Morning everyone, any insights gratefully received!

Hello FurryMum

I'm sorry to hear your news. 

My experience is that use of Creon is little understood, even by medical professionals. My understanding is that you cannot take too much Creon. It helps you digest some foods and the Creon that isn't needed simply passes through into the bowel.

The hospital should be able to help with the sickness and diarrhoea so be a bit persistent in asking them to try to do this.

Unfortunately, pancreatic cancer has many and varied symptoms.

Squeaky

Thanks - it’s all so new to me so I’ll def need to research for her a bit more. The hospital have been great but the whole cancer language is scary, I do wish they’d wait until she wasn’t alone to talk about some things - they mentioned bringing a specialist nurse in from the hospice to talk to her and it’s frightened her so much x

Hello

Yes, it's rather annoying when the patient is spoken to alone.

Perhaps regarding the hospice nurse what they said was that the nurse would discuss pain management. Hospice nurses are experts on pain management but it is scary when hospice is mentioned.

Squeaky

After 2 months of trying to establish a diagnosis, I was told that I had stage 4 pancreatic Cancer in December. I am approaching next week, the 12th round of chemotherapy. I heard from the team at RMH Chelsea about Creon around cycle 4 or 5 and submitted a stool sample but there was never any follow up. An extended bout of diarrhoea, I went to A&E and the consultant was surprised that I had not received Creon.

He prescribed it and it has been transformative and changed, for the better, my bowel movements and stool. I did meet with the nutritionist atRMH and confirm what you said about no limit to the number per day. Currently I am taking on average around 6-8 per day.

In parallel my appetite and taste have returned so the Creon is being tested in an increased volume of food and works fine. My understanding is that for fatty foods, Creon aids digestion. It certainly helps me and I have wondered if I might have avoided so much weight loss had I started taking it earlier in the treatment cycle.

Hi This is appalling.The standard at the RMH has dropped massively over the past 3-6 months.It is all to do with the roll out of a new IT system, also impacted  by strikes.So You should have had Creon from the get go! Make a complaint  to PALS.....You are lucky you are getting your chemotherapy, the new system blocks the booking of sessions until a doctor signs off, then he/she signs off, but whoops all the chemo sessions are booked for the following week.I witnessed a poor woman in a total  state of distress, who had not had chemo for 4 weeks.....This is to do with incompetent management and corporate governance.The new system from the patient side, as we discovered, was not compatible with a Google browser......prior to the  roll out of this new system the RMH was excellent...now the lives of our loved ones are at risk!It is not good enough to say we are working through this and improving versus other healthcare trusts...this will cost lives!

I have had my chemotherapy during the IT transition and have not observed anything above minor teething problems with deployment in so far as standards of care at RMH. The Creon story remains a unexplained mystery for the moment but I agree I do need to flag this.

Broadly speaking, my treatment started in January and brought relief from Barratts Oesophagus and significant pain after 3-4 cycles with CA 19 numbers falling from 800+ down to around 150 and subsequently approaching 60 more recently.

I am sorry to hear that the IT changes have had such a negative impact on other patients and I guess I got lucky! I did see some QR code reader issues which were impacting pharmacy but some of the MDU nurses seem to be positive about ease of input of information etc.

very best regards 

Chelsea seems to be better than Sutton.We have experience of both sites and have been between the two for circa 2 1/2 years.The IT system is a major issue and quite shocking to be honest.Feedback from the incredibly good and loyal staff is that they have not had adequate training on the system, nor were most involved in the development and roll out.Can only comment that scheduling and execution of treatment was much better prior to the roll out the new system.....I wish you well and hope that your treatment progresses successfully.I appreciate the Barratts issue, my dear Mother had oesophagal cancer and was treated brilliantly at the RMH and the LOML was getting incredible treatment up until Q2 this year...

Hi FurryMum

So sorry to hear of your mum bless her it must be very difficult.  Why dont you contact Pancreatic Cancer UK they have specialist nurses that deal with this and are sure to help and advise you.  Love and hugs XXXX

my mum had a stent and was discharged 3 days later. She was vomiting a lot during the night for a while after coming home but this stopped completely after a week or so. I suspect it was recovery from the operation. We did have a hospital visit as I was concerned but all was ok. 

In terms of creon experience mum was having diarrhoea a lot and after highlighting this to our specialist nurse she suggested we up them from 2 per meal to 3 and 1 per snack to 2 which has stopped it completely.

You should have been assigned a clinical specialist nurse who you can call to chat with about any concerns. 

I'd suggest maybe jumping on the online chat on macmillan as they are good at advising.

Thanks for the wishes, much appreciated. Having launched a few software applications,albeit to a largely tech audience, your point about early involvement of end users in early stage development is spot on. So called voice of customer databases should be compulsory in such cases and should continue after launch. I have no idea if this was the case here but from what you have said, it doesn’t sound like it.