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Islet Treatment

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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
martindt1606

martindt1606

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Relationship to Diabetes
Type 3c
I was signed off by the consultant who had been treating my pancreatitis yesterday as it was removed in May. At the end of the appointment he said I should keep positive with the insulin as he expected that within 5 - 10 years insulin treatment would be phased out with Islet Transplant becoming the primary treatment.

Have searched the forum but cannot identify any previous discussions (sorry got bored looking). There are random comments.

Any views on this timeline or details on what is involved.
 
Hi Martin.

I was reading about the same sort of thing 20-30 years ago, but nothing has ever materialised.

Unless he knows something secret, I think he's being a bit optimistic and possibly naive in getting your hopes up.

But we all live in hope 🙂

Rob
 
I am sceptical that islet transplant will be successful, although I am by no means an expert. However, this is in reference to Type 1 diabetes being caused by the immune system attacking the islets - but I'm assuming since your diabetes is caused by pancreas removal, you didn't have this problem with your immune system? If this is the case, islet treatment may well work for you - but for the majority of Type 1s it will not. I think an artificial pancreas is much more likely.
 
The problem with transplanting anything is that if you didn't actually grow it yourself there's a chance you body will reject it, that is, as i understand it, your immune system things that the donor organ or cells is some kind of visiting infection and tries to fight it off. To avoid this doctors usually suppress the patient's immune system using very strong drugs. If you's had a pancreas transplant you'd be able to make your own insulin again but be on Tacrolimus or something else vile, for life instead.
I'm not sure about cell transplantation, but i think the sticking point is rejection still and if somebody could discover a way of making your body accept the new "bits" without fighting them, then it'd be a doddle and we could all apply for new pancreases/pancreai (anybody know what the plural of pancreas is). It could happen, fingers crossed for everybody needing donated organs really.

Rachel
 
Hi there,

As with any transplant there is the risk of rejection. This is lessened by putting the recipient onto immunosuppressant drugs such as Cyclosporin to reduce the chances of rejection yet this still happens. This has been done a few times, you can count it on one hand the number of times an islet cell transplant has been done but as I understand it is still in it's infancy.

For what it's worth I'd rather stay pumping as I am and wait for something else as opposed to remain immunosuppressed for the remainder of my life.

Tom
 
Richard Lane, president of Diabetes UK, had islet cell transplants - and is back pumping as the cells basically died after a while, in layman's terms. I too would be very put off by the drugs I'd need to take to stop my body rejecting the cells, and all the side affects they come with.

When I think about a cure/transplants working/etc - I think of coming off any type of diabetes-related medicines, insulin, immunosuppressant drugs etc - not going from one lot of drugs to another.
 
TomH said:
...For what it's worth I'd rather stay pumping as I am and wait for something else as opposed to remain immunosuppressed for the remainder of my life.

Tom
Click to expand...

Agreed! Better the devil we know 🙂
 
bigpurpleduck said:
Agreed! Better the devil we know 🙂
Click to expand...

Too true!

Case in point, when I was working in a haematology lab last month and the start of this one we had many leukaemia patients on the haematology ward who had received bone marrow transplants. A large majority were rejecting those transplants sadly despite what was being done.

Tom
 
You might be interested in these articles:

From 2005:

http://www.sciencedaily.com/videos/2005/1010-insulin_independence.htm

2007:

http://www.sciencedaily.com/releases/2007/09/070904175432.htm

2008:

http://www.sciencedaily.com/releases/2008/06/080609141225.htm
http://www.sciencedaily.com/releases/2008/07/080707091309.htm

2010:

http://www.sciencedaily.com/releases/2010/02/100201171413.htm

So, progress is being made in various areas and hopefully will continue. For people who can't achieve control on injections or even pumps this may be the only solution at present.
 
Transplanting islet cells is the easy part - the hard part is them being rejected and having to stay on very strong drugs for life. Even then there is no guarantee that the same thing that triggered diabetes in the first place wont happen again, so the scientists are now working on a coating for the islet cells to 'potect' them from being attacked (JDRF are working on this now) and once they have worked this out then we will be closer to a 'cure' or 'reversal' of diabetes. Sorry if my explanation isnt too clear - I know what I mean in my head - just have trouble putting it into scientific terms..🙂Bev
 
tracey w said:
Ha, that must be it Bev :D
Click to expand...

It must be. The first time I read it through, I read it in my accent and didn't understand a word. The second time through, in scouse, and it suddenly became crystal clear! 🙂

In a bit!

Andy 🙂
 
the 'coated cells' idea sounds great, otherwise I think I prefer MDI to replacing it with immunosuppresents...
 
A couple of years ago i was sent to King College hospital to see Professor Stephanie Amiel to find out about this , i was not seen as a suitable candidate because i was overweight amongst other things and i would have to go on antirejection drugs which cause all sorts of nasty side effects so at the time the cons outweighed the pros . Below is a link that tells you a bit about Professor Stephanie Amiel she has a lot to do with islet therapy .

http://www.ukdrn.org/csag.html
 
Last edited:
martindt1606 said:
I was signed off by the consultant who had been treating my pancreatitis yesterday as it was removed in May. At the end of the appointment he said I should keep positive with the insulin as he expected that within 5 - 10 years insulin treatment would be phased out with Islet Transplant becoming the primary treatment.

Have searched the forum but cannot identify any previous discussions (sorry got bored looking). There are random comments.

Any views on this timeline or details on what is involved.
Click to expand...
Hi there.

Islet Cell transplantation is available but the selection criteria is very strict. It is still a research study with most transplants having been done in Canada and the US. Also, those people who have it done often don't have a lot of other options.
I am one of them and am really thankful that I have had it done. I was having a lot of severe hypos with no warnings and 'they' and my diabetes were controlling my life. I have been off insulin for almost a year (after 42 years of taking it).
Even though it has really not been an easy path for me to take, it's been worth it.

The research still goes on for safer immunosuppressants or a way of coating the islet cells so we don't reject them.
There's a Centre at Oxford Radcliffe Hospital as well as the one mentioned in London. I believe there is also one in Manchester.
Lack of money for research and of organs donated, continues to be a problem for all of us hoping for a cure and/ or tranplants.

If you need more detailed info I'll add more.
 
Hi wriggler, welcome to the forum 🙂 Hoping things continue to go well with the transplanted cells - must have felt very strange after 4 decades of injections to no longer be needing them!
 
WOW, with this thread being read by 381 of us so far, I think it sends a clear message out that we all wish for a cure, we all get annoyed with the management of our illness and I think it is really warming that this forum bonds us all together.

I am amazed that throughout the volume of users on the forum, 'wriggler' has joined and shared his life-changing experience, it is nice to have a 'real life' account rather than doctors dangling that carrot...

I think wriggler, a bit more info would be really useful for us, maybe things like the side effects you have, do you need 'top up' insulin, have you had the 'all clear' or still under review, how long did the process take from being selected to the op, etc....

bye for now...Suze
 
wriggler said:
Lack of money for research and of organs donated, continues to be a problem for all of us hoping for a cure and/ or tranplants.

If you need more detailed info I'll add more.
Click to expand...

...sorry forgot to ask, I thought I read somewhere that family members can donate and are ideal, but needed 3 separate donors? Or did I dream all that???
 
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This thread is now closed. Please contact Anna DUK, Ieva DUK or everydayupsanddowns if you would like it re-opened.
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