INCB 54828

My husband just completed tests at Hopkins on Monday, 8.14 to determine his eligibility for this study. The nurse and doc said it looks very positive for my husband; in fact, he was given a patient number that day. He currently has 15+ lesions in the remaining portion of his liver (he had resection in Nov. 2015 followed by gem/cis, then radiation; recurrence in May 2017.). Your posts really give me hope for this study. I asked about immunotherapy trials, but the doctor explained that if this trial doesn’t work, he can try an immunotherapy trial, but once he’s tried an immunotherapy trial, he won’t be able to enter other trials. Has anyone else heard this?

Thank you!

Yeah, Kim, it’w working! Thrilling news.

Hugs
Marion

Rich started this trial June 29th and right away his stomach issues were resolved,he did have some vision problems the first cycle (fuzziness) but after the second cycle that has gone now too. He has a little bit of fatigue like he did with the chemo of Gem/Cis. To start his CA19-9 was 282 and now is 97 and today he had his first CT Scan since starting the trial had he has had a 10% shrinkage in the liver and the lung nodules! So he is off to a great start and we pray for many more cycles.

Kim

Hi Jill,
You are absolutely right. This experimental drug is indeed a dream compared to chemo or any other treatment modalities available for cholangio.
I have completed five cycles of treatment (each cycle = 3 weeks) and have had two cat scans (one every six weeks) after the treatment started.
When I started the treatment, I had a very large tumor (7 cm x 6.7 cm) and it was in a location where resection was not possible and chemo had failed. Thus, I had no recourse. I was desperately looking for a clinical trial to join in.
I am very glad to tell you that this trial has totally changed my outlook. From the day I started taking this experimental drug, I have started feeling better in my overall health – especially GI issues (no more constipation, bloating, lack of appetite, etc) and the each cat scan has shown significant incremental reduction in the size of my tumor. The last scan showed its reduced to 4 cm x 3.5 cm…. Its Just beyond my wildest dreams! I feel like I am in great health and friends whom I meet frequently say that I look really good, well….

So I’d encourage your brother-in-law to go into this trial with hope and high spirits, as I am sure this will help him as much as its helping me.
Best wishes,

Vedic…excellent new and thanks for sharing it with the global cholangiocarcinoma community.

Gavin will highlight this posting with the clinical trials.gov identifier.
https://clinicaltrials.gov/ct2/show/NCT02924376

Hugs
Marion

I am so glad to inform you that I was selected for the Phase 2 clinical trial of Incyte Corp experimental drug INCB054828 for CC with the FGFR gene alteration.

I have taken the drug (just a pill) for the last 5 weeks. I have experienced absolutely NO side effects (which is such a contrast from my experience with the chemo I have had a few months ago with horrible side effects and weight loss). Instead I was pleasantly surprised to feel significantly positive effects of increased appetite, increased energy and the mouth taste (that had become bad after the chemos) returned to normal. Better appetite and better taste has resulted in weight gain (I have been a very slim guy all my life, then I started losing weight and appetite a couple of years ago, then suffered drastic loss of weight after taking chemo). so weight gain was such a welcome surprise.

After 5 weeks of treatment I went for a CT scan. It was compared to the scan at the start of the study. I was thrilled to find that my tumor had shrunk (from 7cm x 6,7 cm) to 5.9 cm x 5.2 cm.
That’s a huge reduction in 5 weeks, …with NO side effects.
I feel so positive about this drug that I hope it will fully cure my disease at this rate.
Actually, I felt from day 1 that this drug was restoring my GI tract to the normal state.

I am writing to let other CC patients know of this powerful drug, how successful result I have experienced of this experimental drug that has started in phase 2 in January this year (2017) and I participated in the trial starting in April. Any one with CC with FGFR gene alteration – please find the nearest trial site, it can be your life saver.

i met with the doctor who is managing the trial in Morristown. I was pleasantly surprised that the doc and his associates were very positive, and more hopeful than I had expected. They advised me that the side effects of this drug are much milder than I had experienced with the chemo.
So I have signed the Informed Consent and started pre-screening.
They informed me that they will send my history/test results to the sponsor: Incyte corp.
Incyte will let me know in a couple of weeks if they will take me in this trial.

Vedic….results of Phase I rarely are published (if ever). The best way to go about it is to discuss with your physician prior of you signing up for this trial, you need answers to your questions.

Also, investigate cost of transportation or hotel (or both) if indeed you are considering entering the trial. Hospitals may be accommodating, but they won’t offer unless they are asked.

Too many trials can’t recruit, hence it’s in the best interest of the Investigator to accommodate your needs. Assert yourself dear Vedic, you have the power to do so.

Good luck and hugs and please keep us posted.
Marion