IDH1Study. AG-120 in Previously Treated Advanced Cholangiocarcinoma
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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
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!
My husband has IDH2, apparently there are no clinical trials for it? I believe 221 is for IDH2 but I guess nothing happening there yet as for cinical trials.
I wish you the best… I pray you see continued benefit.
Kind regards,
Patti
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.
I would love to get some feedback from anybody enrolled in this trial. Please post on this thread your experiences, side effects and results so we can share with other patients and caregivers. Thanks so much!
Melinda
Study of AG-120 in Previously Treated Advanced Cholangiocarcinoma With IDH1 Mutations (ClarIDHy) (ClarIDHy)
It has opened for enrollment:
Fox Chase Cancer Center, Philadelphia, PA, United States
MD Anderson Cancer Center, Houston, TX, United States
Memorial Sloan Kettering Cancer Center, New York, NY, United States
Sarah Cannon Cancer Center, Nashville, TN, United StatesTo find a study near you or to learn more, please contact Agios Medical Affairs at 844-633-2332 ormedinfo@agios.com. Additional information about the ClarIDHy trial is also available at http://www.ClarIDHy.com.
ClarIDHy is 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 AG-120 or the placebo) of orally administered AG-120 for patients with advanced cholangiocarcinoma and an IDH1 gene mutation.
The purpose of the the ClarIDHy clinical trial is to test how safe and effective AG-120 is in patients with an IDH1gene mutation in advanced cholangiocarcinoma.
To be eligible for the ClarIDHy clinical trial, patients must meet certain criteria, including: Be at least 18 years old, have advanced cholangiocarcinoma that cannot be removed by surgery, have an IDH1 gene mutation (testing to find out if the patient has an IDH1 gene mutation will be provided by the clinical trial), have been treated with cancer medicine, but the disease has grown or spread. Please refer to http://www.ClinicalTrials.gov, identifier NCT02989857, for a complete list of Inclusion Criteria.
https://clinicaltrials.gov/ct2/show/NCT02989857
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