Raising awareness of Pancreatic Cancer

[martindt1606]

ink off paper or golf ball off blancmange

I had a neoendocrine tumour and the initial plan was to pluck if off the pancreas as if it was a golf ball sat on blancmange - I don't think they planned on using a sandwedge 🙂.

However if the "golfball" was embedded or stuck so that removing it damaged the pancreas surface then the pancreas was lost as (to continue the analogy) you cannou sew up blancmange.

As I was lying in hospital on the day of the op one of the surgeons juniors came to tell they were taking the pancreas.

 

[Copepod]

Just wanted to say how much I enjoyed your analogy, Martin, even golf and blancmange are among the few activites and foods that I don't like! 🙂

 

[pottersusan]

I had a neoendocrine tumour and the initial plan was to pluck if off the pancreas as if it was a golf ball sat on blancmange - I don't think they planned on using a sandwedge 🙂.

However if the "golfball" was embedded or stuck so that removing it damaged the pancreas surface then the pancreas was lost as (to continue the analogy) you cannou sew up blancmange.

As I was lying in hospital on the day of the op one of the surgeons juniors came to tell they were taking the pancreas.

To continue analogies: my neuroendocrine tumour was the size of a rugby ball and weighed in at 5kg! 😱 I don't know how I found room for it!
the silver lining in my case is that (ladies will appreciate this more!) that I can now wear size 12 trousers, which I've never been able to wear in my adult life. 'Though I wouldn't recommend a malignant tumour as a weight loss strategy. 🙄

all this info is fascinating and useful.

I'm interested in your talking about different sorts of hypos - as you know I'm very new to all this, but it tallies with what I'm feeling.
Martindt1606 - I'm getting similar things, yet am told by the consultant (any faith I had is fast disappearing) you're only hypo below 4. I can feel really about 6/7 and fine at 3.
It's strange, I've been describing my diabetes as type 1 with bells on - and Adrienne uses the same description.

I spoke to diabetes uk to see if they could give me advice and was really surprised when the reaction was 'you're a bit specialist, you need to talk to your consultant'. Very calmly, I suggested to them that, what my surgeon calls Type 3, is becoming more common and perhaps they ought to find out more to help people, like Martin, Jessica and me.

 

[schmeezle]

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.

I remember being told by my NP/CDE the liver's unable to issue glucose if there's insulin still working (we didn't delve into details of how much insulin). Would this help explain some of the "not always" times?

Hi Susan, For your reasearch.....as far as cgm usage goes, I've had one for about a year and love it. After working thru several months of learning curve to be comfortable w/SG (sensor glucose) numbers.....I lean on it heavily for daily decisions. Here to help save you some learning curve if you get one.

 

[pottersusan]

Sounds good to me. Meanwhile I'll keep testing up to 10/12 times daily so that the consultant can see the evidence. I feel like a pin cushion, but it provides entertainment for my family at this festive season! (I'm not going to hold my breath while waiting for a pump etc!)

 

[Northerner]

Sounds good to me. Meanwhile I'll keep testing up to 10/12 times daily so that the consultant can see the evidence. I feel like a pin cushion, but it provides entertainment for my family at this festive season! (I'm not going to hold my breath while waiting for a pump etc!)

'Pin the lancet on the Susan' - wonder if it'll catch on as a party game? 😉

 

[pottersusan]

I give up! My blood sugar is 6.8 and I'm very definitely hypo - the shakes, cold sweat.

I don't understand!

 

[robert@fm]

I give up! My blood sugar is 6.8 and I'm very definitely hypo - the shakes, cold sweat.

I don't understand!

That would be a "phantom hypo" -- most of us who have a long run of high readings get them; one's body gets used to the high readings and regards them as "normal", so when a normal reading comes along it's misinterpreted as "low". 😱

The only answer is to bring your readings down (OK, not so easy in your case, from what you've been telling us) so as to (in time) reset your body's "alarm threshholds".

