Search found 103 matches

by suef
Sun Sep 01, 2013 11:40 am
Forum: Treatment & side effects
Topic: Creon enzymes
Replies: 15
Views: 27935

Creon enzymes

My wonderful new consultant reassured me that I am using my enzymes correctly so I want to share this with the group. I currently take 15-20 Creon 25000 a day, though he has advised me to move to Creon 40000 so I don't have to carry so many pills around! The enzymes have to be present in your digest...
by suef
Thu Aug 22, 2013 8:53 pm
Forum: General chat
Topic: Planning Chemo in Prep for Surgery
Replies: 74
Views: 41745

Re: "Borderline" Suitable for Op

Dear Sarah, Congratulations on your superb organisation! So glad the Creon enzymes are working. Just a little note to say that after my Whipple (done in Belgium) the surgeons advised me to stop drinking alcohol completely, except for a mouthful once a year. I believe that British surgeons are less d...
by suef
Thu Aug 22, 2013 9:43 am
Forum: News archive
Topic: APPG on pancreatic cancer inquiry
Replies: 3
Views: 9485

Re: APPG on pancreatic cancer inquiry

Dear KatB,

These audio recordings of the All Party Parliamentary Group on pancreatic cancer are EXCELLENT! Apart from a few coughs, splutters etc, there is really interesting material here - felt like shouting at them sometimes! I have listened to 2, will listen to the others very soon!

SueF
by suef
Thu Aug 22, 2013 9:38 am
Forum: Patient Experience Forum
Topic: Important to have medical support you trust
Replies: 12
Views: 8146

Re: Important to have medical support you trust

Dear Sarah,

Please don't worry at all about 'hijacking my thread'. We are here to offer help and support, no matter what the thread is called! I am so glad you are finding support, please keep in touch and let us know how you are coping.

Love,

SueF
by suef
Tue Aug 20, 2013 8:34 pm
Forum: Family, friends and carers
Topic: What can I feed my mum?
Replies: 3
Views: 2963

Re: What can I feed my mum?

Hello, I had a Whipple 3 years ago, had most of my pancreas, 35% of my stomach, my gall bladder etc removed, and also had problems digesting though I take 15-20 enzyme pills (Creon 25000) daily. I find I am best on small, simple meals like steamed fish, steamed rice, steamed new potatoes, fruit (esp...
by suef
Tue Aug 20, 2013 8:27 pm
Forum: General chat
Topic: Planning Chemo in Prep for Surgery
Replies: 74
Views: 41745

Re: Diagnosed today - Advice needed

Dear Sarah, I am so sorry to read the news about your Mum and wish you much courage for the days and weeks ahead. I am very glad that my post on changing my surgeon was useful and I do urge you to contact the Support Team as they have so much valuable knowledge to share. I also had a stent inserted,...
by suef
Sun Aug 18, 2013 9:27 pm
Forum: Advanced pancreatic cancer
Topic: This is it
Replies: 13
Views: 6454

Re: This is it

Dear Dawn,

I am so sorry to hear your sad news. We will always be here for you.

Much love,

SueF
by suef
Tue Aug 13, 2013 5:37 pm
Forum: Patient Experience Forum
Topic: Important to have medical support you trust
Replies: 12
Views: 8146

Important to have medical support you trust

I had a Whipple in Belgium 3 years ago and have recovered well. When I retired to the UK, I simply went to the nearest specialist centre and was assigned to a consultant. I never got on with him. The first letter he sent to my GP stated that I was taking too many Creon, but I was taking the precise ...
by suef
Tue Jul 09, 2013 3:21 pm
Forum: Treatment & side effects
Topic: Folfirinox and effects
Replies: 38
Views: 33624

Re: Folfirinox and effects

Just a note about Creon, after a Whipple 3 years ago, I take 15-20 capsules every day, of the 25,000 strength, dispersed between meals and snacks. I also recommend Fortisip as meal replacements.

Good luck!

SueF
by suef
Mon Jul 01, 2013 8:12 am
Forum: Treatment & side effects
Topic: Pill boxes
Replies: 0
Views: 6008

Pill boxes

Someone mentioned in a recent post that they had put their pills in a beautiful pill box bought on Ebay. Having had a Whipple 3 years ago, I take 15-20 Creon a day - and have acquired quite a large collection of large pill boxes! It makes a huge difference to be able to produce a beautiful pill box ...
by suef
Tue Jun 04, 2013 5:26 pm
Forum: Patient Experience Forum
Topic: Moving to UK ... need good hospital for follow-up treatment
Replies: 7
Views: 8450

Re: Moving to UK ... need good hospital for follow-up treatment

Just a little note to add to my previous post. Do try to bring several months of prescription medicine with you. The same medicines might not exist in the UK (that was the case for me) and it might take time to 'migrate'. Also, bring a list of your prescriptions on official paper - and bring your me...
by suef
Tue Jun 04, 2013 9:07 am
Forum: Patient Experience Forum
Topic: Moving to UK ... need good hospital for follow-up treatment
Replies: 7
Views: 8450

Re: Moving to UK ... need good hospital for follow-up treatment

I had my Whipple done in Belgium and moved back to the UK 2 years later. I brought back details of my operation and ongoing care from the surgeons and my GP in Belgium, then simply registered with a local GP in the UK. He referred me immediately to the nearest specialist centre. You can find a list ...
by suef
Sat Apr 27, 2013 9:45 pm
Forum: General chat
Topic: Hello & Thank You
Replies: 21
Views: 18162

Re: Hello & Thank You

Hello Rustie22, Welcome to the forum. You will get a lot of support here, as well as practical information. There is a section on the website with lots of questions you can ask at the MDT meeting: http://www.pancreaticcancer.org.uk/information-and-support/just-diagnosed/questions-to-ask I hope they ...
by suef
Wed Apr 10, 2013 7:25 pm
Forum: Family, friends and carers
Topic: Hello from KATB
Replies: 47
Views: 23121

Re: Hello from KATB

Dear Kate,

That's good news, keep positive!

Love,

SueF
by suef
Fri Apr 05, 2013 8:08 pm
Forum: Advanced pancreatic cancer
Topic: Update on my husband
Replies: 24
Views: 14109

Re: Update on my husband

Just to let you know that I had 35% of my stomach removed during my Whipple and at first I could only eat small quantities, but 3 years later I think it has expanded! The other day I had a huge plate of fish & chips - with no harmful effects. It just takes time for your body to heal. Just graze at f...

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