A forum specifically for patients only to use (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up).

Moderator: volmod

Support Team
Site Admin
Posts: 120
Joined: Fri Sep 23, 2005 3:50 pm

Welcome to this new sub forum

Postby Support Team » Thu Nov 01, 2012 12:10 pm

Welcome to this new sub forum. We hope this will be a forum specifically for ‘patients only’ (e.g. newly diagnosed, recovering from surgery, having chemotherapy or patients in follow up) to use.

As the main forum has many opportunities for carers, partners, relatives to post threads alongside patients we feel there is a need to dedicate a forum especially for patients. This forum is available for everyone to read, however we hope that you will respect patients and allow them exclusive use of this forum.

We will be interested to hear of any of your comments or how you have managed some of the following issues:

• Your treatment - how is it affecting you? how are you coping?
• Helpful hints for others on nutrition and eating - what you have found helpful yourself.
• Medications, things that did or didn’t work and any changes to medication that have improved things.
• Return to/ or absence from work, activity, sport and how you are coping with this.
• Or, it may be you just wish to talk to other ‘forum family’ that are experiencing the same/similar issues as yourself, and have support from each other.

As forum moderators, we will redirect any ‘non-patient’ threads to more appropriate threads within the forum.

We do of course hope that patients will continue to join in discussions across all the different threads on the forums as well as using this specific sub forum.

Best wishes,

Support and Information Team

Sones
Posts: 108
Joined: Tue Aug 21, 2012 7:31 pm

Re: Welcome to this new sub forum

Postby Sones » Thu Nov 01, 2012 7:04 pm

Hi

I was diagnosed with PC in September 2011 and had surgery (whipple) in October 2011 followed by six months of chemo which finished in May this year. I would love to be able to talk to anyone on this website who has found themselves in a similar position. My journey has been very traumatic but I know I am extremely lucky to have been able have surgery as I know for many PC is diagnosed to late, my journey continues but i am more than willing to share my experiences good and bad with you.


Sue.x

broken850
Posts: 1
Joined: Sat Nov 03, 2012 6:06 am

Re: Welcome to this new sub forum

Postby broken850 » Tue Nov 06, 2012 10:28 am

I have not seen any Dr's!!! this is worrying me a little, David's surgeon has told him he is happy with the procedure.

PCUK Nurse Jeni
Posts: 1015
Joined: Mon Jun 14, 2010 1:30 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Jeni » Tue Nov 06, 2012 4:08 pm

Hi broken850,

Welcome to the boards.

You have not said much in your post? Perhaps you might like to post again outlining your situation so people can support you better?

Kind regards,


Jeni.

PCUK Nurse Dianne
Posts: 271
Joined: Tue Aug 14, 2012 3:29 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Dianne » Tue Nov 13, 2012 4:00 pm

We would love to hear from any patients out there who would like to join the patient forum. This could be to say how you are feeling, or if you have found something that has worked well for you, be it medication, any types of treatment or if you wish to ask a question. If you wish to share any or part of your story that is also welcome. We have set this forum up especially for patients as we have noted that many carers/families utilise the other links on the forum pages.

If you wish to post a thread with questions we are happy to answer the same within the forum.

Dianne
Support Team

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: Welcome to this new sub forum

Postby dabber66 » Tue Dec 18, 2012 9:12 am

Morning Dianne, I know there is information on this site regarding creons, but do not seem to find it this morning!! I had a distal pancreatectomy at the end of October, this year, and have just been back to see the surgeon. He suggests that I start taking creons, he thought perhaps 25,000 with a main meal and 10,000 with a snack, can you give me any more info on this. Carole

PCUK Nurse Jeni
Posts: 1015
Joined: Mon Jun 14, 2010 1:30 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Jeni » Wed Dec 19, 2012 9:58 am

Hi Dabber,

Will email you about the creon.

KR,

Jeni.

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: Welcome to this new sub forum

Postby dabber66 » Wed Dec 19, 2012 12:42 pm

Thanks Jeni.

