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hi everyone.

Im glad to have joined the forum, it seems very supportive.

I started in october 2010 with stomach pains going into my back...lately having nausea and pains have become constant, worse when eat or lay down.

Ive had a battery of tests at my local hospital.

ultrasound showed dilated ducts

ct scan showed suspected ipmn in main duct

mrcp showed same

plus 2 laporoscopes and finally eus at a neraby town.


after each test result, my local upper gi mdt had a meeting to decide what the likely problem is and then brought me back to tell me . they spent time trying to disprove the tumour in head of pancreas and looking at what else it might be, such as pancreatic divisum,pancreatitis etc.


finally i have been referred to my regional pancreas cancer centre to discuss with pancreas surgeon if operation is worthwhile or necessary. they even suggested waiting till a 'new type' of laporoscope becomes available before seeing surgeon...its called a spyglass.


i know they are being thorough but just want things to move on and get sorted out now.


aparently ipmn is a tuomour in main duct of pancreas, which the local team said 'has potential' to be cancerous.


I see the surgeon next week and am just hopefull things will start to improve soon.


has anyone else had experiences of IPMN please?


kind regards

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hi, we've not experienced ipmn [ dont think so anyway] but my advice would be, knowing how difficult it is to get accurate diagnosis,if you have a team on your case, dont hang around too long waiting for "new" products, let someone,ie upper gi surgeon see you asap, this nasty disease hides itself in so many differant symptoms, as you have already experienced, wishing you all the best, dont be fobbed off! plenty of superb caring people on here to support you, laura

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Hello dmc236,

I'm sorry to hear that you have a suspected IPMN.

After seven years of pancreatitis with no obvious cause, it was discovered I had

an IPMN in the tail of my pancreas.

This was removed along with the distal pancreas and spleen in April 2009.

Unfortunately, after about a year, I developed symptoms again and a new IPMN had developed in the head of my pancreas. This was removed by means of a Whipple's procedure in December 2010. The first IPMN had "low malignant potential" at the time of removal.

The second had a small focus of adenocarcinoma and the surgeon was pleased that he had performed a "curative procedure". I am now one year post-op and managing to deal with the digestive problems and diabetes quite well. I have no pain.

When I was diagnosed I just wanted the IPMN removed as soon as possible.

If you would like to talk to me about this please let me know.

Best Wishes,

Anne

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thank you for replies.

I will see surgeon at regional pancreas cancer centre next week so hopefully he will be able to give me more ideas of what to expect, ie surgery or watch and wait. this is all so new to me and come from nowhere really. it seems like ipmn is a cancer in disguise, but the local doctors in my town wont call it cancer. it has me very worried at the minute though.

thank you Anne, it will be good to talk with someone with same experience.


dmc236

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im hopefull when i meet surgeon he has idea of plan, hoping he doesnt just order even more tests . all the tests are frustrating when nothings actually done in way of treatment yet .

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Hi dmc


Remember early detection is vital and this is your health so demand answers and don't sit back and wait. Don't blame the Doctors but sometimes they just need to be told !


This time last year my wife was having pain in her stomach that went through to her back _ her brother had the same symptoms 4 years earlier , but it was too late for him pc took his life 3 months after being diagnosed at 37. She insisted that her doctor got her pancreas checked , she was told they would do the scan just to settle her mind but that they wer 99% it would be clear.


The scan showed a mass on the head of the pancreas.


So far she has had the whipple procedure ,capceptibine for 3 months ,gemceptibine for 3 months.


Make them listen to you !


All the very best of luck

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saw the regional specialist today and nurse specialist. they were very nice and explanined evertyhing well.


the ipmn apears small and non invasive at the moment

prescribed creon for absorption ad to ease symptoms.

also ordering a 'new' spyglass test which will give better idea of extent etc of ipmn before deciding how much /if any pancreas to remove. test may take couple of weeks but if not available quick enough i will see specialist again in 4 weeks and discuss if creon helped and possible surgery options.



feel a bit more informed at least.

hes also done extra bloods including ca19-9, which hadnt been done by local hospital.

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PCUK Nurse Jeni

Hi dmc,


Good news that things seem to be moving along at last.


Hopefully, the creon will work and help with some of the symptoms.


Best wishes,


Jeni.

