A forum for advanced pancreatic cancer issues

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Tumour size

Postby sandraW » Tue Jun 09, 2015 1:35 pm

Hi William,
I have not been on the site for a while and just caught up on your posts, sorry your Dad is struggling so much, lets hope the steroids improve his appetite, and he can start to eat a little more. take care sandrax

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

Re: Tumour size

Postby Sueoliver » Tue Jun 09, 2015 8:39 pm

Hi William,
How is your Dad now? He sounds so much like my Mum I understand exactly what you are going through! Take care and stay strong.
Sue

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

Re: Tumour size

Postby WilliamS » Sat Jun 13, 2015 8:57 pm

He seems to be responding well to the steroids (Dexamethasone) and his appetite has definitely picked up. I wouldn't say he's eating normally but certainly much more than the last few weeks and he hasn't vomited since Tuesday. The G.P. told him to eat anything he could get down and keep down. He doesn't seem to be able to tolerate bread or cereal so he has taken to having hot custard, trifle or chocolate mousse for breakfast (don't tell the kids or they'll want the same!)

The diabetic nurse is keeping an eye on his sugar level as the steroids have increased this. It was 16 this morning. His voice sounds almost normal too after being just a whisper for so long. He's lost something like 12 - 15kg since diagnosis.

The district nurse has organised a foam mattress to ease bed sores as he has no muscle left and he was measured on Friday for a wheelchair. He can still walk around the house but is a bit wobbly outside.

The specialist hospital told him on 8th June that he'd been referred to Oncology at our local hospital. Mum called them on Friday and they have no record of a referral so are chasing it up. Fighting the system as well as the disease.

His Performance Status is no longer zero so Folfirinox and Nanoknife are no longer options (he was previously told they were) so they are looking at Gemcitabine alone.

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

Re: Tumour size

Postby WilliamS » Tue Jun 30, 2015 8:23 am

Dad had an assessment at the Oncology Department at our local hospital last week and has put on 3kgs since starting the steroids. He's starting Gemcitabine (Gemzar) chemo on Thursday. He's still vomiting every 4 or 5 days so we'll mention that and see if his medication needs to be altered.

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

Re: Tumour size

Postby Sueoliver » Tue Jun 30, 2015 10:38 am

That is good news I am pleased for your Dad. Let's hope the chemo does its job. Take care. Sue x

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

Re: Tumour size

Postby WilliamS » Fri Jul 17, 2015 9:34 am

Dad has completed the first cycle of Gemcitabine chemo (3 sessions) and seems to have tolerated it well. He doesn't seem to have had any side effects over and above what he already had.

The first and second sessions were fine. When he arrived yesterday for the third session the nurses seemed concerned that his calcium and magnesium levels were low in his blood test. They were also concerned about his ascites which seems to be increasing. They called a doctor down and after discussion with the nurses he decided the chemo session could go ahead.

Dad was sick that evening about an hour after getting home. We don't know whether that was due to the chemo or the gastroparesis. He's not eating well at all again and can't tolerate solids. He's having soup, custard, Ensure Compact and rice pudding. He still has the metoclompromide syringe driver and last week started on Erythromycin but this doesn't seem to have had any effect as yet.

Next Friday he has an appointment with the oncologist to discuss results and decide whether another round of chemo will be offered.

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Tumour size

Postby sandraW » Fri Jul 17, 2015 2:19 pm

Lets hope he gets good news when he sees the consultant, and that they can do something to improve his appetite. take care sandrax

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

Re: Tumour size

Postby WilliamS » Fri Jul 24, 2015 12:59 pm

Dad met with the Oncology Consultant for the first time today. The Consultant said the first priority is to drain the ascites and he seemed surprised no-one had suggested draining it before. Apparently this will be a day procedure at our local hospital next week. The G.P. estimated that there was about 2 pints of fluid in the abdomen, which may be pressing on the stomach so impeding his digestion. However, draining the ascites can affect the body's proteins and minerals so chemo is on hold until that's stabilised. The next chemo session was due on 3rd August.

The Consultant is taking him off Erythromycin as he didn't think it was having any effect.

The Consultant said that not being able to eat properly could be caused by low magnesium so they might take the opportunity next week to give him a magnesium infusion. He has already been taking magnesium tablets. Fingers crossed that it works as Dad is now only able to take custard, milk and Ensure.

