Raising awareness of Pancreatic Cancer

[pottersusan]

It's a Continuous Glucose Monitoring System - you wear it all the time and it takes a reading every 5 minutes or so (it uses the interstitial fluid rather than blood). Here's a popular example:

http://www.dexcom.com/seven-plus

🙂

Thats a really neat piece of kit. Hopefully, in time, the cgm could tell the pump when you need more insulin.

My shopping list to get from the consultant is growing! I suspect 'old school' doctors hate the internet!!

 

[pottersusan]

That sounds like an excellent idea Susan 🙂 And you've cleared up the mystery of your choice of user name!

There is some method in my madness (though some people might question that!) 😉

 

[Northerner]

Thats a really neat piece of kit. Hopefully, in time, the cgm could tell the pump when you need more insulin.

My shopping list to get from the consultant is growing! I suspect 'old school' doctors hate the internet!!

Connecting the two together is what is known as the 'artificial pancreas' - it is actually being tested at the moment!

http://www.jdrf.org.uk/page.asp?section=174

🙂

I'm sure we keep a lot of doctors on their toes! 🙂

 

[pottersusan]

I agree (though I am ever so slightly biased!) and was talking to my GP today. He said my consultant is a very good diabetician, but... And it's that but I'm not too happy with. I suspect I'm going to be seeing a more open minded person after the festive season.
My GP thinks I pose an interesting challenge, which he relishes - but not everyone wants one of those.

 

[pottersusan]

I think I'll get my name at the top of the list for one of those! 🙂

 

[pottersusan]

I suspect your team are so focussed on your P.C. and the infection risks, etc that to them, your diabetes is secondary. Obviously to you, it's your life. So go ahead and bully them into finding yousomeone who knows as much as we do and then bully them into giving you what you need.

I'm sure it will be a battle all the way, but it's the what you need. Not just a whim.🙂

Rob

I am cancer free at the moment (yippee 🙂) and recovering well from the op. A month ago I was struggling to cope with everything - eating, diabetes, taking all the pills... But now I feel much better, and am prepared to take on the NHS . I worked for the NHS (the local PCT and then the local hospital, which is in the financial sh*t) for 6.5 years (and lived to tell the tale, but am still taking the tablets!), so I have a lot of contacts who can tell me who I need to hassle, to make things happen.

The local hospital has spent a lot of time on the front page of the local paper lately. Is it the PCT who funds things like pumps and cgms? Perhaps they should be on the front page so they don't feel left out. I can see some headlines about an uncaring NHS... (to a poor 'old' NHS pensioner - I threw in the towel early as I couldn't stand it any more!)

 

[margie]

What meter do you have ?

You sound happy using excel but most meters have free software (available from the manufacturers) that will produce all kinds of graphs and charts.

If you haven't done so register your meter with its makers, certainly Abbotts will replace a meter that is not working, replace the battery and supply test solutions for no charge. I suspect that other manufacturers do the same.

 

[pottersusan]

What meter do you have ?

You sound happy using excel but most meters have free software (available from the manufacturers) that will produce all kinds of graphs and charts.

If you haven't done so register your meter with its makers, certainly Abbotts will replace a meter that is not working, replace the battery and supply test solutions for no charge. I suspect that other manufacturers do the same.

Aviva Nano Accu-Check. What a sensible idea. I'm so busy remembering to eat, there's little room in my brain for anything else. All the more reason I think to have things done for me automatically. You'd be surprised how hard it is making yourself eat so frequently, when you never feel hungry anymore.

 

[Northerner]

Aviva Nano Accu-Check. What a sensible idea. I'm so busy remembering to eat, there's little room in my brain for anything else. All the more reason I think to have things done for me automatically. You'd be surprised how hard it is making yourself eat so frequently, when you never feel hungry anymore.

Accu-Chek have free software called Accuchek 360 - give them a ring and they'll send it to you free of charge 🙂 It uses a USB infrared receiver (supplied) to read the meter.

 

[Robster65]

They do like to charge for the IR interface but if you play them a bit, they'll let you have one. Tell them you know if 2 T1s at least who got it for free !

I think every PCT is obliged by law to fund a pump if your consultant recommends one. Don't know about the CGMS but a pump alone will make your life a million times simpler.

Rob

 

[martindt1606]

Use of a CGM

Hi Susan,

I wore a CGM for seven days and the results just added even more confusion into the blood glucose : carbs : insulin : exercise : stress.... relationship.

I ended up with seven 24 hour graphs with no common or recurring pattern. For example 2 hours after eating the CGM showed that my BS could be above, below, or the same as the pre meal reading. At breakfast where I ate the same thing on each of the 7 days - no 2 days movements were the same and the range between highest and lowest BS's movements post meal was almost 10.

Of course you could always blame human error - incorrect carb count, incorrect carb to insulin ratio, incorrect exercise adjustment....

The diabetic nurse hadn't seen results like it before - but there again she'd never dealt with anyone without a pancreas.

 

[Adrienne]

Does your liver's glucose output know what to do without a pancreas ?

I wonder if it's that side of things that makes it a bit up and down ?

I'm still not sure myself what functions remain intact and what dies off with the beta cells, so to lose the whole shebang must be really confusing.

Rob

Hiya

I've only just seen this entire thread. However Susan and I are in contact now.

As for this question. No the liver has no idea what to do which is why Jessica (and Susan) are more susceptible to hypos.

When a 'normal' diabetic's (forgive the word normal, not meant as derogatory at all) body is having a hypo, then sometimes (not always) the pancreas will chat to the liver and the liver kicks out a bit of magic stuff and the hypo will happen slower or not happen at all. However with Jessica the liver has no-one to chat to so nothing is kicked out and 'bang' we have a hypo without warning.

