INCB 54828

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    Good evening,

    My husband just finished his first 2 weeks of treatment on the trial. So far, his phosphorous is elevated and his lips look like they are sunburned: cracked and chapped and he says they burn. Otherwise, he’s doing well. I’m hopeful that side-effects=treatment working. Side effects are much milder than chemo.

    Good luck to Rich and hope he receives some relief of side effects.

    Have a good weekend all.



    Thank you for the update. I am sorry to hear Rich is experiencing this level of discomfort. But stable results in his latest scan is decent news although you were hoping for something better.

    My own hand foot syndrome experience ended up being just foot syndrome, but I expected it to turn up on my hands so I took someone’s advice and invested in a bag of soft cotton gloves from amazon. It had been recommended to me to put them on at night after applying cream. There are a lot of different brands – the ones I got were in the health department labeled “soft overnight glove.” Also – in addition to a urea-based cream I also used some of the lidocaine numbing cream I had been given for my chemo port on my feet which helped with the discomfort – I wonder if lidocaine cream would work on hands?

    Hopefully the celebrex will take quick care of the pain Rich is experiencing. Please keep us posted. Sending positive thoughts and prayers your way.

    Regards, Mary


    Rich went to UW Madison yesterday for his second CT Scan since being on this trial and it came back as “stable” no shrinkage. I have to admit a little disappointing I know with this cancer stable is good just didn’t think we would be seeing stable results so soon into this trial,he has only had 10% shrinkage overall. His last CA19-9 was 97 and it is now 187 so that has us worried to.

    This last cycle of the drug has been hard on him with more side effects than before. Has now started with hand and foot syndrome just in his hands,they almost look like they have been burnt with the skin peeling off of them they are so raw and sore. He has been using our son’s eczema cream and that has helped alot. He’s also experiencing alot of bone or maybe joint pain making it hard to walk and hold or open things with his hands,the Dr did give him Celebrex for the joint pain,hopefully it will help.

    Praying this next cycle is easier on him with better results.

    Have a good weekend everyone.



    Hi, Sandy,

    I printed the questions from these sites and asked them at the initial meeting with the nurse:

    I also inquired about who pays for care for any side-effects resulting from the trial meds.

    Good luck!


    Good luck, Arapro! My husband starts this Fri., 9.8. I hope we find that it truly is a miracle treatment!


    Hello! I am meeting with the research nurse and doctors this Friday, September 8 to start the screening process at John Hopkins. Are there any questions that you can think of that I should ask?
    Thank you in advance!


    Hi Mary,
    How are you? Hope you are well.
    Thank you for your wishes and prayers. They are well received :)
    I am still writing my blog, although I haven’t written anything in the last couple of months. The political situation in Venezuela has deteriorated to a point where I do not feel comfortable writing about me ! But I guess it is time for a new post !
    Stay tuned.
    Regarding the trial, did the EKG yesterday and they did the blood work, all 10 or so tubes of it ! It is 8am in NY, got an appointment with an oculist at nine.
    Then later today I am seeing my endocrinologist, and then at 7pm a CT scan. It is all to set a baseline.
    I can tell you all my blood values where fine, only my AFP was at 640 – a Little over double in two months but still low for me ( When I got diagnosed a little over two years it was 9000 ) My CA 19-9 came back at 46 u/ml which is just over the limit of 40. This last was a first ! Hopefully my pancreas is ok. I know I have mets in my perituneum and hopefully my liver continues to be ok.
    I guess we will know after th CT Scan this evening. But to tell you the true I do not even care that much. I am hoping for this next pill. And I am preparing to go back to florida tomorrow and then escape hurricane Irma ! I feel great, haven had any chemo in 3 or 4 weeks. I was on Gem/Cis for 3 cycles before the trial started. So I feel great ! I am still doing my programming course :) I am seeing you all good vibes. Will keep you all posted,
    Kind Regards,





    Best wishes and prayers for great results as you embark upon this trial.

    Please keep us posted on your experience – this is so helpful for other patients considering trials.

    Are you still writing your blog?

    Regards, Mary


    I am starting this trial in a couple of weeks. Doing the pre testing tomorrow.
    Wish me luck !


    Hi, Catherine,

    We’ve been happy with my husband’s care at JHU. To be honest, after hubby’s diagnosis, we were referred to Hopkins by a local oncologist ( it’s only about 1 hour away). We were VERY pleased with the surgeon, Dr. Jin He. Hubby’s current oncologist, Dr. Zheng, seems to be an expert (you can watch his talk at the CCF conference from 2015), but his bedside manner is a little lacking. I go in with many questions ( I do my homework as I feel it my job to know all I can to help hubby), but he’s not always helpful answering them. It feels like he expects us to follow his recommendations without question; he’s not dictatorial, just whenever I ask a question, he redirects us to his recommendations. I don’t feel we’re part of a team the way I’ve heard others on here describe. All of that being said,, as soon as my husband’s cancer recurred, he immediately had the genetic testing done and recommended a clinical trial. He is kind and soft-spoken. The clinical trial team has so far impressed us with more of a team feeling (the trial is at Hopkins); I ask many questions which are always fully answered.

    We’ve come to view Hopkins as the experts and our local oncologist (works with Hopkins) is the one who provides explanations and discusses options with us.

    This is all my perspective. I asked hubby how he feels about his treatment at Hopkins: “It’s been great! I like Dr. Zheng.” When I asked how he feels about the surgeon, Dr. He, “You know how I feel about him. He’s terrific!”

    I’m not sure how helpful my response has been. So far, we’re good with things. If things don’t work with this trial, we’ll look around at other locations, like NIH (also easy driving distance) and then more distant options.

    Please let me know what you end up choosing to do as it may be very helpful to us in future.


    Great news Kathy!!!

    Are you happy with ONC at JHU? And, can I ask who it is? Now that our great IR is not at UMD, I’m wondering if we should be moving Mom to a hospital which treats more CC patients.

    Thank you,


    Kathy – that’s great news! Keep us posted on his progress!


    The nurse phoned Thursday AM to report that my husband, Brian, can start the study. He’ll begin Sept.8. I’m sooooo hopeful! The good stories here really give us both a positive feeling!


    Jill –

    What great news!!!!!! I

    Better results and less side effects. YEAH!!!!!

    Please give him our congratulations and best wishes,



    Hi all!

    My brother in law had his 1st scan since starting this trial – phenomenal results! BIL had four small tumors to start, all below 2.0cm (he had a resection and ablation prior to starting the trial) the two tumors that they marked to follow went from 1.2cmX1.2 to GONE and 1cm to .6x.5. Of other two smaller tumors, one is GONE completely and one is 0.3x.0.2 AND, the best news . . .no new tumors!!!!

    His main complaint of the medication was salty taste to water, occasional lack of ability to taste food and high levels of phosphates. This medication has far fewer side effects thus far to chemo. We are so excited that this trial is working, we pray it continues to work and we see no new evidence of this horrible disease.

    Prayers to all families and individuals effected by cholangiocarcinoma.

Viewing 15 posts - 31 through 45 (of 63 total)
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