January 10, 2017 at 2:39 am #91472
googily……Don’t hesitate from reaching out to Melinda, she is here to help. Regarding Keytruda pembrolizimab) (Merck) and Opdivo (nevolumab)( Bristol-Mayer’s Scibbs) can be pescribed off-label, but difficult to receive insurance approval.
What about the NCI Match trial? Could that be an option, or the ASCO TAPUR study?
MarionJanuary 9, 2017 at 8:28 pm #91471
Thanks, Marion, and Lainy, and Kris.
It sounds like the Georgetown Keytruda/interferon trial is probably 2-3 months away from enrolling, so I think we may go with second-line chemo in the interim, given how good he is still feeling overall. (except for the neck pain, so there might also be some radiation first)
But we do also want to see what’s available at NIH, though we are a bit mystified about exactly how to go about that, whether we just find a trial we are interested in or try to get seen there and have them triage him toward what they feel are the appropriate trials. Maybe I need to send up the bat signal for Melinda B. (Also need to tell her how much time I’ve spent in Billings over the years, despite being from DC!)
I don’t want to muck up this trial thread further, so I’ll head back to my original thread:January 8, 2017 at 4:05 am #91470
gooigily…this was brought to my attention only a few hours ago. I believe they have a monotherapy trial as well. You may want to reach out to the PI
MarionJanuary 8, 2017 at 1:48 am #91469
I was looking for you two on Thursday. Dr. Damjanov and crew aren’t very talkative about other patients. Dr. Denlinger knows she can give out my number or email to any fellow cholangio patients. No HIPPA here! lol
I’m so sorry things didn’t work out, and there are more mets to his spine. I hope you can get into Keytruda, too. At least that will be much closer, too!
The optivo is also with Something, possibly interferon. I have to meet with Dr. Denlinger to get the details. Next Monday is that day.
And Lainy… Thanks so much. You are a very special lady, too.January 6, 2017 at 4:16 pm #91468lainyParticipant
Dear Googily, I am so sorry to read about Bill but I guess the idea is to keep on trekking as we never know what new treatment may be sitting around the corner. So glad you met up with KRIS! I love it when family can meet up with each other as it is so very special. I met Kris several years ago and she is so special too. Wishing you and Bill the best.January 6, 2017 at 3:19 pm #91467
Unfortunately, Bill’s first set of scans, after 8 weeks on the drug, showed most of his tumors increasing in size, so his participation is over. We’re looking around now for other trials. He now has bone mets in basically every vertebrae, but they are small and not impinging on anything yet or having any structural issues. One may be causing a stiff neck, but otherwise he’s doing okay.
He’s still only done gem/cis before this trial, so there’s always going to Folfox if another trial doesn’t leap out. (We are interested in one coming at Georgetown for advanced cholangio with keytruda + interferon, but not sure how long it’s going to take for it to actually get underway.)
But at least we did meet kris a few weeks ago!December 5, 2016 at 5:02 am #91409
I will be there this Thursday!December 1, 2016 at 6:03 pm #91411
Actually, we’ll be back next week, last of the weekly appointments, so then we’ll be on the same every other week schedule.December 1, 2016 at 5:39 pm #91412
I’m next week. We’re a week off! Darn.
Lainy and Melinda, you are so sweet. Two of the best people I know. And cc ambassadors, too!December 1, 2016 at 4:20 pm #91413
I think we’re just missing each other. We got here at 10 and are now in the exam room, waiting. I keep looking, though!December 1, 2016 at 3:51 am #91414mbachiniModerator
Kris is larger than life and can sing like a pro…….praying we get to do a little karaoke again in the near future!!December 1, 2016 at 3:42 am #91416lainyParticipant
Googily, I have met Kris and she is as kind and fun as she is “tall”. She also looks like her picture here. She is excellent company and a real champion of a survivor!December 1, 2016 at 3:33 am #91415
Marion, I did have cc in my bile duct, but never tumor sized. It was enough to close up the duct, tho. I am ecstatic about that! The other new areas are either stable or shrinking. I hope it works as well at the 100mg dosage.
The vision started slowly then continued to decline. I think it’s been pretty stable (not good, but stable) for the past few weeks. Going to eye dr. again soon for yet ANOTHER prescription!
Googily, my next appt is wed for ct scan at 11:00. Thurs with Dr. Damjanov at 9:15. Will be there until around noon prob. Look for the tallest woman in the room who is playing Pokemon or on my iPad. Sitting by myself.
KrisNovember 27, 2016 at 2:16 pm #91418
Kris, that’s such great news on not needing the stent replacement. (Not so much on the vision stuff, though)
I admit to looking around the waiting room at Penn to see if maybe I recognize you.
Bill is now midway through his third week on this trial–the only side effect he is having is nausea, which has been a problem for him throughout this journey. Unfortunately, the trial doesn’t allow Zofran, the drug which worked so well for him before, and we’re still trying to find an optimal combination of Ativan and Compazine that keeps the nausea at bay and doesn’t have him sleeping for 16 hours. (Also trying to get him to eat smaller meals more often, but that continues to be a challenge–but at least that shows his appetite is still good!)
His AST levels have bumped up above normal, and ALP is still high (probably thanks to the bone mets), but all other liver functions are great.November 27, 2016 at 7:39 am #91417
Kris…simply amazing. I believe you are the first person to report complete tumor regression eliminating the need for a stent replacement. Crossing my fingers that the reduced dosage will take care of the vision impairment. Was it coming on slowly or did it happen suddenly?
Hugs to you,
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