On Tuesday he seemed to lose all his strength and couldn't stand up and had tremors. The G.P. has taken 3 blood samples to check for infection as there was no visible sign of anything. He's also prescribed a gel and antibiotics as thinks Dad has oral thrush in the oesophagus but didn't want to put Dad through any procedure to put a tube down to investigate.

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: Tumour size

Postby Bowie » Fri Jul 24, 2015 6:56 pm

Sorry to hear your Dad is still struggling, I hope things get better soon. Fiona X

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

Re: Tumour size

Postby Sueoliver » Fri Jul 24, 2015 11:18 pm

Hi William,
When I read your posts it reminds me so much of my Mum! When they drained her fluid it seemed to help and she has had several magnesium infusions along with others. Mum has a mouthwash for oral thrush which was prescribed by the hospital. It definitely cleared it up.
Is your Dad anaemic? That may have made him feel wobbly and weak or possibly low blood pressure.
I hope he starts to feel better soon and can start chemo again.
Take Care,
Sue

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

Re: Tumour size

Postby WilliamS » Sat Jul 25, 2015 8:49 am

His blood pressure and heart rate were normal when the G.P. checked on Wednesday. I don't know about anaemia - no-one has mentioned that but maybe that's something the blood tests would show. With not eating properly he's probably deficient in all vitamins, minerals and electrolytes.

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

Re: Tumour size

Postby WilliamS » Sun Aug 02, 2015 10:00 am

Nothing showed up in the blood tests so don't know what caused the tremors but they seem to have gone away now.

Dad had his ascites drained on Friday via an ascetic tap, done at our local hospital. He went to X-ray where they inserted a syringe into his abdomen and connected it to a drainage bag. Then he was taken up to a ward to allow the fluid to drain off. He was there from 9.30 a.m. to 6.00 p.m. and they drained 9 litres of fluid (nearly 16 pints). He came home 8 kgs lighter and 5" thinner around the waist.

It hasn't made a difference to his eating but he is more comfortable and can now get out of bed and up from the sofa without assistance. However, some of the weight we thought he had gained when he was on steroids was clearly just fluid and he hasn't gained any weight at all.

He's now waiting for a review appointment with the Consultant and hopefully he can re-start chemo.

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

Re: Tumour size

Postby WilliamS » Fri Aug 07, 2015 4:11 pm

The Consultant Oncologist decided today that Dad isn't fit enough at present to re-start chemo. He's prescribed a 3-week course of steroids and will review him again on 4th Sept. It's frightening that by Sept it will be 6 months since diagnosis and Dad will only have had one round of chemo.

The Consultant also asked Dad to talk to his G.P. about reducing the metoclopramide dosage, and whether the tinzaparin can be taken orally instead of by injection as Dad's stomach is just one big bruise.

Dad's magnesium level is still low even though he's on twice daily magnesium tablets so they've taken some more blood tests to hopefully find out what's causing that.

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Tumour size

Postby sandraW » Fri Aug 07, 2015 9:37 pm

William, this disease is so cruel, your poor dad, hopefully he will get a boost on the steroids, and feel a little better soon. sending love to you all, take care sandrax

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

Re: Tumour size

Postby WilliamS » Fri Aug 14, 2015 4:57 pm

Thank you Sandra. Dad's G.P. came out to visit him on Sunday (yes, Sunday - God bless dedicated NHS doctors) and suggested that his insulin is changed. He also reduced the metoclopramide dosage in the syringe driver to 30mgs/day. Unfortunately there has been no improvement in his eating ability since starting the steroids. They can't seem to suggest why he can't chew and I get the impression that they think it's psychological. It definitely isn't as Dad is desperate to eat solid food again. I had a look through the forum threads and came across this from 8 years ago - seems as though suggesting a psychological reason is still the case. I wonder however if it does mean the cancer has spread?
http://forum.pancreaticcancer.org.uk/vi ... p?f=3&t=57

The G.P.also told him the CA19-9 figures, which no-one has ever given us before. It has gone down from 680 to about 280. Considering he's only had one round of chemo I was expecting this to be higher, so that's good news.

He saw the diabetes nurse yesterday and she has changed him to 2 different types of insulin - a fast reacting one 3 times a day at mealtimes and a slow release one for bedtime.