Islet cell transplants

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Paulbreen

Paulbreen

Well-Known Member
Relationship to Diabetes
Type 1
This discussion was split from an earlier thread about CGM here: https://forum.diabetes.org.uk/boards/threads/carbometrics-developing-needle-free-cgm.94546/

m1dnc said:
I with you Mike on this one. I remember my GP saying to me more than 25 years ago that stem cell technology will produce a cure for T1 "within 10 years". Still waiting.
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There is some light down that tunnel, I’m in a program for islet cell transplant and I’m just waiting to see if I get on the list for the procedure. It seems the big hurdle is getting the cells, unfortunately they come from someone who has passed away and they need to be collected very soon after death.
Stem cell therapy has long been in the news for many things but you never really hear anything beyond the hype when someone thinks of another use for it. I’m always waiting for the next big thing but I think in the last 5 years the dawn of CGM’s and smartphone technology we have seen the biggest advance in 20 years, fingers crossed technology continues to grow for us.
 
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The anti-rejection drugs are the hugely off-putting thing about islet cell transplants for the recipient. Even if I was offered one, I’m not sure I’d accept it if I needed to take those drugs.
 
Inka said:
The anti-rejection drugs are the hugely off-putting thing about islet cell transplants for the recipient. Even if I was offered one, I’m not sure I’d accept it if I needed to take those drugs.
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I can understand that, they worry me too but I’m considering the damage the diabetes will do in the next years and to be honest it takes more attention to keep my BG in line as I get older. If I’m accepted onto the transplant list then I’ll decide if I want to go ahead with it, some of the tests they are doing are to determine what drugs and how my body will react so I’ll be pretty well informed to make the choice that suits my needs.
 
It would be interesting if you find out a little more about the actual drugs they use @Paulbreen My concerns aren’t academic. I know an organ recipient who’s on anti-rejection drugs and that has put me off a lot.

I wonder if ‘only’ islets need less fierce drugs?
 
Inka I will post more as I find out, I’m under no illusion that there are serious considerations ahead, from what I read the side affects from the anti rejection drugs have some undesirable affects with little long term use feed back. On the other hand if someone doesn’t have a go we will never know
 
Inka said:
It would be interesting if you find out a little more about the actual drugs they use @Paulbreen My concerns aren’t academic. I know an organ recipient who’s on anti-rejection drugs and that has put me off a lot.

I wonder if ‘only’ islets need less fierce drugs?
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I saw a presentation about ‘nano encapsulation’ many years ago. Research that was under way where each islet cell is effectively wrapped in a barrier that allows it to do its job, while simultaneously protecting it from autoimmune attack. The plan was to do away with the need for anti-rejection drugs altogether.

Research is ongoing.
 
@everydayupsanddowns - hopefully the advances around the role and downregulation of IL-21 will one day stop the auto-immune attack from being triggered, and/or diminish the need for systemic immunosuppressants in allogeneic islet replacement. We've certainly moved forward leaps and bounds but like you, I've seen so many 'exciting' leaps forward over the years that didn't come to fruition, I maintain hope but not expectation.

@Paulbreen - great to hear about your islet trial. The use of stem cells is certainly growing and there are a number of pharmaceuticals using them successfully in COVID and other areas. Given the negative commercial impact on insulin manufacturers of any cure or dose-reduction, I think the conspiracy theory (earlier posts) on insulin replacement is pretty widespread. But given the pharmaceuticals' patent/market exclusivity for their respective "secret sauces", dictated by FDA & EMA (notwithstanding Hatch Waxman legislation and extensions in Europe for 'orphan' drugs), the manufacturers have to keep evolving to maintain market share.

If NN were to succeed in delivering glucose-sensitive insulin into the market, their first-mover advantage would be considerable, and the public acclaim and rapid switch (particularly in US where funding isn't dependent on CCGs and APCs as it is in the UK) would drive huge revenue to them.

I think we're all agreed we shouldn't get too carried away, but with CarboMetrics having already spent 20 years on it, and the massive market opportunity for NN and revenue it would generate from glucose-sensitive insulin, it doesn't hurt to stay hopeful! 🙂
 
Well good news I am accepted in to the program at medical university Carl Gustav Carus in Dresden, first appointment is October 5th, I will meet with the transplant team to discuss the procedure and most importantly the immunosuppressants
they are very open so far and have sort of outlined the basics but in the meeting it will be a little more in depth.
I'm not bought in yet but I'm more than interested at this stage.
 
