Search Results for 'AG-120'
-
Search Results
-
Hello Steven
Thank you very much for responding.
I am due for new imaging studies in the next two weeks to see if I derive any benefit from Ag-120. My side effects have been relatively mild, mainly diarrhea, pretty well controlled with imodium.
I am aware, of course, that even under the best circumstances targeted therapies, such as Ag-120 for IGH1 mutations are unlikely to be curative. They can keep the disease stable for a while until – hopefully- some suitable immunotherapy exits the pipeline. Right now Keytruda sounds exiting but it seems only to work well in patients who are also positive for mismatch repair deficiency, if I am not mistaken.Anyway, I’ll keep you posted and hope to hear from more people on this particular trial.
All the best for your mother.
Paul
Good morning,
I have not written for a the longest time, more than 3 years to be exact, even though I have followed the board on a regular basis. After extensive surgery, SBRT to a portocaval node, a
short course of chemo followed by re-exploration and abdominal hernia repair one year ago,
I now experienced a more aggressive recurrence of the malignancy as I am running out of treatment options. Genetic profiling had revealed genomic alterations that included IDH1.
Therefore I applied and was just recently accepted into the Agios Ag-120 trial. I do not have follow-up results yet but would be interested to establish contact with other patients who are on that trial.
Thank you for being there,
Anatta23After the initial set of scans yesterday, 8 weeks into the AG-120 trial, the doctors were largely encouraged. The sobering news is that we were told there is a tumor in the lungs that has grown by 8% but we were told that all other tumors are stable and some in the liver have even shrunk. Dr. Harding at MSK has strongly encouraged her to stay on the trial based on these results, which they are considering to be “stable disease” at this point. There is some good news here but the pessimistic view is that I’m not sure we have any other option. I hate that there is growth of a tumor and she has been coughing but the rest of the news seems very good (other than swollen belly which may be accedes plus swollen liver plus other side effects and her continued recovery from the compression fracture, which seems to be largely healed; and she may also have a slight rib fracture or two that the doctors did not find significant enough to even discuss until questioned about it) and she feels good and all other blood tests are showing good signs. We are still awaiting PET Scan results and she is going for another biopsy on Friday, which is part of the trial protocol. I suppose the only logical alternative at this point may be Keytruda but none of the doctors are advocating that at this point. I wanted to report the news in case this might help anyone and, of course, if anyone has any suggestions or advice, please do not hesitate to share.
Thanks and best to all!
Sincerely,
StevenIn reply to: Looking for anyone who has IDH1 mutation
After the initial set of scans yesterday, 8 weeks into the AG-120 trial, the doctors were largely encouraged. The sobering news is that we were told there is a tumor in the lungs that has grown by 8% but we were told that all other tumors are stable and some in the liver have even shrunk. Dr. Harding at MSK has strongly encouraged her to stay on the trial based on these results, which they are considering to be “stable disease” at this point. There is some good news here but the pessimistic take is that I’m not sure we have any other option. I hate that there is growth of a tumor and she has been coughing but the rest of the news seems very good (other than swollen belly which may be accedes plus swollen liver plus other side effects and her continued recovery from the compression fracture, which seems to be largely healed; and she may also have a slight rib fracture or two that the doctors did not find significant enough to even discuss until questioned about it) and she feels good and all other blood tests are showing good signs. We are still awaiting PET Scan results and she is going for another biopsy on Friday, which is part of the trial protocol. I suppose the only logical alternative at this point may be Keytruda but none of the doctors are advocating that at this point. I wanted to report the news in case this might help anyone and, of course, if anyone has any suggestions or advice, please do not hesitate to share.
Thanks and best to all!
Sincerely,
StevenIn reply to: Looking for anyone who has IDH1 mutation
Hi Daisy, my mother has the idh1 mutation as well. I have written a few other posts on here about her and her current involvement in a trial at Sloan Kettering for AG-120 (Agios 120). This week is her 8th week on the trial, which is the first time they do all the checkpoint scans so we hope to know more at the end of this week as to how she’s doing on the trial. I will report back as soon as I have any solid information on her status. All the best!
Hello All, my mother Kathleen, about whom I have posted a number of times previously, has been participating in this trial for Agios 120 (AG-120) at MSK in NYC since the beginning of December. She had been on FOLFOX chemo since August 2015 after we discovered in July that the CC had returned (stage 4). She was reaching the end of her tolerance of FOLFOX, which was beating her up but also seeming stabilizing the cancer, although she suffered a spinal compression fracture from the metastasis near the spine that the doctors think had spread there before she started FOLFOX. Side effects have been minimal although she has significant swelling in her bellly along with a protruding mass which the doctors indicated to be a side effect of the AG-120. She will be scanned two weeks from tomorrow (Weds). I will keep everyone posted with any noteworthy results.
Very best to all,
StevenAgios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial in Advanced Solid Tumors at AACR-NCI-EORTC Investor Lunch and Webcast on Sunday, November 8, 2015.
This might bear watching. The drug AG-120 targets the IDH-1 mutation that is fairly common in Intrahepatic CC. I am pretty sure they included some CC patients in the trial, so maybe some data to come out in a week or two on whether it helps ICC patients.
Here is the link to the press release:
http://investor.agios.com/phoenix.zhtml?c=251862&p=irol-newsArticle&ID=2102387
Agios stock was up 25% today, so perhaps the data were good news?
