To Karyn re TP/ICT

[Guest guest]

Hi Karyn,

I have HP. The TP was discussed last year (on diagnosis of

HP/CP....after 53 years of the disease, I might add!) partly because

of the risks linked with HP, partly because I was having a lot of

severe pain. The Royal Liverpool Hospital has one of the country's

leading specialist pancreatic units led by Professor Neoptolemos.

However, ICT is not done here although it has been done at

Leicester, for example. Prof told me that I would be highly unlikely

to have sufficient islet cells anyway as my pancreas is in such an

advanced stage of CP. It is atrophied and badly calcified. I have

pre-diabetes and am expected to be diabetic very soon.... " could be

at any minute " is how both my gastro and Prof N. put it. But that

was a year ago! I suppose if I were already diabetic I would have

fewer doubts about the TP because I would feel I had less to lose,

as it were. As it is, I have had at least one more year without

diabetes. If I proceed quickly to diabetes now, I may well

reconsider the position.

I did respond well to Creon and the low fat diet etc. I am managing

the condition better now than I was this time last year. I was about

to hand in my notice, for example, but have been able, for the

moment anyway, to continue working although I do have bad days and

bad hours on " good " days. This is essentially why the surgery has

been shelved, at least for the moment.

I am now registered in the current research programme at Liverpool

to monitor closely for changes in the pancreas including possible

malignancy. In addition to the current monitoring methods (CT scan,

EUS, ERCP etc. and C19.9 blood test) they are looking at aspirating

pancreatic juices for analysis and doing cell brushings for similar

analysis. Dr Whitcomb and Dr Brentnall in the US have

done similar things, I understand. Probably others have as well, but

these are the ones I know about. I found out about Dr Brentnall's

work by just doing a search on her name, as advised by the

coordinator of the Europac project here in Liverpool. (Europac has

been studying European families with HP and has just published a

detailed report of their findings over the last six years. Liverpool

has coordinated this programme.)

Well, I've rambled on a bit, Karyn, and gone beyond your question,

but there you are! If I can answer any more questions, please fire

away!

You can find details of the research programme on the Liverpool site

which is at:

www.liv.ac.uk/surgery/europac.html

With very good wishes,

Fliss (UK)

[Guest guest]

Fliss,

You wrote, " Prof told me that I would be highly unlikely to have

sufficient islet cells anyway as my pancreas is in such an

advanced stage of CP. It is atrophied and badly calcified. I have

pre-diabetes and am expected to be diabetic very soon.... "

I had forgotten that you have HP. I just remembered that you were

not diabetic, but with pre-diabetic blood work indicators, that is a

different situation. You had mentioned EuroPac. I am familiar with

their HP research studies as I encountered the group shortly after

as I was diagnosed.

Karyn E. , RN

Executive Director, PAI

http://www.pancassociation.org

Pancreatitis Association International