 

[Northerner]

I give up! My blood sugar is 6.8 and I'm very definitely hypo - the shakes, cold sweat.

I don't understand!

I agree with Robert - sounds like a phantom hypo, but the symptoms are very real. As long as your levels are above 4.0 you are safe from danger, but your brain doesn't understand that your levels are fine, it just sees them as lower than it is used to. A small biscuit will normally ease the symptoms, or equivalent small amount of fast-acting carbs. 🙂

 

[Robster65]

Just to add that it's always best to wash your hands and retest, just in case it was an error and you really are heading below 4.🙂

Rob

 

[pottersusan]

Did wash my hands and retest. Why don't the 'experts' tell you about phantom hypos?!

15.2 when I went to bed last night, 5.4 on waking this morning - where did all that sugar go? I usually have a sandwich and glass of milk when I go to bed 'cos the blood sugar drops over night, but didn't last night 'cos it was so high.

Why does my blood sugar drop so much overnight? I understand with you 'normal' diabetics that the bs you go to bed with is within a small range the bs you wake with. This is certainly not the case for me! (I do specialise in being different!)

I'm trying really hard to bring my readings down. Presumably my body will get used to this in time.

Merry Christmas everyone

 

[Northerner]

Did wash my hands and retest. Why don't the 'experts' tell you about phantom hypos?!

15.2 when I went to bed last night, 5.4 on waking this morning - where did all that sugar go? I usually have a sandwich and glass of milk when I go to bed 'cos the blood sugar drops over night, but didn't last night 'cos it was so high.

Why does my blood sugar drop so much overnight? I understand with you 'normal' diabetics that the bs you go to bed with is within a small range the bs you wake with. This is certainly not the case for me! (I do specialise in being different!)

I'm trying really hard to bring my readings down. Presumably my body will get used to this in time.

Merry Christmas everyone

Susan, it sounds like your lantus dose may be too high and this is why you are dropping so much overnight. It's quite an art fine-tuning the background/basal insulin like lantus so that you can go to bed and wake up at similar levels without much fluctuation. I think you need to speak to your consultant/DSN about adjusting the dose. 🙂

A very Merry Christmas to you too! 🙂

 

[pottersusan]

I've reduced my lantus slightly and am now 'losing' less sugar overnight. It will be a very good thing if I don't have to eat Cadburys chocolate eclairs in the middle of the night. I dropped one a couple of nights ago and didn't want to put on the light to search for it. In the morning I was welded to my sheet with it!

I have asked my GP to refer me to a different consultant (who is not past his sell by date) as I'm seriously not happy with the care being received. I'm now managing my diabetes on a 'need to eat, therefore need insulin' basis, which is working pretty well considering. 🙂 Thanks to you people out there who are so knowledgeable and willing to share that knowledge.

Have just had my 2nd Christmas dinner as one of my multitude of meals/snacks. It still tasted as good as first time. With the many meals I have in a day, and the need to take Creon (pancreatic enzymes) every time I eat, I'm considering changing my user name to 'Creon Queen'.

 

[Northerner]

Sounds like you are doing well Susan - hope you can get to see a (much) better consultant soon! 🙂

 

[trophywench]

I haven't contributed to this thread at all - anything I know the answer to has already been answered by someone else anyway.

However I would like to say I'm finding it quite riveting, Susan!

It's not a subject we have ever talked about in this house - my hubby's dad died of pancreatic cancer nearly 40 years ago (before I knew hubby) and of course he doesn't know any of the ins and outs of it - even if the medics did at the time.

I never understood why they didn't just whip the whole thing out and say OK you are diabetic now, insulin jabs for the rest of your days - but he would have been alive. I think it's utterly wonderful that things CAN be done now.

Susan, I think it's most unfair of your medics (except your GP) to sort of walk away and leave you to it; OK so yes you will have to manage it yourself on an ongoing basis because it will be more unpredictable I expect - but at least if you feel your team are with you in this and not just disinterested onlookers - so you have an expert support network - I'm sure it will help!