I hope so,
Jason
In reply to: Not one of my better days
Duke,
Real sorry to hear this latest news from you. Not what you or anyone wanted to hear. So hoping that you get onto the AG-120 trial and am keeping everything possible crossed for you with this one. You know you’ve got all of us here wishing you every success with this and loads of positive thoughts are heading over the pond to you.
Thinking of you,
Gavin
Topic: Not one of my better days
CT scan last Friday showed that irinotecan was no longer working. No evidence it ever did. Irinotecan before that showed little effect – maintaining stable is the best that might be said of it.
Trying to get into AG-120 trial (NCT02073994). If that falls through, docetaxel appears to be the last apple in the basket. Main problem with trials is that my platelets have steadied about at about 83,000. Most require above 100,000.
Duke
In reply to: Are we out of options?
Sandy –
Getting into the discussion about AG-120 a little. Irinotecan is not working so onc is looking into AG-120.I like the idea of pills instead of infusion, but 24 pills a day for 28 days is beyond belief.
Any insight you can give me will be gratefully accepted. Info from anyone on AG-120 will be welcome.
thanks
Duke
In reply to: Bummed
Duke-
Have they identified your specific mutation? Appears that is what dictates which trials you are eligible for.
In no particular order, but for what it is worth:
Dave was on the Agios AG-120 which is already in advanced phase – specifically for the IDH1 mutation.
Merck has Keytruda in Trial – targeted at other mutations.
We are going into CB-839 – pretesting being finalized tomorrow – that is not specifically for Liver tumors but solid tumors that also have the IDH1 markers.
There is a major study underway at NIH that may merit your looking into.
Good luck!!!!Topic: Are we out of options?
Hi All- I haven’t posted in a long while – but I read everything on this site every day – sometimes it makes me scared, sometimes angry – but lots of times it does give me hope – and it always fills me with wonder at the compassion, caring and love you all share.
My husband Dave was first diagnosed with CC in May of 2013 and what a “long, strange trip it’s been”.
After multiple opinions, we settled in on MSKCC (Memorial Sloan Kettering).
From when we first found the tumor in his liver, to when surgery was scheduled, the tumor grew from 9 1/2 cms to 14 cms.
Dr Fong operated but determined that a resection was not possible, due to several satellite tumors – he determined there was not sufficient good liver to regenerate. He burnt off as many of the satellites as he could. At the same time, he also implanted an intra-hepatic pump which would be used to administer Chemo (FUDR) directly to the liver.
We then met with the Oncologist, (July 2013), Dr. Kemeny who would be administering the FUDR into the pump while also administering systemic chemo, Gem/Oxy every two weeks. Dave tolerated the Chemo treatments very well and experienced minimal side effects.
They always told us a time might come where the Chemo would stop working.
After losing 35 pounds over the first few months, and barely getting out of bed due to being so tired and short of breath, all of a sudden it was like a switch had been flipped and Dave came back to life, for the most part pain free and energetic. And the weight came back along with his appetite.
Dave remained on the regimen until December 2013 when they found that the cancer had spread to his left lung (very minute) and ribs – the pain was excruciating as it had penetrated the bones –
He had surgery Christmas Eve (also the eve of his birthday) – they removed ribs 5,6 and 7 and put in mesh to protect the now exposed chest cavity. They also cut some of the lung to insure there was no spread from the bones. The recovery was very painful but the relief of getting rid of the ribs provided enormous – going forward they added Exgeva to the regular treatments to protect the bones.
2014 started off so much better – After all the pain, exhaustion, shortness of breath, Dave really enjoyed a quality of life
After about 9 months of the Gem/Oxy cocktail, neuropathy began to set in so the Oxy was replaced by Teecan (Irinotecan).In November 2014 after 17 straight months of Chemo every other week, our Onc, , Dr. Kemeny determined based on a CT Scan that the Chemo was no longer working – the spread to the Abdomen had become extensive, and the 2 newest Liver lesions had doubled in size. The original liver tumor which had been reduced dramatically in size and then dormant, had begun to increase in size again.
The tumors in each lung remained unchanged and very small.
At this point we began to review the results from the Gene testing done earlier in the year to explore the availability of Clinical Trials.
Our Onc determined that the Agios AG-120 trial was a strong option, as it was targeted at IDH1 mutations, the exact one that the testing had identified. IDH1 mutations appear to be present in about 35% of CC patients, and particularly present in Patients with longer survival rates,
Unfortunately we had to wait a minimum of 3 weeks from treatment to even be considered for any Clinical Trials so Dr Kemeny suggested we cease treatments immediately in order to be ready should a spot become available. Unfortunately MSKCC did not get the spot they anticipated getting in December, but January 2015 we were informed a spot had become available and it was Dave’s!!!
We couldn’t have been more excited as this Trial seemed so promising for Dave’s particular mutation.
We started on February 1st. As per the trial guidelines, we reviewed CT scans and bloods on the 56th day – unfortunately the liver tumors had continued to grow and Dave was feeling considerably weaker, and very short of breath. So the decision was made to take him off the trial.
We revisited the possibility of putting Dave back on chemo, but the Onc was concerned that might preclude Dave from being considered or eligible for any other trials.
Today we met with another Doctor and his team who was also running a trial : a Glutaminase Inhibitor CB-839 targeted at Patients with advanced Solid Tumors.
We are awaiting confirmation Dave is eligible based on recent PET scans, biopsies and bloods.
If accepted, we begin next week.
What else should we be considering?
