vedic

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,

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.

Thank you Marion for the info, advice and the encouragement. Thank you very much.
Luckily, I do not have to incur any cost of transportation or hotel. The trial is in Morristown, Nj and I live only an hour away.

I am meeting the doctor tomorrow. Will post again after my first appointment.