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ive been on creon only just over a day, but wanted to share a positive experience on forum. almost immediatley ive noticed i can eat my meals with so much less discomfort, pain and bloating and not feeling full after just two mouthfulls.i can now eat a full meal alongside my family which in itself feels so good and reassures them too.


im interpreting this to mean that the creon is actually helping break down the food now, so am very hopefull that i will soon have more energy instead of feeling like my batteries are drained every day around 5pm!this may also allow me to put some of the weight ive lost back on.


al in all feeling very positive about things at the minute so just wanted to share those feelings with the forum, in case it helps even one person today.


thanks

Dmc

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hi dmc, glad creon is helping my husband takes anything between 8 to 12 a day, depends what he eats, 2 with breakfast [ one after couple mouthfuls, n 1 towrds the end, thats with cereal and fruit] fruit on its own not neccassary, 1 with snack, like biscuits,cake etc, if eating beef always has more as it appears harder to digest/breakdown,i always carry a box in my bag when we go out, also takes domperidone at same time, dont know if it has helped but has not had any nausea throughout treatment, play around with the creon, as you cannot overdose, but you can be too frugal with them, good luck laura x

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thanx laura,

Its is hard to get the dose just right but will play around with it as you suggested. i have domperidone too and use it as and wen i need it. had quite bad morning today beeing sick which it didnt help with, but i think the creon made me constipated so nothing felt to be moving down...hence i vomitted. maybe im wrong, just how it felt though. so i think best advise like you say is play around with creon till its right...and maybe i need to drink more fluids.


dmc236

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Hello dmc,

I used to find with my IPMN that I didn't need Creon all the time.

A pattern developed like this:

1. I would have pain and steatorrhoea which indicated that the mucus produced by the tumour was blocking the main duct and pancreatic enzymes weren't entering the duodenum.

I would take Creon at this time.

2. Pressure built up in the pancreas because of the blocked duct.

3. The pressure forced the mucus out of the duct and pancreatic juice could flow into the duodenum again.

4. I didn't need Creon then so didn't take it.

The pain was at its worst when the pressure was highest.

The pattern repeated itself about every ten days eventually.

You should manage to work out for yourself if and when you need Creon and how much.

Best wishes,

Anne.

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hi again dmc, from what anne says it would appear that maybe your needs are differant to brians. [non operable in head of pancreas, tho whipple was attempted,] we do find that size of meal is much smaller, otherwise he to feels that the food has not "gone down".

so guess you have to find whats good for you, am not aware that creon causes constipation, but hey it might! bri ALWAYS takes domperidone . its worked for him doing it that way.

good luck, let us know how you do, laura x

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PCUK Nurse Jeni

Hi dmc,


Good news about the creon! Well done!


Constipation is not a documented side effect of this medication, and Laura is right, you can't overdose on it.


All the best,


Jeni.

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i seem to be feeling more energised since starting creon, still have some steatthorea but overall i geuss in absorbing more from my food. plus i find im not bloated and in discomfort when eating if i use the creon so thats really positive. just waiting now for this other test to be available, should hear something tommorow or if not available will be talking about whipples i think. wish me luck and thanks for all support it realy helps .

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thank you, i will give it a go.


just heard from specialist nurse, no date for the test yet so she will discuss with surgeon and let me know the plan forward.it seems the equipment isnt available for this new 'spyglass test' which is whats causing the hold up...so we will see where we go from here!

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  • 5 weeks later...

been for review with consultant today...still waiting for spyglass test. says it should be at the end of march.

he#s revised his thinking a little too... he said the surgical option at the moment would be removal of full pancreas and spleen, as dilation is full length of main duct, rather than a whipples. hence the reason to wait for the test to confirm extent of disease visually before going ahead with surgey.

also increased my creon and done further bloods for comparison...ca 19 etc.

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Hi DMC


Wow that's a huge op - it would be fantastic if you can have it. I've never heard of this before, heard of a whipples procedure, but unfortunately for my mum, she had two lymph nodes with cancer in, so surgery was never an option.


Good luck, I hope everything goes really well.


Louie x

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  • 6 months later...

hi everyone. things have changed a lot since my last post. ive had surgery to reduce pain levels but no resections etc. been monitored since then but they now suspect involvment of bile duct and gallbladder so have to have new scans and look at options again.

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PCUK Nurse Jeni

Hi dmc,


Sorry to hear you have had a bit of a roller-coaster since you last posted on here.

I hope that you get your relevant scans and tests done as soon as possible, so that you can be made aware of exactly what is going on. Did they say what they meant by "involvement" of the bile duct/gallbladder?


Keep us posted on what is happening.


KR,


Jeni.

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hi jeni

no they didnt elaborate realy. essentially my pain from pancreas seems to have been masking pain in the are of gallbladder. so after i had the nerves cut with bits procedure, the pain hadnt gone, but weirdly seems to have moved accross to area of gallbladder/liver and bile duct!my original scans etc are nearly a year ago now, and didnt show any stones or dilation of bile duct or gallbladder . they did show dilation of main pancreatic duct with a focal area at ampullary region. so it could be lots of things causing this...not automatically thinking the worse, but have a feeling it could be dilation of cbd as well now.whatever that implies am not sure yet. so have to wait for scans to see. the consultant said it may mean removal of gallbladder or discussing removal/resection of pancreas etc again.

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