Search Results for 'yeliva'

Sept 29 2020 was my 4 year “diagnosaversary” of ICC. Since the latest post back in March, there have been some changes to my journey.  I am still on lovenox for the blood clot and was told that I most likely will be until a year after I finish chemotherapy (which currently has no end date in sight).  In July, I had 5 treatments of radiation to my L1 vertebrae because a scan showed that it had grown and it was giving me considerable discomfort both at rest and with any sort of movement in the low back. Fortunately, the pain has disappeared after the radiation with minimal side effects (mostly acid reflux).  In mid-August, I had my scheduled quarterly chest, abdomen and pelvic CT scans which showed growth in the lung mets. (Currently all of my disease is in the lungs and spine, my liver is clear). Everything is still pretty small however some mets had doubled in size (from 0.3cm to 0.6cm or from 0.5 cm to 0.9cm). My oncologist and I decided to switch it up a little since I have been on gem/ox for over a year. (I have the ATM mutation which responds well to platin drugs which is why they think I have tolerated it so well and for so long).  I started Folfiri at the end of August and have had 5 treatments so far.  After 2 treatments, I had my regularly scheduled brain/skull and spine MRIs. They showed progression in the spine, now with mets in T10, T11 and T12 in addition to the one in L1 that had been successfully radiated. My radiation oncologist thinks it was too soon after the start of Folfiri to say that it it wasn’t working and we are waiting until my next set of scans to see what to do about these new spinal mets. So far I have no pain from them at all. I should have new scans sometime in November.

I am still a patient at MSKCC but I keep in contact with Dr. Javle at MDAnderson as a sort of second opinion. He agrees with the reason behind switching from gem/ox to Folfiri. He mentioned if the Folfiri isn’t working I could also look into a PARP inhibitor trial, an ATR inhibitor with or without immunotherapy or specifically TC-210 trial which is both at MDAnderson and at MSKCC.

I would appreciate any input from others in a similar situation. What else have you tried after traditional chemo gem/ox or gem/cis or Folfiri/Folfox? Has anyone been in the Yeliva trials? Unfortunately my ulcerative colitis (which is controlled) is preventing me from being accepted to many trials (especially the immunotherapy ones), even though my gastroenterologist doesn’t think it should be a problem.

Thanks, Katherine

Dear all,

Yesterday at the NIH we got my dad’s 2nd scan and there was peritoneal growth and dilated bile ducts. so they don’t think immunotherapy trial is working.

I hope somehow we will have a delayed response – although the trial doctor was very pessimistic about pseudo-progression for biliary cancer. But they don’t have the data yet from this trial, so i don’t know how he could know that… we were only the 2nd biliary patient on the trial, so how far along could the timeline be? Maybe he means other immuno trials… but what if the ablation made a difference? or the combo of anti pd-l1 and anti ctla4? They seemed to really discourage the idea that we try more immuno.

The labs showed elevated LFTs (all over 3 times normal upper limits) but low bilirubin. Perhaps related to the dilated bile ducts – which on the scan it says may be caused by hilar infiltration? Does this mean he has mets to the lung now?

Nobody mentioned this but I read on the scan report that they saw biliary pneumonia?! I didn’t know that was possible, or what we are supposed to do about that.)

So they said just wait and see how LFTs are next week – so we’re just supposed to hope it goes down on its own? They said with elevated LFTs, he can’t do this or other treatments anyway. I can’t tell if they were just beating around the bush because the dilated bile ducts and elevated LFTs without clear solvable cause are so dire? I have no idea how dire it really is.

His constipation pains get so bad (even with constipation meds) and they mentioned that happens with peritoneal mets. So is there nothing to be done about it??

But when he’s not having one of those pain episodes, he is strong enough to swim 30 laps almost every morning! I mean, of course he is fatigued and much weaker than before but it just seems impossible that there is nothing else we should try. Are they trying to tell us the end is near? I am so scared, and no idea what to do next.

I was looking at the Yeliva expanded trial  because they had one complete response, but I’m scared of side effects and whether this will just  be harder on him. How do we  give him the best quality of life possible for as long as possible? I don’t even understand how palliative care could help with his constipation/digestion pains if it’s stemming from peritoneal mets… just mask the pain and knock him out with painkillers?!?

I have no idea how terribly to take this news… more scared than ever.