Re: To Fliss - Questions about Brittle Diabetes and risks of Pancreatic Cancer

[Guest guest]

> Hi Tull,

> I was really interested in your last post about TP without auto

> islet cell transplant. ....

> I was wondering whether the degree of " brittleness " depended on

> whether or not one was already diabetic before the surgery

Hi Fliss,

Both Dr. Sutherland, and also the Diabetic Educator who gave a

separate presentation at the symposium, stressed the fact that " true "

brittle diabetics are a pretty rare phenomenon. There is a small

percentage of the population whose bodies seem to " over-react " to

relatively small changes in " routine " - e.g. the exact amount of

carbs consumed at meals, the exact time each day meals are consumed,

slight changes in daily activity (exercise), stress levels, etc. But

for the vast majority of diabetics who experience wildly fluctuating

blood glucose levels on a routine basis, usually there is something

about the way they are managing their diabetes that can be modified

to greatly alleviate that response. There are now newer forms of

long-acting insulin that are much less variable in the rates at which

they are absorbed (for example, Lantus varies by less than 3%, while

things like NPH have been shown to vary by as much as 25%!).

Rotating the injection site is very important. Some patients develop

a " comfort zone " - one small area where they get comfortable giving

themselves insulin injections, and use that same exact area over and

over for years. Eventually, scar tissue builds up, and causes the

insulin not be absorbed as efficiently every time. THere are lots

of other reasons that blood glucose levels vary in some patients -

but in the majority of cases, with the help of a trained diabetic

educator, the reasons can be found, and the appropriate " life style "

changes made to get it under control. Here are 2 links to some

helpful articles that talk about " brittle diabetes " .

http://www.nfb.org/vod/vsum9906.htm

http://www.therasense.com/educator/questions/pattern_3.htm

Patients who are diabetic BEFORE undergoing a pancreatectomy tend to

experience SAME level of control of their blood sugars AFTER the

pancreatectomy, so actually, it's easier to predict their ability to

control their diabetes than it is for patients who are not diabetic

to begin with. If they were " normal diabetics " prior to the surgery,

they will most likely continue to be " normal diabetics " after the

surgery.

Patients who have never been diabetic have no experience/track record

with controling their blood sugars " manually " (through testing,

insulin injections, etc). There's a LOT to learn about how to do

that well and consistently, and that learning curve is actually the

larger predictor in how well patients do managing diabetes.

The other factor that happens with pancreatectomy patients that plays

a role in controlling diabetes is that now they MUST remember to

ALWAYS take their digestive enzymes everytime they put anything into

their mouth. Otherwise, the body will not be able to absorb the

carbs consumed, and the insulin taken to " balance " those carbs will

turn out to be too much, resulting in low blood sugar, etc.

Balancing the number and " type " of enzymes (enteric coated? non-

enteric coated? 3 capsules? 6 capsules? etc, etc) is also not

an " exact science " , and it takes some time for patients to figure all

that out as well.

But that is the main reason why it makes SO much sense to do the

Islet Cell Transfer WITH the pancreatectomy if you are not already a

diabetic, since that would (hopefully) make the whole question of how

difficult it will be to control diabetes " moot " . Diabetes is a very

serious condition, and if there is anyway to avoid having to deal

with its complications, all possible steps should be taken to do so.

I understand that this procedure may not be available in your area of

the UK right now, but I would at least try pursuing that option. Dr.

Sutherland travels all over the world talking about this, mostly at

various medical conventions, and the ideas/procedures/techniques he

has been developing over the past 30 years or so are beginning to

gain more acceptance in more and more medical institutions around the

world. You might try e-mailing him directly to see if he knows of

any " pilot programs " in England that would be able to do the " islet

cell harvesting " for you. It's always possible that he may know of

such a program that is underway, or maybe something similar is being

planned, somewhere in your area. Dr. Sutherland is very responsive

to answering patients questions directly, even through e-mail.

That being said, once patients have gotten some experience with

managing their diabetes, if they truly cannot control it with

more " conventional " means (including the new insulin pumps, etc), the

other option is to eventually have a full pancreas transplant, or

possibly an allo (donor) islet cell transplant. The trade-off there

is the need to go on anti-rejection drugs (immune system

supressors). Dr. Sutherland says he has some patients who elect to

do that even though they are fairly successful in controling their

diabetes through conventional means, just because they want to be

free of having to do 8-10 needle sticks a day (insulin injections and

testing blood sugars), and the trade-off is worth it to them. And he

says they do well, the new anti-rejection drugs have far fewer side

effects than the earlier ones did, etc. The anti-rejection drugs are

expensive, but compared to the diabetic supplies, the " yearly

maintenance " costs come out about the same.

> My main reason for contemplating the operation is to prevent the

> possibility of pancreatic cancer as I am in a very high risk group.

> (I have lifelong hereditary pancreatitis and am now 57.) Did Dr

> Sutherland mention anything about this?

I don't remember any direct discussion about that at the Symposium.

The only published studies I've ever seen about " cancer risks " for

patients with pancreatitis seemed to indicate that it wasn't much

higher than that of the general population. The number one risk

factors are family history of pancreatic cancer (but not necessarily

just familial pancreatitis), smoking, and alcohol. Again, I'm sure

that if you e-mailed Dr. SUtherland and asked him about that, he

would be glad to share his own experience/thoughts about this.

It's a tough decision, with life-altering consequences no matter

which way you go. For most folks, it comes down to a " quality of

life " issue. That's why it's important to be as well informed, and

get as much information as possible, do as much research as you can,

to help you make the right choice for you.

Cheers,

--Tull

Assistant Moderator

Pancreatitis Association, Int'l

Note: All comments and advice are personal opinion only, and should

not be should be substituted for a professional medical consultation.