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Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Fri Feb 02, 2018 11:24 am

Thank you both for the replies. I guess we'll discuss it with the chemo team once we get started next week. It's good to know breaks can be scheduled and perhaps some steroids can be given for a boost. That would help a lot I think.

We've managed a couple of small trips out this week which has been a lovely bonus and one of them was with my sister to try on wedding dresses. I must admit it's a little bit like going out with a drunk person during the day time which I am guessing is the morphine. Sometimes it's stressful but usually just quite funny.

The past couple of days she's experiencing the runs a bit. It's like she doesn't know she needs to go or anything but as she's having wind it's coming out with it. She is wearing pads but her stomach is gurgling a LOT constantly. It is now affecting her sleep. We called the palliative team but there wasn't anyone available to talk to so called the surgery and briefly spoke to a doctor and he decided it's best for her to come in later today.

She is convinced it's the iron tablets she's currently on but I am wondering if it's just part of PC? We have gone rapidly from not being able to go at all to it basically coming out throughout the day. She was on laxatives to help go but didn't have any for two nights now.

This is certainly keeping us on our toes! Xx

PCUK Nurse Jeni
Posts: 1016
Joined: Mon Jun 14, 2010 1:30 pm

Re: Don’t know where to start

Postby PCUK Nurse Jeni » Fri Feb 02, 2018 4:15 pm

Hi Christine,

Thanks for your post.

This sounds very much like pancreatic exocrine insufficiency - not enough enzymes - please remind me, your mum got the creon, but is she taking them?

If she is, then she needs to increase the dose to eliminate such symptoms - the wind and "urgency" to go to the toilet are as a result of this.

If she is not taking creon, then it would be good for her to start these straight away, and you should see a resolution of these symptoms.

Kind regards,

Jeni.

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

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Fri Feb 02, 2018 5:59 pm

Hi Jeni,
Thanks for the reply - well we’ve been in to the GP and he thinks it might be the type of iron she’s on so he’s told her to lay off it for a couple of days and given her a prescription for a new type providing it all settles down. I mean it is the ‘trade mark black’ from taking iron and she hasn’t had any today so I guess we’ll see what happens over the weekend.

In terms of Creon, yes she’s on them. She was a little frightened of them as thought they were responsible for two random vomits but everything seems okay in that front for the moment and I’ve been encouraging her to have more than she’s been having and she herself is keen to do that now.

The GP mentioned taking the Creon when she takes her tablets as well but no one else has told us to do that so far, is that normal?

Thanks x

Veebee
Posts: 93
Joined: Thu Feb 16, 2017 4:31 pm

Re: Don’t know where to start

Postby Veebee » Fri Feb 02, 2018 6:50 pm

Hi Christine the creon has to be taken whenever your Mum takes food. When she has a meal or a snack she should be taking the creon. My husband worked out himself how many to take with whatever he was having to eat. It was a bit of a balancing act but he took more if he ate more. Advice on how many to take was initially given to us by the Marie Curie nurse. She can't overdose on them so don't worry but they definitely need to be taken with any food and creamy drinks. Vee x

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Fri Feb 02, 2018 7:47 pm

Thanks Vee, that’s pretty much what we’re doing currently. The dietician told us 2 with breakfast, lunch and dinner and 1 with a snack or half a Fortisip/juice.

So she’s taking one with the first mouthful of food then another one half way through if it’s a main meal and now a further one with dessert, even if it’s fruit.

So with medication isn’t required? X

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Don’t know where to start

Postby Veema » Fri Feb 02, 2018 8:30 pm

Christine, it's a juggling act with the creon...my husband took about 6 of the 25000 strength with a meal and 2 or 3 with a snack...and if he had a glass of milk or a milky coffee etc, he took them with that too. He was never advised to take with medication though...what medication does she take?

Like Vee says, she can't overdose in them.

Vx

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Sat Feb 03, 2018 10:25 pm

Hi Veema,
Oh gosh that’s a fair bit more than mum was told to take so that’s worth knowing.

Things are slowing down a bit in that department now she’s been off of the iron for a couple of days but she’s also slightly upped her Creon in general so could be down to that also.

