Tumour size

[PCUK Nurse Jeni]

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]

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]

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]

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]

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.

[sandraW]

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]

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]

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]

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]

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

[WilliamS]

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]

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]

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]

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

[Sueoliver]

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]

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]

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]

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]

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]

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/viewtopic.php?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.

[Sueoliver]

Hi William I hope your Dad is feeling a little better now. This disease is relentless! Good news about his CA19-9 markers.

Stay positive and stay strong for your Dad.

Love Sue x

[WilliamS]

Dad had a permanent rocket drain fitted last week so the ascites can be drained at home, initially by the District Nurse and they said they will show Mum how to do it. The nurse has drained 600 - 700 mls a day so far. His metoclopramide syringe driver is now down to 10 mgs /day so hopefully he can come off that totally soon as it's quite a cumbersome box to wear all the time, day and night.

We're having a real problem getting prescriptions filled at the moment. We've tried every pharmacy in a 20 miles radius and cannot get ProCal Shot at all. Similarly with Creon - the only capsules available are the 10,000 doseage. I've read Jeni's comment that there is a shortage of higher doseage capsules. Has anyone else experienced this supply problem?

[kittycat]

Hope your Dad is feeling more comfortable now with the drain sorted. Regarding the Creons, we have the 25,000 capsules and don't have a problem with them at all but we can't get the 40,000 anymore which I believe have been discontinued. We also have the 10,000 ones but tend to use the larger dosage so that he has less of them. Can't help with the ProCal though as we don't have any experience of that.

On the subject of a syringe driver, my hubby is in hospital on a morphine driver which also has anti sickness medication incorporated. They said he may come home with that but I just assumed that there would be a more 'portable' version available, but am I wrong on that and does the nurse have to come in every day to change it?

Sue

[Sueoliver]

Hi William,

We are also having a nightmare with creon prescriptions. I had such a "to do" with the pharmacist the other day I stormed out of the chemist! Had to phone the GP who kindly sorted it out! Cannot get the higher dosage but Mum has 10000 and 25000 creons.

Keep smiling.

Love Sue x

[WilliamS]

Hi Sue

When Dad was discharged from hospital, the doctor said that the syringe driver would fit in his pocket. I can only assume that surgeons have deep pockets as it's approx 10" x 4" and Dad either carries it in his hand if he's at home or puts it in the bag it came in if he's going out, which has a strap round the neck and one round the waist to hold it on the chest.

The District Nurse changed the metoclopramide syringe the first couple of days and showed Mum how to do it. The nurse came back the next day to watch that Mum could do it herself and now Mum does it herself every day. She says it's not hard - just draw up the medication into the syringe and make up to the required solution with distilled water from a phial (in Dad's case 12ml) and then insert the syringe into the driver. And then fill in the paperwork in the District Nurses file with medication and water batch numbers and battery strength. It really drains batteries which have to be replaced every few days.

Hope your husband is home soon and that the pain is under control.