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October 11, 2016 at 1:45 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90169
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 CCSeptember 21, 2016 at 7:29 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90177Mvpratt 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/
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.
Called MVP last week. Yup it’s in appeals.
Called up this week. No appeals no new no nothing. Least guy I got yesterday was hot to fight it. Thinks the doctors office are, not doing thing ethically. Fun!
Though he is leaving MVP Friday so, we’ll see how far he gets by Thursday.
just saw the response. Seriously. I have 10 lbs of whey on top of the fridge and probably 30 lbs from a sale in our long term food storage. After my wife’s diagnosis i switched jobs for way better health insurance and a pay bump so i bought a rogue rack and bar for the basement. when the wife is resting I can still be in the house and get the lifts in. i’m working with. squat and deadlifts keep me sane through all of this. best part is when the kiddo comes downstairs and i have him count reps. nice to have a cheer leader.
good luck with your mom!marions wrote:Congratulations, dear deadlift, your persistence paid off.
A little tidbit: Prior to 2006 cholangiocarcinoma patients had to fight for benefits. This prompted a Texas attorney to challenge the Social Security Administration and with the help of the Cholangiocarcinoma Foundation the rulings changed resulting in the automatic granting of Social Security benefits for our patient population.
Well good work for the foundation. I actually noticed benefits and check date on the web site before they sent confirmation which i found odd. I
And she’s approved. First check Oct 12.
That sounds rough. I for sure am super thankful that I switched jobs and insurance right after my wife’s diagnosis and the new insurance just pays, and doesn’t require any pre-authorizations. All my issues were with the old insurance. I”m not quite ready to write off the 2k$ but it would be nice to apply that to the other outstanding bills from the old insurance.
I think she didn’t want to acknowledge the cancer nor the ability to get disability. she doesn’t think it’s even worth the money i think, given the short conversations we’ve had on it. I saw where someone had a response in 2 weeks. always something to wait for i guess
Pain sucks. Sorry to hear that.
Yah new insurance doesn’t require pre-auth. They pay everything so far.
I’m not even sure my old insurance was the problem, it sounds to me like the doctors office was incompetent. I was fully prepared to eat the cost, but they assured me they would appeal and get money back. They even had an approval after the fact. I hate being lied to .
Another time they wrote a script for a cat scan for another reason, on the new insurance. I kept bugging them for the authorization. “Oh we are getting paper work, oh we are waiting on the doctor”
Come to find out we didn’t need pre-auth. Clear case of deceit. If they called the insurance to see what they needed for pre-approval like they told me they did, then they would have known approval wasn’t needed. But even that took 2 days. least i know now.
I did a lot of guided meditations when my wife was first diagnosed. For her meditation doesn’t work so well, as she can’t take deep breaths without feeling the tumors on her ribs. So, not exactly relaxing.
search for the honest guys on youtube. Lots of good stuff there.
The wife is going out to some waterfall/nature parks today with a friend. That usually uplifts her spirits some. She was griping about that yesterday and how she can’t hike cause she’s out of energy and her friend always wants to go too far. I told her to just tell him what her needs are. It’s better to get what you want then to still look out for other people and just not go cause it will be inconvenient.
This comes up a lot on other forums I frequent. There were a lot of issues with the studies. Granted i am biased as someone targeting 250g protein every day, and well. Lets just say that avoiding meat and dairy that would be troublesome
also, fi that’s the same study i think it is:
There were only 113 determinable deaths in the total cohort of 6,381. That is < 2%, and hardly something significant. In the low protein cohort 10 people died of cancer. In the high protein diet 17 people died of cancer. This is around .1% and .17%. That is an "Absolute Risk Reduction" of .07% increase in cancer mortality, not the 70% suggested by the authors. And the study claimed "weight loss was controlled for" indicated the average participant had an "average 38 inch waistline and a BMI of 28 WHILE eating 1600-2000 calories a day.September 5, 2016 at 1:03 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90248bostonguy 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.September 4, 2016 at 9:47 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90246
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.Iowagirl wrote:deadlift,
I actually made an appointment with a SS representative locally and spoke with him in person. It was far simpler. All I had to do is give him the name of my doctors and their contact info, my cancer diagnosis as well as any other major illnesses I think, and then he had a lot of basic question answer stuff. I signed something giving them permission to talk with my doctors, so I didn’t have to personally arrange for anything.
I can’t imagine that they need ALL medical records….but that’s where it was really handier to do this in person than on the website. There is probably some phone number you can call, or a place on the website with an email contact to ask this kind of question, but I can see it dragging out. Mine was started late May and approved in July, but I personally didn’t have to do anything after meeting with the guy in the office in May.
I guess Since you started on the web, you might try calling or emailing SS to ask just what they mean exactly by medical records….just what specifically they want. I am pretty sure they’d want anything having to do with The CC…..when symptoms showed up…..because they do use that as part of the waiting time before getting payments started. The guy I spoke to wanted to know ANYthing that looked like it might be symptoms….but as you know, there aren’t usually any untill things get really serious and you get diagnosed, so in our cancer/disease, that isn’t super helpful, but in my case, I didn’t apply for disability until 3 months after surgery (and thus 4 months after the tumor was found .
Thanks! I think we have it sorted out. The biggest hurdle really was it didn’t seem like my wife had much interest in pursuing it, or the paper work. I filled everything online first, with all the information I had, doctors, treatments etc etc. First diagnosis was after easter so that ought to cover the waiting time I think. We used the medical records from her hospital discharge that had everything on it.
I agree that going in person would have been more insightful but my wife wanted nothing to do with appointments or waiting in line etc. I’ve got all the papers mailed out as of last week so we will see. It should be pretty straight forward at this point. Though they said it can take 60 days to process to a decision.
1/3 of placebo AND chemo? So not purely placebo. They don’t typically do placebos for cancer. Besides, if you are testing new chemo, it’s pretty obvious if you get side affects, yup, chemo, if no side affects. nope, placebo.