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  • in reply to: INCB 54828 #94126
    vedic
    Participant

    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,

    in reply to: Survival…Please tell us your latest milestone #64800
    vedic
    Participant

    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. For details, see:
    https://clinicaltrials.gov/ct2/show/NCT02924376

    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. Its a multi-site trial at 36 locations across USA. still recruiting new patients.

    in reply to: INCB 54828 #94122
    vedic
    Participant

    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.

    in reply to: INCB 54828 #94120
    vedic
    Participant

    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.

    in reply to: INCB 54828 #94119
    vedic
    Participant

    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.

    in reply to: INCB 54828 #94117
    vedic
    Participant

    Hi Marion,
    I was treated or CC at Sloan with Gemcetabine and Oxaliplatin.
    Biopsy and DNA study showed FGFR gene mutation.
    So my doctor has recommended INCB054828 trial.

    Before I agree to enter this trial in phase 2, I feel that I must know full details of how the phase 1 trial went. But that info is not available. I have checked the link at clinicaltrials.gov. that you gave above.
    But it does not give the results of the phase 1 trial.

    Can you provide any information about the phase 1 trial of this drug?
    I have an appointment on Thursday 3/23 with the doctor who is conducting this rial in Morristown.
    Will very much appreciate any info you might have.

Viewing 6 posts - 1 through 6 (of 6 total)