She’s on gabapentin, MST, paracetamol, Metoclopramide plus her regular meds, levothyroxine, clopidogrel and lansoprazole. Finished the antibiotics now and obviously on a break from iron (ferrous sulphate).

She’s also weened off of the steroids now and is definitely lacking in energy again and it’s sad to see that as she had been more like her old self for a while there.

Chemo starts in a few days. We don’t really know what to expect as what we’re told in terms of side effects varies and can be different again from the leaflets they’ve given us and of course everyone is different. I think we’re as mentally prepared as we can be... just terrified.

Friend of mine sent her a lovely ‘chemo care package’ with some nice bits to look after herself with and sounds silly but we’ve already planned our outfits for chemo day. Just want to get started with it now but also dreading it. Xxx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Don’t know where to start

Postby Veema » Sun Feb 04, 2018 3:41 pm

Chemo really isn't as bad as people think...our unit was a lovely little one, we saw the same patients almost every time we went and you get to know them. I thought it would be a miserable place, but it was really upbeat and jolly. My husband had folfirinox and we were there most of the day, so took snacks etc, books, cards, even took boggle in. I used to take my crocheting too as he often dozed off for a bit. The nurses were great and nothing was too much trouble.

Good luck with it...hopefully she won't have any nasty side effects.

Vx

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Mon Feb 05, 2018 5:35 pm

Thanks Veema, that’s good to know. Yes I must admit the unit was much brighter and more airy than I imagined when we went in to meet the nurses and everyone was very lovely. She’ll be having Gem/Cap so that’s just a 30 minute IV but we were told we’d be there about 2 hours in all.

Dreading the side effects as mum isn’t doing all that well at the moment as it is. The palliative care nurse has suggested she stays off the iron entirely for the time being as it’s doing more harm than good for her and she’s to take Imodium to get her through the chemo session tomorrow.

Mum cannot tell the difference between gas and when she actually should be on the loo so we’ve had a fair few ‘accidents’ over the past few days and everyone is exhausted from dealing with it, especially mum as it’s draining her energy. She’s gone all dopey and weird as she was before the steroids, hate it. Was hard work even getting her into her blood test appointment this morning.

I’m hoping she’ll have some steroids to take after her chemo sessions. Guess we find all that out tomorrow. I’m not really doing very well myself and my anxiety is sky high but that’s to be expected really.

Hope everyone is doing okay xx

Veema
Posts: 503
Joined: Mon Feb 02, 2015 5:35 pm

Re: Don’t know where to start

Postby Veema » Mon Feb 05, 2018 8:40 pm

Nige had steroids for 4 days I think after his chemo, but he had folfirinox.

Vx

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Wed Feb 07, 2018 8:08 am

Well chemo didn’t happen yesterday.

Mum’s still having loose BMs so I called the chemo unit before we were due to leave to discuss it with the nurses and they decided she wasn’t to come in as the tablet part of the chemo causes diarrhoea itself so she needs it more under control before she starts. Next week to begin now.

Bit disappointing but think definitely for the best as getting her in there would have been stressful.

Called the palliative nurse to discuss and she checked with the doctors and the conclusion is it’s still from the iron and carry on taking Imodium, eating bananas for potassium and see how we go.

So we wait now. Xx

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Mon Feb 12, 2018 8:42 am

So it seems it was the iron mainly as it’s all slowing down again and becoming a bit more ‘normal’.

Not fully but she’s not constantly in the bathroom now which is a relief however this has now been replaced with utter exhaustion again. I’m not sure if this is because all the extra iron has left her system but she cannot stay awake at all. She was due in for her blood test at the surgery this morning but I had to call the palliative care team again yesterday and they’ve arranged for the district nurses to come in and take her bloods at home.

How am I meant to even get her into the chemo unit like this? Is this ‘normal’ for PC when she hasn’t even started chemo yet? I mean we both have never had great amounts of energy anyway and usually suffer with side effects from meds but can I put the bulk of this fatigue down to anemia?

Thanks all xx

Justamo
Posts: 465
Joined: Sun Sep 04, 2016 10:38 pm

Re: Don’t know where to start

Postby Justamo » Mon Feb 12, 2018 8:50 pm

Hi Christine.

