kgroft
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My husband doesn’t qualify for the study as he’s had previous targeted treatment (Pemigatinib), but Hopkins is applying for expanded use of this drug for him. The drug company already approved; we’re just awaiting FDA and IRB approval. After 18 months on Pemigatinib, hubby transitioned to the trial for Entinostat with Nivolumab; he had progression on the first 2 scans, so that trial ended for him. His Hopkins oncologist recommended chemo as the only option for him at that point, but we saw Dr. Goyal in Boston and she recommended expanded use of TAS 120. Considering his great response to Pemigatinib, she’s hopeful for the TAS 120.
My husband started this trial after having disease progression on Pemigatinib. At his first scan, there was growth, so another scan was scheduled in 1 month. The doctor explained that it may be false progression on the first scan; a second scan will provide more definitive info. The second scan showed continued disease progression and a new, very small met to the lung, so he is no longer on the trial. Tomorrow we’re back to Hopkins for another scan prior to starting expanded use of TAS120.
My hubby just finished his 2nd cycle and had his first CT scan on Monday, 7.12. The recist results show stable disease for the target lesions and progressive disease for the non-target lesions. We were told when he entered the trial that the first scan may show enlargement, but this does not always indicate failure as the 2nd scan may show shrinkage. He has no new lesions. We are continuing on the trial and they have moved up the next scan for one month, Aug. 12. The Entinostat dosage was reduced from 5mg to 3 mg weekly due to side-effect profile; it was reducing his quality of life (exhaustion, woozy, abdominal pain) and he was actually becoming depressed (very unusual for my husband). The reduction has already been better as the side-effects were decreased greatly. His bilirubin rose slightly, but is still within normal and his ca 19-9 has risen, but it has not doubled. We continue to feel very hopeful.
Is anyone else on this trial? I believe it is only offered at Johns Hopkins.
I apologize, I didn’t see how to do that search forms previously. You had posted the link to this trial. I posted an update on your thread.
This is the trial my husband has begun after having to leave the Pemigatinib (INCB054828). He is in cycle 1. He take 1 pill weekly (Entinostat) and receives 1 infusion biweekly (Nivolumab=Opdivo). His hair and nails are growing back. His eyelashes don’t appear as long. Hi lips are starting to blister. He has more bone/muscle aches and abdominal pain. I’ll try to keep everyone updated on his progress and this study.
My husband had great partial response to Pemigatinib: I believe he had the best result of all on the trial. Unfortunately, the response stopped and over 2 scans he has had growth. Incyte removed him from the trial after cycle 26. This drug was terrific while it lasted. Hope others have the same kind of results.
My husband finished cycle 26, but has now been removed from the trial due to lesion growth. We are now evaluating two other trials: TAS 120 at U of Penn and Entinostat in Combination With Nivolumab at Johns Hopkins. He had a really good run on Pemigatinib (INCB54828). He had 69% shrinkage of lesions. I hope we are just as fortunate with the next trial. I consider us incredibly fortunate that there are other trials available to him as he has had 3 lines of treatment to-date. Good luck to others on the trial.
My hubby and I are at a JHopkins today for scan results and to start cycle 26. Last scan was iffy; it showed some progression of a non-targeted lesion. I’m hopeful for good results today.
I’m so happy to say my husband is in cohort A and is one of the 19 individuals with Partial Response: he’s had 69% total shrinkage, even though he missed two cycles of the med due to surgery and a hospitalization. This drug has been an incredible gift for him. Our nurse explained that those with FGFR2 KIAA 12-17 seem to have the best response.
Thank you VERY much for posting the link to the article. 🙂
My husband is still on this trial at Johns Hopkins. He began cycle 17 today. In the beginning he had terrific shrinkage…total of 57% shrinkage. That has stopped, but his last 3 scans all show stable: all lesions smaller than 1cm.
Side-Effects:
Dry, blistered, cracked lips
Dry mouth, eyes, and skin
Lost toenails and fingernails
Head and body hair loss
Long eyelashes, some of which grow toward his eyes and lie right on his eyeball, so they are a little bothersome sometimes
Sore joints
Phosphorus hasn’t been a problem
Thanks so much for this link! This is promising news! My husband is part of the Camp LeJeune Contaminated Water group whose cholangiocarcinoma is attributed to the contaminated water. Because he needed a clinical trial, we’ve not been able to use VA services. He’s currently in a trial at Hopkins, but if he would ever need to try another trial, our next thought was the NIH; so we may be able to avail ourselves of VA care if needed.
Thank you!
Update on my husband, Brian…
He finished the first 2 cycles and the scan showed shrinkage with no new growths!! We’re VERY hopeful! We haven’t yet received the official % of shrinkage, but we do know there has been shrinkage (1.9 down to 1.5, 1.5 down to 1.3; a node has shown shrinkage as well). He has 15+ lesions, so the nurse explained that if the ones they are tracking shrank, all of them have most likely decreased in size. We left the hospital feeling SO HOPEFUL!!! Since May I’ve been worried sick, but now see some light around the dark clouds.
His side-effects to date have been much less severe than he had with chemo. Mainly, his hair has stopped growing in (since the end of chemo it started to regrow, but it has stopped), he has dry mouth and some change in taste, and the increased energy Sandy mentioned. He’s been undertaking major household projects of late, which I know make him feel accomplished and more like himself. His dry, cracked lips have healed as has the dry skin. His phosphorous had increased predictably, but he’s managing with diet modifications at this point. Otherwise, vision and EKG results have been normal. I continue to hope they remain so.
Thanks for all of the helpful info. and tips for side-effect relief. Wishing everyone a week of strength, healing, and peace.
Thanks for the suggestions, Kim. Brian just finished his off week and the cracked peeling skin has improved, but I did get him cream as well as lip balm which he’s been using. The nurse coordinator of his care mentioned that he’d probably start the phosperous-lowering drug eventually. Tomorrow he starts the next round of pills and meets with a nutritionist who will provide dietary suggestions.
I’m so happy to see the number of people on this board who are in this trial. I feel so positive and hopeful about it! The doctor told us we found a needle in a haystack in this study…we’re very lucky.
Good luck, Arapro!
