Welcome to this new sub forum

[Support Team]

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]

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]

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]

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]

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]

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]

Hi Dabber,

Will email you about the creon.

KR,

Jeni.

[dabber66]

Thanks Jeni.

[dabber66]

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]

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/information-and-support/diet-living-with-pancreatic-cancer/living-with-pancreatic-cancer-faqs/what-are-pancreatic-enzymes

Kind regards,

Anna

Support and Information Team

[suef]

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]

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]

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]

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]

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

[dabber66]

Would just like to post a big thankyou to Jeni, for her time this morning, on the telephone - you are such a great support to us all. Carole.

[PCUK Nurse Jeni]

No problem Carole - my pleasure.

Speak soon.

Jeni.

[cestrian]

I have very recently been diagnosed with PC which of course came as a major shock when broken to me by my GP. I have my initial appointment with the specialist this week and am of course very apprehensive as it appears that apart from the tumour being inoperable I also have lesions on lung and liver. I have taken a lot of heart from various threads on here but my main worry is that it may be too late for effective treatment though no doubt I will find this out and of course the only thing to fear is fear itself. My wife, family and friends are amazingly supportive and I am staying strong and positive and guess it is the not knowing and the initial shock that is affecting me most at the moment.

I have suffered weight loss and increasing pain over the last 2 and an half months and have gone through the ultrasound, endoscopy that was inconclusive and finally CT scan that revealed the awful truth. My pain relief from GP helps to a point but I do spend a lot of time with at best dull pain in my abdomen and back, helped by a hot, wheat bag.

I have printed out your Newly Diagnosed Pack which is very helpful and full of practical advice and assistance even down to space to record details of the Multi Disciplined Team involved. I now just look forward to hearing where I go from here and to start fighting if treatment is recommended.

[J_T]

Hello cestrian and welcome to the forum. I am sorry to hear that you had a pc diagnosis but you will get much support here from the forum 'family'. This diagnosis comes as a shock to just about everybody as it such a sneaky disease!

Your story sounds similar to my husband in that he had a couple of months of discomfort which he described as 'indigestion'. He had PPIs, an ultrasound and ultimately a CT from which he was diagnosed as having a locally advanced pancreatic mass. It has since spread to a lymph node and he has undergone 3 cycles of Folfirinox.

I would urge to contact Macmillan as they are excellent with pain relief. Ray is now on morphine slow release tablets, paracetamol and Oramorph if needed, which it hasn't been since he started chemotherapy.

Its a steep learning curve with everything to do with this disease so don't beat yourself up about ANYTHING. Do ask questions and you'll find the support staff here excellent.

Regards

Julia

[Cathy]

Hi cestrian,

Your story is sadly familiar - as Julia says, it's a sneaky disease. My partner (Jonathan) and I were in the same position as you now are 6 months ago when he was diagnosed with inoperable advanced PC after some low level pain with no other symptoms.

I don't wish to repaeat all that Julia has said about how excellent this forum and support staff are but please do ask any questions. As Julia did mention, and from our own experiences, when Jonathan's treatment started the pain relief was almost immediate and so I hope that you find exactly the same.

Cathy xx

[PCUK Nurse Dianne]

Dear 'Cestrian',

Welcome to the forum and thank you for joining. I am sorry to hear of your very recent diagnosis, such a difficult time with lots of information and devastating news. I am sure you will find the forum very supportive. The forum family are all very good at sharing their stories, providing hints and tips and generally caring about you.

I would like to offer the services of our support team, so will email you independantly with some guides on where to go from here.

As a reminder for others, our support line runs from Monday to Friday, 10-4pm. You can utilise the service as many times as you require, there is no limit. We are contactable by email (support@pancreaticcancer.org.uk) and by phone (020 3535 7099).

Kind regards,

[Bee]

Hi cestrian,

Sorry to hear of your recent diagnosis, as you say it is such a shock. My husband was diagnosed in January and our lives have taken a very direction. I hope all goes well with your appointment, I hope you are being seen in a specialist centre. Don't be afraid to ask all your questions and write them down before you go in if need be, no one ever minds that. Keep us posted and once again good luck!

Ps seeing a dietician was a huge bonus for us, and his weight loss has now stopped completely, this happened after seeing the dietician and starting enzymes but before any actual treatment.

[cestrian]

Thank you for the very supportive replies and the e-mail to which I have responded. One question I do have is when any treatment is likely to start. If this is some time off then I think I do need some help in the meantime as I have lost a lot of weight and have little appetite as well as very interrupted sleep with pain waking me often through the night.

[J_T]

cestrian, as I said earlier contact your Macmillan nurses they will sort out your pain relief.

There is a test you can do to see if you need help with 'Creon'. It helps to digest food and ensures you are getting all the goodness from what you eat. It seems that some specialists give it automatically but we have had to ask for the test (its a poo sample) and we're still awaiting the results. I know others on here have found invaluable.

I'm sure someone who knows more about it will be able to tell you more or email Jeni or Dianne for more information.

some useful info here http://www.pancreaticcancer.org.uk/information-and-support/diet-living-with-pancreatic-cancer/diet

Julia x

[J_T]

as regards the start of treatment, once you have had the meeting with your oncologist he will explain your options and set things in motion. You can still have chemotherapy if the cancer is elsewhere. Hopefully it will 'zap' it all!

Julia x