A forum for advanced pancreatic cancer issues

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WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Mon Apr 27, 2015 7:01 pm

A fortnight is a long time when you're waiting for an appointment. Dad went to the Specialist Centre hospital this morning (about 2 hours' drive away) expecting just to have a chat with the Consultant about the biopsy result and chemotherapy. Apparently the tumour is deemed inoperable because of location near or around a vein. This was decided by the MDT.

The Consultant was concerned about his weight loss and inability to eat solid food and has admitted him, saying he should have another CT scan tomorrow. He's already had 2 CT scans (first on pancreas area and second on liver and lungs) which did not show anything. He was previously told the cancer hadn't spread to other organs.

He is on Creon and Lansoprazole but doesn't have much appetite and cannot chew meat. He says he cannot break it down. He can manage liquids, pureed vegetables, soft eggs, baked beans and tinned spaghetti. Hope they can find out what's causing this as the Consultant said at present he wouldn't be strong enough to start chemo. This is quite a drop in weight and condition - a month ago he was told his strength would stand him in good stead for treatment.

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Tumour size

Postby rsk1974 » Mon Apr 27, 2015 7:14 pm

Two weeks feels like forever, at least if your dad's admitted then they can sort the problem out and try and build his strength up,so he can have chemo. You can then speak to the Dr's on duty and get answers. Good luck, hope you are doing ok.x

Fifi

Re: Tumour size

Postby Fifi » Tue Apr 28, 2015 9:46 am

Hi,

Sorry I haven't replied to you before.
It angers me the wait in cancer patients for getting appointments. Especially pancreatic cancer. Waiting for appointments is just not good enough. It doesn't help the cancer, or your poor Dad's state of mind. For future appointments, do you feel able to try to chase them and try to see if you can get them brought forward?

Have they suggested steroids to your Dad to help with appetite? You could mention Dexamethasone and see if they would prescribe some.
If he is struggling to take the creon, he could open the capsule and sprinkle it onto some banana or apple sauce. He would need to eat it pretty much straight away, after opening the creon. I don't know what your consltants have told you about creon, but your Dad can take as many creon as his body needs. They can help with weight gain. They are enzymes, not medications, so there is no danger to Dad at all.

Leila xx

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Tue Apr 28, 2015 12:25 pm

We did try to chase them but were promised that 27th April was the first available appointment.

He's not struggling to take his Creon or other medication at all. The problem seems to be before digestion. He says he physically can't chew meat any more. He has tried a saliva spray but this didn't seem to have any effect.

The Consultant said the reason for admission was "anorexia" and Dad is due to have a scan of stomach and bowels at 1pm today. Unfortunately I can't be with him as I can't get time off work at present and the specialist hospital is 2 hours away so visiting time would be over by the time I got there. I have spoken to Dad by phone this morning and he'd eaten cornflakes but is now nil by mouth until after the scan. Nothing has been mentioned about steroids as yet - thanks for the suggestion.

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Sun May 31, 2015 8:55 am

Dad has been discharged from hospital after a month. The scans and X-rays did not reveal any blockage. They have diagnosed gastroparesis - the stomach is not moving the contents to the duodenum and bowels. Apparently the recently onset diabetes can damage stomach nerves and muscles. No-one can suggest why he can't eat meat.
He is now at home and having daily visits from a district nurse as he's on a continuous infusion of metoclopramide, which means there's a sub-cutaneous tube in his upper arm and he's permanently attached to the 10" plastic box which holds the dispensing syringe.
He's still vomiting every few days. At least now he's not an inpatient the hospital have said they can refer him to oncology and he awaits an appointment.

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Wed Jun 03, 2015 4:53 pm

Dad can't seem to keep any food down and is being sick every day now. Does anyone else have experience of gastroparesis?

rsk1974
Posts: 80
Joined: Thu Jul 31, 2014 1:21 pm

Re: Tumour size

Postby rsk1974 » Wed Jun 03, 2015 5:16 pm

I don't have any experience of gasroparesis, but just wanted to say I can empathise, my dad was being sick daily, but his was not caused by that. Horrible to see your loved ones being sick and not being able to help.

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Tumour size

Postby Sueoliver » Wed Jun 03, 2015 5:52 pm

Hi William my mum was very sick every day for approximately 6 weeks and they found her stent had moved! I don't know if your dad has a stent? I do not have experience of gasroparesis but don't let it go on! My mum became so weak she couldn't even stand on her own and was skin and bone! We have found the best help we got was from the hospice and A and E !
I hope you get it sorted.
Sue

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Thu Jun 04, 2015 1:02 pm

Dad does have a biliary stent but the Consultant said there was no problem with it showing on the CT scans or X-rays. He has seen his G.P. three times in the last week and the dosage of metoclopramine has been increased twice but it doesn't seem to be making any difference.

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Tumour size

Postby Sueoliver » Thu Jun 04, 2015 8:24 pm

Hi William has he had an endoscopy? It wasn't until Mum had this they realised the stent had moved! Get them to look at everything.
Sue

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Tumour size

Postby PCUK Nurse Jeni » Fri Jun 05, 2015 4:11 pm

Hi there,

Sorry to hear this news, and distressing condition.

What are your dad's blood sugar levels doing? You are right in saying diabetes affects the stomach nerves, but this is when the blood sugar levels are high mainly, so it is good to maintain a balanced level of blood sugar if at all possible - difficult I know when he is vomiting.
If he is being sick every day, then has the GP seen him, or district nurse? Because there is a danger of him becoming dehydrated.
He may also benefit from the addition of a drug called ERYTHROMYCIN. This is an antibiotic, but also acts on stomach motility (ie: speeds up stomach emptying). So, this can be added in to see if it helps at all?

Hope things improve soon.

Jeni, Support Team.

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Sat Jun 06, 2015 9:10 am

Hi Jeni

The G.P. has seen him 3 times this week. The district nurses were coming every day to change the syringe but now they have shown Mum how to do that they are only coming every 3 days to change the needle.

Previously his blood sugar was high - in the low 20s. Now it seems to have plummeted to 2 to 5. He can't seem to eat enough to raise it. I wonder if his insulin dosage is still too high, even though the doctor lowered it this week. The diabetes nurse at the practice told him to aim for 7 to 10.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Tumour size

Postby Didge » Sat Jun 06, 2015 1:39 pm

William there is a real risk of diabetic coma if the levels drop this low. I think if you can't get advice over the weekend you must lower the insulin again yourself. Why not ring 111 to get advice.

PCUK Nurse Jeni
Posts: 1085
Joined: Mon Jun 14, 2010 1:30 pm

Re: Tumour size

Postby PCUK Nurse Jeni » Mon Jun 08, 2015 5:09 pm

Hi William,

How are things now? Has the blood sugar stabilised?
Is it still the metoclopramide which is in the syringe driver? Do you have a diabetic nurse you can call about the insulin dosages?

Jeni.

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Mon Jun 08, 2015 8:03 pm

Hi Jeni
Yes, the syringe driver is metoclopramide. The diabetic nurse reduced the insulin units and initially his sugar level went up to over 29 but has now come down to about 15.

He's lost about 3kg in the fortnight since being discharged from hospital. Early satiety is a real problem. He'll only eat one egg or half a tin of spaghetti and feels full and bloated. He struggles with the volume of a Fortisip and sometimes can't even manage a ProCal Shot. He's been prescribed steroids today so fingers crossed for an improvement.