    Hi Daisy,

    It is great to hear that your mother had such a good and long run with the AG-120 trial.  I hope her next treatment proves just as effective or better.

    I looked through the board information, and there seems no pattern to next treatment after AG-120.  I found one person treated with dasatinib, and another with Keytruda, and another with a standard chemo combo.  Of these, only Keytruda is an immunotherapy.

    Have you looked through clinical trial options?  What are your mother’s doctors recommending?

    Regards, Mary

    #97504
    gavin
    Moderator

    Hi Mary,

    Glad to be of help as always! Thanks to you for the extra info as well re the AG-120 and some of our members taking part in that trial. I did a search for AG-120 on the boards so that that info is in this post and this is what came up –

    https://cholangiocarcinoma.org/db/search/AG-120/

    Thanks as always Mary!

    Gavin

    #97497
    bglass
    Moderator

    Thank you, Gavin, for posting this.

    Ivosidenib is the newer name for the drug formerly known as AG-120.  Some of our folks participated in trials for this drug, which targets the IDH1 mutation.  If you use the discussion board search engine for “AG-120” you can read their posts.

    bglass
    Moderator

    Hi Michael,

    Thank you so much for posting your sister Lisa’s story.  She is so lucky to have a doctor-brother in the family tremendously supporting her as she pursues treatment.  I was sorry to learn Lisa is having a tough time recently, and hope as you do that the AG-120 will stop the progression of her cancer.

    There are a few patients active on this board on the same trial who I hope will see your posting.  Also, if you haven’t discovered them yet, there are active Facebook cholangiocarcinoma groups out there for patients and caregivers, if you are a Facebook user.

    It was interesting – and concerning – to learn that the conditions of the trial do not allow a patient to have radiation treatment, even if it might otherwise be recommended.  That is not an easy situation to face.

    Please keep us posted on how Lisa is doing.

    Regards, Mary

     

    MichaelSu
    Spectator

    Hi My name is Michael, I am living in Springfield PA. My sister is Lisa, she came from CHINA, she  was found to have Cholangiocarcinoma back in 2013 by routine ultrasound of abdomen ( I know that in US there is no such routine check up allowed by insurance company). She had surgery done in UPMC (cash paid due to no medical insurance in the US, international patient), followed by preventive chemotherapy. She was living well for over 2 years until a year ago, Lung CT found small masses. She had 6 months chemotherapy at Fox chase cancer center in Philadelphia, no obvious improvement. Gene analysis showed that she is a candidate for AG-120.

    Unfortunately, she was chosen in the control group, 5 months later her lung mass block her retropharygeal nerve cause coarseness, also retroperitoneal lymph node was enlarged, she was started on real drug AG-120 in Jan 2018. One cycle later, good news was, lung mass was shrinking slightly, bad news was there was spinal cord involvement, needs immediate radiation therapy (10 days) (self pay), she responded well, and allowed to continue AG-120, currently will start 4th cycle next week. She is anemic, her hemoglobin in less than 10 (9- 10), liver, kidney cardiac functions are normal, no breathing problems, her voice hoarseness is better lately.

    Her side effect include, nausea, episodes of swollen feet, abdomen ascites recently, responding well to diuretics ( I am a medical doctor, I gave her Lasix and Spironolactone).

    My sister had irritable bowel symptoms, easily diarrhea after each meal, air bloating, noisy abdomen sounds. She had to use pain pills for back pain, might be related to stretches of enlarged lymph node. Pharmaceutical company do not allowed any interventions unless they are life threatening conditions. The enlarged lymph node could be easily shrink by radiation therapy or high intensity ultrasound therapy, which is popular in CHINA already.