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: Welcome to this new sub forum

Postby dabber66 » Tue Mar 19, 2013 10:08 am

Hi Jeni, or anyone else who can give me some more advice regarding creons. After surgery at the end of October, my guts seemed to get back to a sort of 'normal', but was advised to take creons in January. Since then, I have struggled, being very bloated, but no other symptoms (mine is a non functioning tumour) I have tried taking more creons (perhaps not enough more?) taking none, and at the moment I am taking the creons out of the capsule, just in case I am intolerant of the coating - or could I be intolerant of the brand creon - has anyone else had a similar experience. At the moment, starting today, I am doubling my dose, still taking out of the capsule, because my guts (below my tummy button) are very sore, and it hurts to go to the loo - not constipated, very loose. Why is it that I didn't need the creons from the beginning of November, and December. Has anyone else had a similar experience - Also, I have noticed mention of Turmeric capsules, can you tell me what this does. Carole. :?:

Support Team
Site Admin
Posts: 120
Joined: Fri Sep 23, 2005 3:50 pm

Re: Welcome to this new sub forum

Postby Support Team » Mon Mar 25, 2013 10:46 am

Hi Carole,

Jeni is on annual leave at the moment but I will get her to respond to you when she returns. In the meantime you may want to read our FAQ on pancreatic cancer enzymes which may answer some of your questions.
http://www.pancreaticcancer.org.uk/info ... ic-enzymes

Kind regards,

Anna
Support and Information Team

suef
Posts: 103
Joined: Fri Jun 25, 2010 1:58 pm

Re: Welcome to this new sub forum

Postby suef » Mon Mar 25, 2013 3:24 pm

Hello Carole,

I had a Whipple in February 2010 and have been taking Creon ever since. I have Creon Forte (25000) and take 15-20 a day. At first they made me nauseous but I got used to them after about 3 weeks. I usually take 1 or 2 before I start eating then a further 1 or 2 while I am eating. If I am eating a fatty meal (very rare as I avoid having a lot of fat), I might take 6 in total, before and during the meal.

Good luck!

SueF

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: Welcome to this new sub forum

Postby dabber66 » Mon Mar 25, 2013 3:59 pm

Thanks for getting back to me Anna.
and Hi SueF - do you really take 15 to 20 - capsules - 25000 size a day, seems a lot - I have had the faecal elastase test, and understand I am borderline, but I have tried all sorts of doses - from none to lots!! but dreadfully bloated all the time - I take them out of the capsule, put on my tongue, and swallow with a fruit smoothie, just thinking I may be intolerant of the capsule - I wonder if anyone has tried any other brand of enzyme. Thanks for getting back to me, hope to keep in touch. Carole x

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: Welcome to this new sub forum

Postby dabber66 » Mon Mar 25, 2013 4:02 pm

SueF, forgot to mention, I lost the other end of the pancreas - I had a distal pancreatectomy, and my spleen and part of my tummy. Carole x

PCUK Nurse Jeni
Posts: 1015
Joined: Mon Jun 14, 2010 1:30 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Jeni » Tue Mar 26, 2013 4:03 pm

Hi Carole,

Please do not place the spheres directly onto your tongue as they can damage the lining of the mouth, and can also be activated too fast.

Sue F is on a good dose of pancreatic enzymes, and this is a pretty "normal". I think there is possibly a need for your brand to be switched, as it does not sound like they are working for you?

Can you call me tomorrow on the support line number, 020 3535 7099, and we can have a good chat about this, and also, can you have your dosage and your regular food diary ready so we can have a discussion of whether you need more.

Kind regards,

Jeni.

dabber66
Posts: 36
Joined: Tue Nov 20, 2012 9:39 am

Re: Welcome to this new sub forum

Postby dabber66 » Tue Mar 26, 2013 7:07 pm

Many thanks Jeni, didn't know not to put directly on the tongue, will give you a ring tomorrow. Carole x