An Introduction

I confess I don't really 'do' social media. It dawned on me over the past couple of weeks of having joined this forum, and replying to some posts, that I may have overlooked the first principle of actually introducing myself properly. Sorry about that! I have now added a bio under my profile.

I have just been recruited to a clinical trial studying how it may be possible to induce tolerance in liver transplant patients. I am thinking about posting more about this if anyone is interested.

All the best. Chris.

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  • great Bio Chris thanks for sharing ,,as for you not being into social media ,,,,we are all different ,,,keep the posts coming your knowledge is power and strength for others inc me ...all the best to you and your family Matt

  • Interested in hearing more

  • Hi Chris - yes I would be very interested to hear more about this clinical trial. Does the trial involve reducing your immunosupression?

  • Hi Ruswati, I will start a new post soon and describe what is involved. It does involve some changes to the immunosuppression regimen.

  • Great I will read it with great interest.

  • I did a trial at Kings regarding T-Cell therapy. In fact I was the first patient on the trial. Is this the one you're on?

  • Hi Rodeojoe. I presume the one you are talking about was where they were recruiting volunteers pre-transplant? I was approached and could not do that one owing to the results of my virology screen. The one I am talking about now is I believe the second phase. How did you get on? Were you able to reduce or stop immunosuppression as a result? Would be good to compare notes by PM if you are interested. All the best, Chris.

  • Here's some links

    journal-of-hepatology.eu/ar...

    ncbi.nlm.nih.gov/pubmed/267...

    The trial is call Thril, no idea what that stands for. But I know I was the first patient. Yes, I was recruited pre-transplant and had some bloods taken. These were then manipulated and harvested and introduced back into me 3 months post transplant.

    I got to take some ATG immunosuppresants, soon after transplant.

    It was my understanding that as the first patient I got a lower dose of the T-Cell therapy and wouldn't necessarily be too beneficial.

    However since then I've dropped the tacrolimus altogether and I'm only on 1mg, 2mg alternate days of sirolimus. I believe this drug would not be sufficient on it's own were it not for the T-Cell therapy.

  • That sounds like a good outcome for you. The Sirolimus is supposed to be less toxic to the kidneys than Tacrolimus, so that has to be a plus. I don't know what ATG is, I don't believe I will be taking that from what I know so far. It is phase ii of Thril that I am doing. I will put up some posts as I go through the process.

  • I'd be really interested. Have you had any treatment so far?

    ATG en.wikipedia.org/wiki/Anti-...

    Do you know Gavin Whitehouse?

  • Just tests and a change of meds so far. I will start a new post and put in more detail later on. I see Prof Sanchez mostly, and now Gavin Whitehouse for this study. I would't be surprised if we have bumped into each other at Kings at some point.

  • I've also started seeing Prof Sanchez now. Looking forward to your post.

  • Hi All. Am new here.

    Yes please Chris. I have recently been diagnosed and am in the S.E. too. I am currently trying to balance my life within the parameters still open to me and would greatly appreciate any and all good advice from my peers. Clinical trialling is something I have thought about and intend to discuss with my consultant later this week but I will follow keenly, anything you think may be of interest.

    Kind regards to ALL.

    C

  • Hi Chris's I was wondering what oxycodone are as I'm going to royal free soon for transplant interrogation wrong word keeps happening with the old brain I mean the test they do can't think of the bloody word at the moment anyway my hep consultant said I can't have any pain killers thanks bri

  • Thanks for that I'm end stage as well so I have to see consultant on the 27 November so I'm going to broach the subject with him again keep filling in my profile on here but every time I do it it says save changes so I press ok then it wipes them any way take care talk soon bri

  • Best of luck with the consultation on 27th.

  • Thanks