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

Moderator: volmod

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

Re: Welcome to this new sub forum

Postby dabber66 » Wed Mar 27, 2013 4:40 pm

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
Posts: 1063
Joined: Mon Jun 14, 2010 1:30 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Jeni » Thu Mar 28, 2013 10:41 am

No problem Carole - my pleasure.

Speak soon.

Jeni.

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Tue Jun 04, 2013 11:14 am

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Welcome to this new sub forum

Postby J_T » Tue Jun 04, 2013 11:58 am

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
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Welcome to this new sub forum

Postby Cathy » Tue Jun 04, 2013 12:41 pm

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
Posts: 284
Joined: Tue Aug 14, 2012 3:29 pm

Re: Welcome to this new sub forum

Postby PCUK Nurse Dianne » Tue Jun 04, 2013 2:50 pm

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
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Welcome to this new sub forum

Postby Bee » Tue Jun 04, 2013 6:14 pm

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
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Tue Jun 04, 2013 6:59 pm

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
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Welcome to this new sub forum

Postby J_T » Tue Jun 04, 2013 7:44 pm

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/info ... ancer/diet

Julia x

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Welcome to this new sub forum

Postby J_T » Tue Jun 04, 2013 7:49 pm

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

Bee
Posts: 219
Joined: Fri May 03, 2013 9:39 pm

Re: Welcome to this new sub forum

Postby Bee » Tue Jun 04, 2013 8:06 pm

Hi, have just typed a reply and it has disappeared so it might appear randomly!
As Julia said there is an enzyme supplement , creon, we didn't have to have the test it was given on clinical symptoms, reduced but good appetite and dramatic weight loss. He has small tablets fro meal and higher dose ones for main meals. The creon continues regardkess of any treatment. Aside from advising us re the timing of creon and high calorie foods etc the dietician also a ranged for samples of high energy drinks to be delivered to the house, (within days and several boxes of them). There are juice or milkshake varieties, chris tried them and then we went to gp and he gets the flavours he likes on prescription. Incidentally you are now eligible for medical exemption on prescriptions, otherwise it soon mounts up.
Apologies if we are telling you stuff you already know !

karen17
Posts: 157
Joined: Sun Dec 30, 2012 8:38 pm

Re: Welcome to this new sub forum

Postby karen17 » Tue Jun 04, 2013 8:54 pm

Hi Cestrian and welcome to the forum. Dont want to repeat what has already been said about this damned disease but just to add that my husband was diagnosed with stage 4 pc which had spread to his liver. No real signs or symptoms and no pain. As said before once you see the oncologist he will probably give you options. We had 3 options - gembitcine, folfirinox or a trial. We had a week to decide and chose folfirinox after nights of researching it. The following week he started 12 cycles which have just finished this week. Although weight loss was not a great problem he was prescribed creon. This site and the nurses will be a great support and access people like Macmillan, dieticians, district nurses etc. Macmillan are great with pain relief and with looking into benefits for you. Keep posting your questions, someones always here to help whether its with tips and hints or specialist knowledge from the pcuk nurses
Take care
Karen

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Wed Jun 05, 2013 9:54 am

Again many thanks all. I've contacted GP this morning but having read replies will speak to his secretary about McMillan as they are highly recommended. I just wonder if they will get involved before I have my initial meeting with the consultant this Friday.

cestrian
Posts: 220
Joined: Mon Jun 03, 2013 12:20 pm

Re: Welcome to this new sub forum

Postby cestrian » Sun Jun 09, 2013 1:29 pm

Saw Colo-Rectal Specialist on Friday, I actually thought I would be seeing Oncologist but was obviously confused. Appointment went well, I think he was relieved that I had been given the bad news by my GP. Already on the case for Creons to be prescribed and my wife delivered his letter to our GP yesterday. Appointment with oncologist will be Monday or, more likely, Monday week.

He was concerned at the pain I am experiencing and mentioned the possibility of a key-hole procedure that can help out here and reduce reliance on stronger pain killers that I imagine can knock you out a bit.

As it only involves an overnight stay he seemed hopeful this could be fitted in between initial meeting with the oncologist and commencement of chemo. We will see of course but I was quite heartened and certainly very grateful for information I have gained from this forum.

Many thanks to Dianne for her comprehensive emails that have been so helpful.

Let battle commence!!

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: Welcome to this new sub forum

Postby J_T » Sun Jun 09, 2013 5:09 pm

Well cestrian (what's your real name? :nosey:) it sounds like you have a good team around you. Haven't heard of the op he's suggestions for pain relief but sounds like a good option.

Are they just going to prescribe Creon or have you to do the test? We've had to do the test and still don't have the results! Hoping to get them next week. Our onc doesn't think Ray needs it but we'll see.

I'm sure you'll be glad to get things moving, good luck with it.

Julia x