Search Results for 'AG-120'

Hopeful,

My wife is in a similar position as your husband. The Cisplatin/Gemzar first line treatment did not work and her tumors grew while she was on the treatment. The doctor has started her on the FOLFOX, which is the oxaliplatin and 5FU regimen with the 46-hour pump that you take home. She had her first treatment of the FOLFOX a couple days ago and was unhooked from the pump today.

She had her tumor tested and was found to have the IDH1 mutation, so she qualifies for a trial of a new drug, AG-120, which is being tested on people who have failed to maintain a response on the Cis/Gem chemo. She wasn’t required to get the second chemo regimen before the clinical trial, but was told that she could not start a third chemo regimen before starting the trial. She’s going to try the FOLFOX and if/when that stops working she will enroll in the clinical trial.

Do you know what clinical trial your doctor is recommending to your husband? I’d like to see if it is something different than what they are recommending to my wife. The trial of AG-120 that I mentioned above is titled “Study of AG-120 in Previously Treated Advanced Cholangiocarcinoma With IDH1 Mutations (ClarIDHy) (ClarIDHy)” and the number is NCT02989857.

Good luck. Sending positive thoughts your way.

While 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.

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.

Curious 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.

Well, 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.

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.

Marion,

I”m looking at trying to get my mother prescribed Keytruda off-label, as it seems that the pulmonary embolisms disqualify her from every trial I’ve looked at her going on next

For anyone who is interested, it looks like UCSF has a keytruda trial specifically for cholangiocarcinoma patients that’s enrolling now:

https://clinicaltrials.gov/ct2/show/NCT02703714

Bostonguy,

I do know that the pleural effusions did increase as a result of AG-120, just because her breathing improved very soon after her going off the trial. As for the pulmonary embolisms, though, you’re right, might just be a side effect of the cancer. Thanks for the info, wish the best for your mom.

Maria, thanks for sharing your experiences. I wish the best for your mother. I think it seems reasonable to believe that the pleural effusions (fluid around the lung) and fatigue could be related to the drug.

However, it is also possible that the fatigue and pleural effusions were related to the cancer or the pulmonary embolisms. While there are some drugs that cause hypercoagulability (increased clotting), the greatest risk factor here is almost certainly just having cancer in the first place. All patients with cancer are at a higher risk of blood clots.

The increased size of the pulmonary arteries may have been due to the pulmonary embolisms, as these will cause increased back pressure leading to pulmonary arterial hypertension.

As a result, it seems likely that most of these findings are due to the cancer and not AG-120. I don’t say this to contradict you, but just to make sure you don’t think that doing the AG-120 somehow hurt your mother in a way you could have prevented or that it was a bad choice.

I’m sorry to hear that the drug did not work for very long in your mother. My own mother is still on the drug, but seems to be declining the past couple weeks. The first scan was good, but I am worried about the next one. We have the next scan on 9/6, at which point I anticipate we will be switching to another agent.

In our case, I think dasatinib will be next, since it has been shown to be effective in IDH-1 cholangio, and my mother also has a secondary ABL1 mutation, which happens to also be a primary target of dasatinib (though generally the ABL1 mutation is found in chronic myelogenous leukemia, not solid tumors).

My mother was enrolled in AG-120 at UT Southwestern so i thought i’d share her experience in case it’s helpful to anyone.

She was only on the drug for two months, during which time her primary side effects were increased fluid build-up around her lungs, and fatigue. Other than that she tolerated the drug fairly well. However at her 2 month scan we found that while it seemed to keep some of the tumors in her liver stable, a lymph node in her chest grew. In addition, she had two pulmonary embolisms in her lungs and evidence of mild arterial enlargement of her heart. The trial coordinators are denying that the pulmonary embolisms and the arterial enlargement were caused by the study (although she’s never had anything like that before, I supposed it could be a coincidence?). Because of the embolisms and the growth in the lymph node she was taken off the study.

Now, the biopsy that was used to test for her eligibility for the study was over two years old, so it’s possible her tumors have mutated in that time and that’s part of the reason we didn’t have great results on the study. Good luck to everyone else participating!