    I would be interested to make friends with other patients, my e mail is xuehuisu@gmail.com. God bless everyone!

    susanbraden
    Spectator

    HI!  I started the IDH1 mutation AG-120 trial phase 3 randomized (2:1), double-blind placebo trial on June 14th, at Memorial Sloan Kettering in NYC.  Dr. Nancy Kemeny is my Onc.  The hardest thing about this trial in this phase is “not knowing” if you’re on the ag120 or placebo.  If subsequent scans show growth instead of “stable”, then the trial will be unmasked at that point, and if the patient is on placebo, they will be started on the AG120 from that date.  Each ‘cycle’ is 28 days. I am currently on Cycle 5 day 17. Scans are scheduled every 6 weeks, and all scans to this point have shown ‘stable’ or even some minimal shrinkage of some tumors.  SO, we’re pretty sure I’m on the real drug, now.  Side effects are so minimal, I don’t think I have any- especially compared to the 2 1/2 years of constant chemo I’ve had in the HAI pump and systemically.  There are no steroids given with this, so I’m stiff and moving like a 90-year-old most mornings until I ‘get going”. I haven’t had to take any anti-nausea pills or other meds with this.  2 pills in the morning each day and I’m on my way.  I know of a few more CC patients enrolled in this trial, now, and some waiting to start.  The fact that this is targeting a specific genetic mutation and is working right now for me is very exciting – not just for me, but for the future of other ICC patients, as well.

    #94561
    bglass
    Moderator

    Dear ChezWright,

    I was also sorry to hear your CCA made a reappearance after such a long absence. Thankfully, you and your doctors were still watchful and saw the movement in CA 19-9. Some of our doctors seem to believe a CCA patient can be cut loose after a certain milestone is reached, but this cancer demands that patients stay alert.

    The study Katrina is participating in does sound promising (and a big thank you to Katrina for posting on this). I looked at clinicaltrials.gov to see what is available in Maryland, and some of the trials other patients have reported about on this board have sites here (I am also in Maryland). Apparently INCB054828, AG-120 and pembrolizumab studies are recruiting in Maryland, possibly at Hopkins. If you are concerned about travel, you might look up on the clinicaltrials.gov website which trials are closer by, then ask Dr. Javle about them when you speak with him. If you search a treatment name on this board, you may find postings re other patients’ experiences with them.

    I had the same question as Melinda – have your doctors discussed genomic testing with you? CCA treatment has changed a lot since you were first diagnosed. The testing may be able to identify genomic defects for which there are targeted treatments available.

    Please stay in touch as you navigate treatment options, and best wishes that this goes smoothly with good results.

    Regards, Mary

    #95075
    marions
    Moderator

    Daisy….so nice to hear from you.

    We encourage patients and caregivers participating in clinical trials to communicate via the threads specifically provided for this purpose.
    http://www.cholangiocarcinoma.org/punbb/viewforum.php?id=14

    As the Phase III AG-120 only recently has started the recruitment process, it’s likely you are the first to begin the new thread.
    The study is highlighted on our website: http://cholangiocarcinoma.org/claridhy-a-phase-3-multicenter-randomized-people-are-allocated-by-chance-to-receive-one-of-clinical-interventions-double-blind-neither-the-participant-nor-the-investigator-know-who-is-receiving/
    This is the study ID: NCT02989857
    Patients with advanced cholangiocarcinoma and an IDH1 gene mutation. This mutation is likely to occur in 20 – 40 percent of “intrahepatic” cholangiocarcinoma patients

    Daisy, we will watch for your entry in the above mentioned thread, Gavin will highight it with what we call a “sticky.

    We don’t yet have conclusive data regarding the efficacy of Keytruda, but the trials are ongoing and from what I have seen some have excellent results whereas others do not quite as well. Hoping for our experts (those with personal experience or those sharing on behalf of their loved one’s) to chime in and help us out.

    Best of luck to your Mom and please keep us posted.

    Hugs
    Marion

    #95074
    lcr1965
    Spectator

    Daisy,

    My wife is meeting with a doctor tomorrow to see whether she can get into the phase 3 study of ag-120. We expect her to qualify, so I’m happy to compare notes.

    I also was wondering about Keytruda and similar drugs. Do you need a specific marker from the genomic testing to qualify. I’m wondering why not everyone tries it?

    I’ll post again after we meet with the doctor. She’s being moved to this trial because the first line and second line chemo regimens did not stop the progression of the disease.

    Lou

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