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b9_iwish
Posts: 5
Joined: Sun Jan 05, 2020 12:35 pm

Recently diagnosed PC

Postby b9_iwish » Wed Jan 08, 2020 12:28 am

After a CT scan end November a tumour was found in the mouth of the pancreas.
I had an endoscopy US and biopsies on 20 Dec which showed the tumour to be 33mm x 40mm and classed as adenocarcinoma. I asked the specialist nurse what stage was it, she replied stage numbers weren't used any more. She also concluded that it hadn't spread.
Occasionally I get constipation and have tried prunes, but I suffer a continuous burning/griping sensation that sometimes lasts up to 3 hours.
I've suffered muscle atrophy about 30% loss. But I'm eating 3 meals a day plus snacks in between with little weight gain. My GP prescribed Creon 10000, but again these give me uncomfortable griping similar to the prunes. I persist, but its not easy.
Due to weight loss, my spine is more prominent and sleeping in bed can get uncomfortable and restless, perhaps 3 to 4 hours a night.
I'm seri g oncologist Fri 10th ref chemotherapy options, hopefully from what I've read this will eliminate some of the pain.
My pain relief is 500mg paracetamol and 324mg ibuprofen. I tried codeine but it blocked me up for 3 days... :shock:
Any help or advice with the above would be gratefully accepted. My better half is doing her best to find what's best for me too.

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: Recently diagnosed PC

Postby PCUK Nurse Jeni » Wed Jan 08, 2020 11:44 am

Hi there,

Welcome to the forums - no doubt, not a place you would choose to be.

Thanks for your post, and I am sorry to hear that you have been diagnosed with pancreatic cancer.

I will email you directly with some more information, as quite a bit to post on here.

I hope that's ok?

Jeni.

Jeni Jones
Pancreatic Cancer Specialist Nurse
Support Team
Pancreatic Cancer UK
email: nurse@pancreaticcancer.org.uk
support line: 0808 801 0707

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: Recently diagnosed PC

Postby PCUK Nurse Jeni » Wed Jan 08, 2020 11:48 am

This content has been moved from another topic as is from same id:

I'm a 59 year old male who up until early October led a healthy and active life. I started experiencing backache end of June and on a rare visit to my GP discussed this with them and was told it was muscular. My medical notes showed my father died of pancreatic cancer 12 years ago and there was a high level of cancer in our family - 4 out of 5 of us. Mine was benign testicular cancer 12 years ago - all sorted and clear.

Again I went back to my GP (locum) in July and discussed a drop in my energy and the backache. Again, muscular. End of August, I managed to get another appointment after a lot of phone calls and discussed the same symptoms with a slight drop in appetite and how some foods no longer were comfortable to eat - i.e. bloating etc. The GP leapt on to the diagnosis of IBS even though I again mentioned the cancers that had affected the family. I stuck to their diagnosis and followed their regime of treatments for this.

Mid November I developed jaundice and being a typical man made nothing of it until my partner said we ought to see the GP due to my yellow skin etc. We run a busy tea room and on Friday 22nd Nov my GP called me up and said stop work and go to A & E ASAP and treat it as an emergency. We ran around emptying the tea room of customers and set off for A & E where I was put on a saline drip and had a CT scan on Sunday 24th Nov. The results came back with a tumour in the mouth of my pancreas. That really focused our attention, plus some tears.

I was put on IV antibiotics for a week then sent home with another week of oral antibiotics and told to report in once jaundice had abated for an ERCP. This was duly done with a stent fitted and cell samples taken from the tumour via a brush. 10 days later, I was told that not enough abnormal cells had been collected for analysis, so another week passes by for an endoscopic US (my, how the tick tock of the clock creates a sense of urgency). The EUS prior to Christmas showed I had a tumour some 33mm x 40mm attached to the portal vein with locally advanced adenocarcinoma. This has not made for pleasant reading material on Google!

Anyway, I'm seeing an oncologist on Friday 10th Jan hopefully with a view to chemo that will shrink the tumour with a view to operating. Perhaps I'm being optimistic here, but it's all you can do.

Apart from the above, I don't have any other medical issues, although I have lost at least 30% muscle mass, have pain in my back which causes broken sleep (I'm taking paracetamol and ibuprofen. My GP gave me codeine but it caused too much constipation), We go swimming every other day, eat healthy foods (almost vegan...!), lots of water and protein supplements. I'm also taking Creon, which can cause a bit of discomfort, but I'm sure it's worth it.

Sorry for the long diatribe - any help or advice would be gratefully accepted.

PCUK Nurse Jeni
Posts: 1101
Joined: Mon Jun 14, 2010 1:30 pm

Re: Recently diagnosed PC

Postby PCUK Nurse Jeni » Wed Jan 08, 2020 11:49 am

This content has been moved from another topic as is from same id:


Addendum

A few questions I could do some help with please

1. Back pain at night - I take Paracetamol and Ibuprofen but not opiod yet due to constipation. Any alternative?

2. I've suffered considerable weight loss - muscle atrophy, any thoughts on reversing this? I'm taking Vega essential proteins.

3. Creon during meals causes burning pain, mainly in evening when trying to relax. Anything I can do about this?

Any help with these would be much appreciated.

b9_iwish
Posts: 5
Joined: Sun Jan 05, 2020 12:35 pm

Re: Recently diagnosed PC

Postby b9_iwish » Wed Jan 08, 2020 4:36 pm

Many thanks for your email Jeni, I've just sent an email to you.

Much appreciate your help.