Good luck with your new consultant etc.

 

[pottersusan]

From what I can make out, removing the pancreas totally is fairly new and unusual (more so than I realised at first). The problem with my current consultant is that he's used to a nice neat little diabetic box and then I come along and he wants to fit me in there, but however hard he tries I don't fit - there are always some limbs that won't fit to say nothing of the screaming.! I think he'll be glad to see the back of me (if he told the truth) so he can go on quietly to retirement.
I'm collecting lots of data about my diabetes (I'm the local diabetic bore at the moment!) to prove how wacky my diabetes is. My brother was looking at all this and has come to the conclusion that there is absolutely no pattern in what's happening to me. When I go home next week, I'm going to try eating the same thing at the same time every day and see if the same thing happens. It will be rather boring, but might prove a point.
Ah well, better go and eat another mince pie. I know I shouldn't 'cos I'm diabetic, but I need the calories! 🙂

 

[FM001]

Read a quote in a newspaper last week referring to cancer and they said it was the ''work of the devil'' - who could argue

 

[Adrienne]

From what I can make out, removing the pancreas totally is fairly new and unusual (more so than I realised at first). The problem with my current consultant is that he's used to a nice neat little diabetic box and then I come along and he wants to fit me in there, but however hard he tries I don't fit - there are always some limbs that won't fit to say nothing of the screaming.! I think he'll be glad to see the back of me (if he told the truth) so he can go on quietly to retirement.
I'm collecting lots of data about my diabetes (I'm the local diabetic bore at the moment!) to prove how wacky my diabetes is. My brother was looking at all this and has come to the conclusion that there is absolutely no pattern in what's happening to me. When I go home next week, I'm going to try eating the same thing at the same time every day and see if the same thing happens. It will be rather boring, but might prove a point.
Ah well, better go and eat another mince pie. I know I shouldn't 'cos I'm diabetic, but I need the calories! 🙂

Removal of the pancreas - I only know about these things due to CHI and how it has evolved over the years. When Jessica was born almost 13 years ago (she will be 12 in April) we were under the almight Prof S, a surgeon at GOSH, he was renowned world wide (and was in TV) for separating conjoined twins. He also did the pancreas removals or part of for the CHI babies. He was a marvellous man. Back then it was a full on operation. If the bad bit of the pancreas was in the head then they had to start at the tail and remove the tail, body and head, there was not getting around this otherwise the tail and body would not be joined to anything.

Well they now have another surgeon at GOSH, Prof P, who is also blooming marvellous. He was the first surgeon world wide to perform a pancreatectomy on a baby using keyhole surgery. This is all within the last oooo maybe 6 or 7 years only. If the bad bit, or focal lesion is in the head, he can now remove just the head and reattach the body and tail back on. It is amazing.

I don't know about pancreatic cancer but I do know about removing one with CHI. With cancer would it mean the whole lot removed or do they do a PET scan and find where the cancer would be in the pancreas.

They use PET scanners for the CHI babies (another procedure founded by GOSH and Jessica's team before the rest of the world) and use the ISOTOPE to see whether the pancreas is all bad or just parts or part. These are very clever people and I'm in total awe of them and its an honour to know them and very well. 🙂

 

[MeanMom]

Hi

With my Dad's pancreatic cancer last year they said it was completely untreatable, I don't know why, may have been because it had progressed so far, may be because they thought he was too old/weak(he had a umbrella in his heart) or possibly because they thought it was a secondary cancer and they couldn't find the primary cancer? We could have found out more with an autopsy but we as a family didn't want to go through it at the time - knowing more wouldn't have brought him back...

With hindsight, and especially with K's subsequent diagnosis with diabetes, would have liked to know it bit more but we had to have autopsy for FIL and it was horrible having to do that to him, so glad didn't for my Dad really.

Sorry for 'grim' post - but just wanted to underline point that removal of pancreas IS rare- so glad for you Susan that it was possible for you, even if you are having 'just a few' 😉 problems.