Tumour size

[PCUK Nurse Dianne]

Hi All,

I am sure you are aware we try not to intervene in your forum but we do moderate it, so I thought it might be a good time to update on the Creon and also the ProCal shots.

So for the Creon, currently 40,000 unit capsules may not be available for some time, however we did have an assurance from the company that produces the Creon that they should be in stock within the year. In the interim it has been suggested that patients who are taking larger amounts of Creon should have access to the 25,000 unit capsules and those patients taking smaller amounts of Creon may be able to manage with the 10,000 unit capsules.

Having said that, it would be worth a conversation with your individual pharmacies and see what their understanding is currently. If you are taking large amounts ie 75,000 + with meals, it makes sense that you are given the 25,000 capsules instead of 10,000 units.

Procal shots, may not be stocked by many pharmacies. The producers of Procal shots is Vitaflo and here is the link to their web site: http://www.vitaflo.co.uk/products/nutrition-support/nutrition-support/calorie-and-protein-supplements/pro-cal-shot/. You could contact them directly and see what service they may provide for you, alternatively you may also find that you can find their products on the internet. From a price comparison I am unsure if this is similar to that of local pharmacies? ie Procal shots sell for £11.85 for 6 x 120ml bottles.

I hope this is helpful and please feel free to be in contact with us on the support line (support@pancreaticcancer.org.uk) if you do wish to have more discussion about either of these products.

Dianne

Pancreatic Cancer Specialist Nurse

Support Team

[WilliamS]

Thank you Dianne. The next prescription challenge is getting the drainage bags. Dad was discharged from hospital with one and was told the District Nurses should drain the ascites daily until the amount of fluid is less than 250 mls / day. The District Nurses didn't have any bags but managed to get one more from the hospital. The local pharmacy has them on order but they won't be dispatched from the supplier until today so we won't get them until next week, meaning Dad has missed a week of drainage. You'd think that the hospital would discharge patients with sufficient supplies to last until prescriptions can be obtained and filled.

[WilliamS]

Some good news from the oncology review - the Consultant has decided that after the steroids Dad is fit enough for a second round of chemo, which will start next week. The hospital were also able to provide some drainage bags as they'd just had a delivery.

Last week when they didn't have any bags, the District Nurse tried to drain using a bottle attachment. I don't know how the bottle works (suction?) but as soon as it was attached Dad yelped in pain so the nurse immediately removed it. Since then he's had constant pain in his side, which is the first real pain he's had with this illness. The nurse then said that they'd previously had to stop using the bottle method with another patient as it caused pain! I hope it hasn't disturbed the tube inside his abdomen - we don't need any more complications.

[WilliamS]

Dad was admitted to hospital again yesterday. He was tremoring and saw a diabetic nurse and G.P. who couldn't find any cause so sent him to A&E. The hospital is planning to do blood tests and an X-ray to check for infection. Boy, this disease is relentless. Best wishes to all of you fighting it.

[PCUK Nurse Dianne]

Sorry to hear Dad has been admitted to hospital, i wonder if he has a stent in his bile duct, as this is often a site of infection as the bile may form a 'sludge' that becomes infected. This has a medical term called 'cholangitis' and means infection in the bile duct. It can make patients feel quite unwell, and usually the treatment required is admission to hospital, some intravenous fluids to stop dehydration and also some intravenous antibiotics. The other issue does require review of the stent, if it is a plastic stent this will probably need to be changed, if it is a metal stent it may mean the patient needs further longer term antibiotics, or another stent inserted, dependant upon the findings.

I hope this is helpful and please do not hesitate to be in touch if we can help. Hope Dad is feeling better soon.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

[allyc1]

Hi William

That's exactly what happened to my dad attempting and feeling unwell. They put another Metal stent inside his other stent as he had a blockage and infection and was generally very unwell. J

He also went jaundiced and his urine was very dark and he had a lot of pain near his shoulderblade. Hope he feels better soon,its awful watching them suffer. All my dad seems to do is suffer. Love to u all x

[Sueoliver]

Hi William,

Hope your Dad is feeling a little better today. This disease is like a roller coaster! Take care of yourself as well.

Love Sue x

[WilliamS]

Sorry to let you forum friends know that my wonderful Dad died early this morning. Even though it's 7 months since he was diagnosed we did not expect the end to be so sudden. He was discharged from hospital after one night without diagnosis and subsequently saw a palliative care doctor who thought the tremoring was likely caused by long-term metoclopramide use so took him off the syringe driver and changed him to oral domperidone. His tremoring stopped and he was much brighter in himself and seemed to be gaining strength.

He went peacefully in his sleep in his own bed. We can assume he was not in any pain as he didn't try to get out of bed or even wake up Mum who was right beside him. In fact, he never experienced any pain since diagnosis or had to take any pain medication at all so we are thankful for that. He didn't even have any adverse side effects to chemo. His only problems were eating and vomiting but he never complained once.

The police told us there will be a post mortem as it is classed as a sudden death. We are all a bit numb and in shock today.

I can only thank all of you for reading, sympathising and for providing so much useful information and advice along the way. Thanks also to the incredible nurses Jeni, Dianne and Chris whose knowledge and advice have been invaluable.

Ours has been a relatively short and bumpy journey. I hope you and your loved ones have smoother paths through this dreadful illness. Best wishes to you all.

[Guest]

So very very sorry to read your Dad has lost his fight.

I hope you can take comfort from the fact that passed away at home, with his loved ones with him.

Thinking of you and your family at this horrible time.

Leila xx

[Sueoliver]

Hi William,

I was shocked to read this and I can only say I am so sorry for your loss. Your Dad sounded like a wonderful brave man and I send my love to all your family.

Take care,

Love Sue x

[jay]

I am so sorry William

love Jayne

xx

[sandraW]

William, so sorry to hear you have lost your lovely dad, but what a truly beautiful end to just go to sleep like that, and your mum will take solace from the fact that she was there right beside him, so knew he did not suffer. We had to have a post mortem when we lost my dad many years ago, so I understand its an added worry for you all. sending love and strength to you all sandrax xx

[Didge]

Dear William, I am so sorry to hear about your dad but I am sure you take comfort that he died peacefully without pain and at home, even though the suddenness must have been a shock. Rob had a dreadful last few weeks when they could not get the pain under control so at least your dad did not have to suffer that. There are very few comforts in this relentless cancer so we must take them where we can! Will be thinking of you, Didge x

[sheena]

So sorry for your loss xx

[PCUK Nurse Rachel C]

Dear William,

I am so sorry to hear this sad news.

On behalf of everyone at Pancreatic Cancer UK I would like to offer our heartfelt condolences.

Our thoughts are with you and your family during this difficult time.

From all the Support Team

Rachel

Pancreatic Cancer Nurse Specialist