Islet Cell Transplantation

Is anyone enrolled in one of the islet cell transplantation studies? If yes, what has your experience been like so far? Thanks…

I am pursuing an islet cell transplant at U. of Minnesota. I have almost through with the preliminary testing and am waiting to find which of their protocols I will be placed into. I have been searching for people who have acutally done this without much success.

hi drrps3 and Kathy - I am enrolled in the study at Weill Cornell Med Center In NYC. I was notified that I was selected around July 2006. I got all the necessary outpatient testing down almost immediately… The study was initially to begin that Fall, but there have been delays as there can be in science. There has been an issue with the enzyme for islet isolation and so there is.a delay until this is resolved.

A plus for both the study and me is the fact that I already used the drug protocol of non-steroid anti-rejection drugs Cellcept and Prograf following a kidney transplant in Nov 2005. The study will use the same protocol so this is no additional risk from those medications. Those meds have given me some relatively minor gastrointestinal problems and make me a little more likely to get cancer, but that is small price to pay (at least as long as I have insurance to pay for them).

There is a relatively heavy testing cycle after the transplant. For me, this will entail trips to the Med Center for followup tests, not too unlike what I have gone through with the kidney transplant. I am glad to only live an hour by train out of NYC and my job is supportive of me going for this.

There is at least one other person at TuDiabetes who has writtten about having receiving a successful islet transplant. Good luck to both of you.

I am interested in finding out how to go about this myself. If I do get to do this, I’ll be sharing my experience all right :slight_smile:

http://www.clinicaltrials.gov/ is where I learned of this study. It allows a user to search for, say studies about diabetes in New York.

http://www.cornellmedicine.com/research/islet/patients.html
is the website for the currently suspended study I’m in.

Thank you steve! I have saved the links so I am able to share any experience if I do participate in the study.

Kathy,

Who is your MD at U of Minn? I know a lot of people who have gone there to have their pancreas removed for Chronic Pancreatitis and had an Auto Islet Cell Transplant. They saw Dr. David Sutherland. I had my pancreas removed and an auto islet cell transplant performed for Chronic Pancreatitis at Emory University in Atlanta, GA. Mine was done July 2004.

Aaahhh, yes, I was told of this problem with the enzymes used in June or so of 2007. There is a very small chance I could have contracted mad cow disease!! I laugh when I think of this. I now say this is my excuse for oh so many things!! LOL

Robin,
I am still waiting to hear if and when I will be accepted into the study. The principle investigator is Dr Hering.
Are you free of insulin? Which immunosuppressant drugs are you on and how are the side effects?

Kathy

Hi Kathy…

Thankfully, since I received my own islets, I do not have to take any immunosuppressants. I am free of insulin too! My problem is severe hypoglycemia unawareness. I can drop to 40 and not even realize I am there. I also drop very fast. For instance, I can drop from 120 to 60 in 30 minutes.

MMMOOOOOOO

ROFL, Steve!!! I did ask the Dr. if I started to MOOO, what should I do!!! He laughed. One thing I did say was, I am definitely protected by the Americans with Disabilities Act (ADA)!!! LOL Now, if I use profane language at work, I can just blame the mad cow disease!! :smiley:

Sorry I didn’t see this sooner. I had an islet transplant at University of Illinois Medical Center at Chicago (UIC) May 2006. I have had one transplant and have been off insulin since July 2006. So far things are going well. If you have questions I’m happy to answer them.

Have you heard yet if you have been accepted?

UIC has started doing transplants again with the new enzyme. I would think other centers have restarted too. good luck!

I am at the point now where I go back to U. of Min to have another blood draw and sign the consent form. I am really excited and would love to hear more about your experience.

Kathy

How are you doing this far out since the transplant, YayIslets? And how have you been getting on with the immunosuppresants? The potential side effects of the drugs worry me, so I’m really interested to know about your experience.

I am still doing well, down to 10 units of insulin/day. After the stronger immunosuppressant that I took pretransplant, thymoglobulin, which left me feeling weak, I have not had any bad side effects. I have 2 mouth sores, but they are not too bad, and seem to be getting better. I am still working on gaining some weight back, but besides that, I feel back to normal as far as general health. It is so wonderful not to have to worry about wildly fluctuating blood sugars. So all things considered, I feel very much ahead of the game.

Kathy

I am just starting out with the U of Miami DRI only had first round of blood tests on nov 14 thanks for sharing your input all that have had islet transplant