But some kiddies who have their pancreas removed due to CHI (Congenital Hyperinsulinism) still need a dextrose drip which is odd. It has been found there are some who have pancreatic cells hidden in other parts of the body. Fascinating eh.

 

[Robster65]

Thanks adrienne. Hence the urgent need for all people with no pancreas to be offered cgm and pump, especially Susan.

Rob

 

[pottersusan]

It is so good communicating with people who understand!

No one has spoken about what my liver is or isn't doing. I'm going to enjoy my next consultant appointment!

I really appreciate the help and support you people are giving me - it's invaluable. 🙂

 

[Northerner]

It is so good communicating with people who understand!

No one has spoken about what my liver is or isn't doing. I'm going to enjoy my next consultant appointment!

I really appreciate the help and support you people are giving me - it's invaluable. 🙂

The pancreas has two hormone functions (to my knowledge) as far as blood glucose control is concerned. The beta cells produce insulin which lowers BG levels, and are what get destroyed by the immune system in Type 1 diabetes. The alpha cells produce glucagon which stimulates the liver to release its stores of glucose and therefore raise BG levels. If you don't have a pancreas then you're not producing either

Also, I think that in an islet cell transplant (the islets are the Islets of Langerhans that contain the alpha and beta cells in the pancreas), the cells are transplanted into the liver where they can work to produce insulin (and presumably glucagon). Not sure if this would be an option for you Susan, although it would probably involve anti-rejection drugs (they are working on ways of removing the need for AR drugs).

 

[Robster65]

You get the impression that they're seeing you as an interesting biological sample, rather than a person who has to go away and try to live a fulfilling life in between appointments.

I would sound off quite loudly at them and present a list of needs, desires and criticisms so they know where they're failing you and what will happen to them (letter to PCT, newspaper, NHS watchdog) if they don't deliver on at least the basics.

Get fired up and sharpen those teeth. You may not be able to digest them, but you can still bite their heads off !!

Rob

 

[Adrienne]

Hiya

In theory you are not a 'normal' run of the mill person with diabetes. Therefore you cannot come under the Type 1 NICE guidelines. There may be no guidelines for your condition as such (you could google that). So that means they can through the rule book away and get you a pump and also integrated CGM. For you I cannot recommend the Medtronic VEO with integrated CGM enough. It is the low suspend feature that you will need and that is with no other pump. I think I put all that in the email to you, sorry brain like mush, not much sleep here last night.

Go for it in a big way. If your team does not do pumps then find another hospital that does and move there under patient choice.

Good luck

 

[martindt1606]

I would agree that as we do not have a Pancreas we are not categorised as normal under the NICE Guidelines.

We are also not normal when it comes to DAFNE. I only succeeded on getting a place on a course at the 3rd attempt (and one of the courses I was refused access to ran with only 5 people....) and only if I promised not to mention the missing pancreas. Having done the course I can appreciate why there was resistance from the DAFNE team as it does rely on the shared experience - however during the week of the course my body did react as a normal Type 1 except on one occaision.

And that ties back to the comments on the role of the liver. One evening on leaving the course I had what I think I'll now call a liver(hy)po-ol. It basically was the same as the one I'm just recovering from:

12:15 feel sick, loss of concentration, strange feeling in arms - test blood 3.7
- take 1.6 CP of GlucoGel (yukkk!!!)

12:30 not feeling any better Accu-Check Aviva Expert Alarm reminds me to retest - blood now 3.1 (aaaaaarrgghhhh) - drink a carton of orange juice

12:45 starting to feel better when alarm goes off - blood now 6.3 (hooray)
Enter carb points for lunch into accu check (6.9) and am advised to
take 7 units of NovoRapid. This seems a little high given the hypo issue
so only inject 6. Hope to be just above 5.5 at 16:30 for the drive home.

Note on at least 3 occaisions in the last 6 months the second round of fast acting carbs has only held the blood sugar constant and its taken another round of fast acting to get back up.

Just to add additional complexity I can fall to 3.1 and still feel perfectly normal. For this type of hypo, 2 CP of fast acting carbs will take me back to normality.

I suppose the good news is that as I wasn't in at the end of the meeting I wasn't allocated any actions🙂

 

[Northerner]

I don't think you are alone in feeling hypos differently on different occasions Martin. Some hypos, when the levels are falling quickly, show more symptoms and may continue to fall even after been given a normal treatment, even though when you take a reading you might only be just in the hypo range. Others, where there is a more gradual fall, may show a reading much lower when symptoms are felt because the decline has not been as rapid.

I wrote this poem about the different types of hypo, and how we ought to have different words to describe them instead of lumping them all into one term 🙂

http://diabetespoetry.blogspot.com/2009/08/thirty-words-for-snow.html

 

[Adrienne]

Hi

I describe my daughter as having type 1 with bells on as there are added extras ie the pancreatic enzymes and the lack of help from the liver.

Jessica does have around 2-5% of her pancreas left, the bit stuck fast to the bile duct. It's a bit like scraping ink off paper apparently to remove that bit.

That bit of pancreas hasn't burnt out. We want it to though. Jessica didn't have pancreatic cancer. She has congenital hyperinsulinism which basically means her pancreas gates were permanently open letting insulin free flow.

We are on a train on our way to gt ormond st now to see the gastro team today. Jessica has had chest pains since 2 yrs old. It's all connected somehow.

Just seen the new Shard at London bridge. It's still not finished but massive.