Forum Replies Created
June 28, 2017 at 10:04 pm in reply to: Efficacy and safety of FOLFIRINOX in advanced cholangiocarcinoma. #94995
Do you have a tl;dr?
Wife is going to be on this i believe.
Given she can’t even walk up steps without help it seems like she doesn’t meet the health requirements. But I’m not a doctor
Off keytruda. Stable liver and lymph hit cancer spread to abdomen
On to folfuri
Thanks for the kindness.
I agree on the palliative care. Wife sees that as dying and doesn’t want anything to do with it. Meantime we wait until the next scan Monday with whenever the results are, and potentially more treatment Wednesday(best case).
She’s made it downstairs more than once in the last 24 hours so maybe that’s progress.
Well. She did feel a bit better after the drain. Only got 1000cc so not a ton. Had her on diuretics for awhile. Then gave her iv fluids last trip to the city, and moved up her next scan. This week she had ob/gyn and they checked her, way dehydrated, gave her 3 bags of fluids. Then she felt pressure again figured needed a drain. I took yesterday off to get her to the city as they were not sure any place local would give her a drain without her records. Bad logistics on our part. Course, sloan in the city said, no fluid, get on your pain killers and go home. Huge waste of time when she’s weak and tired and sitting up is uncomfortable Least they gave her some oxy after I asked. Like you know it’s a 2 hour drive, plus rush hour, plus she’s here cause she’s in pain and uncomfortable. Give her some drugs for the ride.
she’s now on the 12 hour oxy tabs. she has a script for the fentonal patch though she doesn’t want that cause then she can’t take baths or go in the pool.
Really a shit time. She fully expects the next scan to kick her off keytruda. I think next would be folfuri chemo, but I’m wondering if she’s miserable and on chemo if that’s a good choice. Wait and see what the doctors say i suppose. no need to suffer twice and think about it until we have to think about it.
finally got my check.
I thought i was pretty common to always start with gem/cis if it’s inoperable before moving on to trials. I know with the ag120 you had to fail primary treatment first. May as well get that out of the way.
As to some being operable and others not. We’ve all been to high school. There are A students and D students. You never know what kind of surgeon you get. I’ve see seen that with my buddies wife and her surgical issues. She had her case presented to a team of doctors and nobody could touch it, then one doctors all “yah i can make that happen”
All depends on how good they are sometimes.
As to the oil and the cost. I’ve heard that it’s spendy. And insurance doesn’t cover it well etc. Though the oil can be more sleepy. My wife just smokes it old school from a bong. so depending on what she has sometimes it makes it harder for her to sleep cause it energizes her. Course she smoked off and on before cancer. The stuff I get for her is dirt cheap. Probably under 400$ for an oz, and lasts her a long time. Trick is to get the kind that keeps her low key. She’s said sour diesel makes her too energetic. She’s had good luck with purple haze and girl scout cookies.
Didn’t see another keytruda thread
Wife has had 3 treatments. After the first two they didna cat scan and saw mixed results. So two more treatments and see.
She’s much weaker and having lots of issue with eating and being tired. She’s also bloated from fluids so they are giving her diuretics for a week and possible a drain this week. Hoping a drain helps her feel a little better.
I’ve read keytruda has 50% response rate. Doctor told wife 20 %success rate. Wait and see.March 26, 2017 at 11:41 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90259
I realize I wasn’t super clear. So trial was over a few months ago, so they kept her on ag120 since she was responded. Back in January she went from shrinkage to stable , last week she went from stable to growth. She is now visiting friends in Colorado and will start keytruda once they schedule all of that. All these treatments all seem to be , could shrink then not. Could go remission , or could do nothing.
Thanks for the kindness hereMarch 22, 2017 at 1:45 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90257
Wife out of trial. On to keytruda sounds like.February 19, 2017 at 9:23 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90255
Seems like that was 2 weeks of constipation pain She changed meds to mirilax and changed her diet and seems back to pre pain levels or energy. Or a little less
Wife had abdominal pain for quite awhile. She’s always had gi issues but attributed to holiday over eating. She started to diet down to fix her gi issues but it didn’t help. Finally babhnsitter mentioned it sounded like gal bladder issues. So she went into have that checked. The. Had biopsy scheduled and days before got jaundiced. Been a roller coaster since.January 29, 2017 at 10:48 pm in reply to: Social Security has an obligation to provide benefits quickly #79428
This thread made me get benefits for my wife and then we got benefits for my son since she was on disability. So much help here thanks !
Allegedly they are cutting me a check last week. Mind you insurance paid them in December Literally the worst doctors office I’ve used. You can never get them on the phone and dorna week their voice mail was full.
Thankfully since wife is on ag120 and not chemo we haven’t been there.
I still owe them 600$
Probably wait for that to work through collections for a year. Cause screw them.January 29, 2017 at 8:37 pm in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90253
Thanks marions. Thag helps and makes stable sound more positive. Though this last week wife has new abdominal pain. She went back on oxy and that doesn’t seem to help. Waiting to hear back from her doctor when the work week starts. Went to er last night to make sure it want anything else and they couldn’t find anything and sent her home.
The only positive spin was her cousin was just in the hospital with severe abdominal pain and heh called it a virus and sent him home. Hopefully that’s it cause we saw him a few days after he felt better.January 23, 2017 at 12:12 am in reply to: Agios to Present Clinical Data from Ongoing AG-120 Phase 1 Trial #90251
Well wife had her first scan in oct , shrinkage , scan in nov also had shrinkage. She didn’t tell me about The scan in dec . She wasn’t feeling as good last week which I attributed to not eating properly. Well latest scan has shrinkage and growth but over all stable whatever that means. She does get to stay on the trial which I think is good overall but seems like back to the roller coaster. I guess sometimes this works sometimes it doesn’t and sometimes it stops working ?