Hi, I’ve recently qualified for the islet cell transplant program at City of Hope. I’m wondering if anyone in this community has participated in this program? My next step is to provide additional information to them (Auth for release of medical information and one month’s data from my CGM). Thank you.
I didn’t recognize the name of the city. Is the study location northeast of Los Angeles near Duarte, California?
Good for you for volunteering! Please keep us posted with updates.
Yes, located in Duarte, California.
City of Hope is actually one of the research organizations Beyond Type 1 donates money to.
Is this the research you will be participating?
Thank-you for stepping forward !! I’m curious as to how it goes and how well you cope with the anti-rejection drugs.
It appears that City of Hope researchers are experimenting with regulating instead of suppressing the immune system. From @Mila’s link posted above.
At City of Hope, our experts are advancing breakthrough interventions that correct autoimmunity by regulating — instead of suppressing — the immune system. Our innovative approaches aim to restore a balanced immune system in order to stop its attack on insulin-producing beta cells. We are also endeavoring to reawaken or boost a patient’s remaining beta cells, or regenerate beta cells, in order to help them produce insulin on their own. These therapies represent a radical departure from traditional treatment methods that target the consequences of the disease rather than its cause (insulin insufficiency).
We are also conducting research aimed at balancing the immune system by expanding and re-engineering immune cells that control and direct the fight against disease. This new approach promises to both balance the immune system and provide a healthy environment for new beta cells to grow and produce insulin.
In recent years, research from our program has demonstrated that an approach involving mixed chimerism reverses autoimmunity in type 1 diabetes in mouse models. Mixed chimerism is achieved when the donor and recipient immune systems are combined and stable — establishing a new immune balance that halts the attack on insulin-producing cells. Our researchers continue to move toward clinical trials.
Interesting. This is the first I’ve heard or read about this approach. Let’s hope it can help us!
Well, suppressing or changing the immune system to stop the autoimmune attack on the pancreatic beta cells has never produced any clinically significant regrowth of beta cells in all the thousands of cases in which type 1 diabetics have had their immune systems suppressed in order to tolerate organ transplants. What Dr. Faustman found was that after suppressing the immune system, something else was needed to spark the beta cells to regrow, and she tried INGAP polypeptide and spleen cells without much success. So I wonder what the tertium quid here is, or even if there is something else being given?
Yes this is the program. They want to screen me a little more. I also am concerned about the anti-rejection medicine and I’ll make a decision to participate after I know more. I’ll definitely keep you all updated.
This is very exciting!!! I can’t wait to hear how it goes. Hope it all goes well for you!!!
anti-rejection meds scare me. Hopefully, you won’t have any serious issues.
You are smart to be worried about anti-rejection drugs, which have a 30% chance of causing solid organ cancer after they have been taken for 10 years. They also cause a number of other serious complications, the worst of which is kidney failure, so it seems insane to me to try to treat diabetes, whose worst complication is renal disease, with drugs that cause the same horrible consequences as uncontrolled diabetes does. Only medicine could come up with something so stupid.
Hi Janet … I have a friend who started the trial last January … almost a year now. I’ve sent this post to him and asked him to respond. Or shoot me an email at email@example.com and I’ll forward it to him.
I’m in the City of Hope Clinical Trial, and now almost 1 1/2 years insulin free after 35 years of Type 1. Doing well and very happy.
Lots of things to talk about. I sent you an email after getting your email address from a friend, so would be happy to talk with you.
If anyone else is interested, please contact me or read my blog at:
By the way, I made the connection through Joanne11 (above). She is our T1 leader here in our local area.
Wow! It would be interesting to hear about the experiences from people who have made it “to the other side”, in particular about the immune suppressing drugs, side effects, risk of infections or anything else.
For me it would be a psychological shock not to have to think about insulin and what I’m eating after 27 long years of doing nothing but that.
I have talked with a few patients on dialysis who took the same type of immunosuppressive drugs used in this experiment in order to preserve their heart transplants. Those drugs, which are extremely toxic to the kidneys, had caused their renal failure. Every one of them said that they would rather not have had the transplant in order to have avoided dialysis.
how long have you been type 1? Is there a limit on how long a person could have type 1 and still qualify?
I´ve participated in an islet cell transplant program and it didn´t go well for me. (I had two transplants, late 2010 and early 2011). The anti-rejection drugs made me so sick and fatigued that I had to stop taking them and just reject the cells. I think I got all the complications possible to get, lost more than 30 pounds and my kidneys started to fail. I participated in a trial where the participants had to be healthy and have no complications from diabetes.
Five years after having quit the anti-rejection drugs I´m still struggling with recurring side effects and fatigue to the extent that I no longer can hold a job. This just to tell you that it can go wrong, and that the “worst case scenario” do exist.
Get all information available beforehand, so you are sure you can give an informed consent if you decide to participate.
IMO, seems like the cure is worse than the disease. If the odds of kidney failure is so high, why would someone swap taking insulin for diabetes, to having renal failure instead??