Out of curiosity can they implant more than one recipient with the islets from one donor?
 
rebrascora said:
Out of curiosity can they implant more than one recipient with the islets from one donor?
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That's a really good question Barbara, I'm not sure but I'll add it to my list of questions and post the reply, I dont see why they couldn't implant more than one patient, i suppose it depends on the volume of cells required for the transplant.
 
Which begs the question, err, so how many islet cells does yer avge human bean have?
 
trophywench said:
Which begs the question, err, so how many islet cells does yer avge human bean have?
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And can they replicate within the recipient's body provided they are protected from the new host's over enthusiastic immune system?
 
trophywench said:
Which begs the question, err, so how many islet cells does yer avge human bean have?
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Another good one Jenny, according to Google (so it must be right) the average human has 3.2 million in their pancreas
 
rebrascora said:
And can they replicate within the recipient's body provided they are protected from the new host's over enthusiastic immune system?
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That's the big question Barbara, the big decision I will need to make is the transplant worth the long term side affects from the immunosuppressant drugs I will need to take for the rest of my life to stop rejections of the cells after the implant is done. I'll need a lot more information to be able to make that decision and that is what the first meeting will be about but so far the team there are more than brutally honest about the whole procedure, lots of info is coming my way in the next few months, at the minute its a bit slow because they want to deliver the info in English
 
Do or will you get the opportunity to speak to people who have received transplants to get practical feedback.... Nothing like talking to peers about such things. Really quite fascinating though and look forward to you sharing whatever info you get if you don't mind.... Maybe starting another thread mon the subject would be a good idea or perhaps @everydayupsanddowns might split this one into a thread of it's own about islet transplants.
 
Wow! That is really interesting @Inka Thanks for posting but definitely not for me.... at least not at the moment as I have pretty good hypo awareness. I would imagine that the likes of Libre 2 and looping will mean there are progressively less and less people needing such a procedure these days.
Amazing that they transplant the islets into the liver and not the pancreas and that you will likely still need insulin afterwards, but just a reduced amount.... and still need to take anti rejection medication for the rest of your life. You would have to be having some pretty debilitating/life threatening hypos to warrant going for such a procedure I would have thought. Also surprising that people are referred to the transplant unit before their HCPs have explored the other options like education (DAFNE etc) and pumps. You would have thought that those things would automatically be considered long before a transplant but it does say somewhere in that link you posted that 80% of patients referred to the transplant units are resolved by these other means rather than transplant which makes you wonder what the diabetes clinics are playing at.... surely they should be sorting those things out before people get referred higher up.... Just my thoughts!
 
In Germany Barbara we are not referred by any one, we chose our own doctors and clinics we would like to work with and the treatment you would like to have, we don’t have to jump through hoops to get prescriptions for a libre or a pump and depending where you live and the personal preference of a “consultant” or the policy of your local health trust to get what we need. It’s something I don’t miss from living in the UK, I have full control of the path of my treatment and more importantly who treats me. I recently changed my consultant because I heard good things about him and as he is also T1 he will understand the situation living with this disease, he suggested I look into this treatment and connected me with the professor leading this research in the clinic I will go to. I’m far from making a decision to do it but after 40 odd years of this disease and progressively worsening hypo awareness, (the better I keep in target the worse my awareness becomes) I thought I would look at it as an option.
current pump and CGM tech is not fitting in my life especially at work, I can’t pay attention to the demands of the calibrations etc etc, I have some good connections with reps from several pump manufacturers and they all say the „loop“ systems are around the corner but when pressed none of them will suggest a realistic date, Yposo is very popular here and they have something coming with dexcom but they say earliest is end of 2023 so we are a Long way off yet and to be honest maybe 2025 may be a more accurate estimate based on so many „next big thing promises“ over the years.
I will be doing my due diligence on the transplant route before deciding and I’m now in a lucky situation that I can sit in front or the professionals who are working on this kind of treatment, when I lived in the UK I couldn’t imagine being in such a position.
Sorry for the long rant, I didn’t realise how much I had written, I really will try to document my journey and share the info and decision making progress and I do welcome everyone’s comments.
 
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