I can't say anything particularly helpful, but I do know that fatigue was the very first symptom that Peter ever showed of PC, and it stayed with him right up to the end. We didn't have any iron problems per se, but when Peter went in for a Whipples operation (which didn't happen) they did discover that he was anaemic and gave him a bag of blood before they sent him home. Anaemia was never mentioned again.

I also know that I have never been so tired in all my life as I was during his illness. I wear a fitbit tracker and that told me I was getting an average of 2 - 3 hours sleep a night for the past year. For the last 3 nights I've had 7 hours sleep. That's a catchup from the tiredness, and the knowledge that I'm not 'on duty' anymore.

I think the cause of the fatigue is probably PC. Check with the nurses. But you can't do much about it, whatever the cause is, and you are doing exactly the right thing by calling on palliative care to help.

Try to stay strong.
Love, Mo

Sandra58
Posts: 5
Joined: Tue Feb 06, 2018 6:58 pm

Re: Don’t know where to start

Postby Sandra58 » Tue Feb 13, 2018 8:50 pm

So sorry your mom is going through this and I wish you both the best. I was diagnosed in August at age 68 with stage 4 pancreatic Cancer already in my lungs and some surrounding lymph nodes. At that point I had lost 30 pounds since the beginning of last year before my diagnosis. Fatigue and stomach pain has been an issue since last year in January. By August when they finally diagnosed PC I was so weak from not eating, drinking or getting out of bed. Chemo was started in August and had to be reduced 3 times as it was too strong for me to tolerate... now it is much better and I have more strength.
Eating and hydration are an on going problem and brought me to the emergency room in October. After much hydration and figuring how and what to eat I am getting my strength back. My son is a doctor and cannot believe that my blood work is great, the tumors on my pancreas and lung have stabilized and with my chemo schedule I can plan what days will be good days and what the bad days will be( usually the 3&4 day after chemo pretty bad)
Anyway I want to give you hope that maybe your mom can get stronger so I will give you what has worked for me:
1) I find it difficult to drink plain water so I add a lot of lemon or lime to the water and try and sip it all day. So try flavors in water but I try to stay away from sugar as my son tells me cancer feeds on sugar.
2) I eat a lot of homemade egg custard because it slides down very easy and has a lot of protein which helps with nausea. My aunt died years ago from pancreatic cancer ( in her 80’s) and I just recently found out that she too craved custard. Lots of eggs, whole milk, little coconut palm sugar ( which is not like white sugar) and vanilla.
3) unsweetened organic applesauce
4) I take a B6 vitamin to help with energy and the numbness in my fingers and toes from the chemo
5) usually I have chemo on Monday and they add a steroid to the IV and the steroid gives me energy and a feeling of hunger for about 2 days ( dr said he cannot give me more that the 1 steroid.... it would cause other problems). So I eat on the days I can, but try and stay hydrated so I can control my nausea.
4. My daughter makes me a healthy smoothie everyday and she thins it out with Almond milk because thick things are difficult for me
5) eating has made me stronger
Love and blessings
Sandra

Christine49
Posts: 34
Joined: Wed Dec 27, 2017 3:35 am

Re: Don’t know where to start

Postby Christine49 » Thu Feb 15, 2018 11:51 am

Thank you Mo & Sandra for your replies xxx

Well mum didn’t get her chemo again on Tuesday so she still hasn’t started it as she had to go in for a blood transfusion instead because her hemlglobin was too low. It has given her more colour and warmth in her body and a tiny bit more energy but really not a lot, just enough to get showered and dressed so far.

In theory chemo is this afternoon now as they have changed her day to make sure she at least gets started this week.

Mum has always eaten a lot of sugar, she’s known for loving it and that really is all she craves lately, aside from boiled eggs sometimes. She is trying her best to have some Fortisip drinks as well each day but she’s always eaten like a bird anyway and now trying to coax her into eating more of what is good for her is tough.

I’m not coping too well this week, I have fibromyalgia and having a big flare up of that plus a 3 day migraine which I am finding hugely frustrating as I want to be more help than I currently am being. Plus I find I cannot nap lately as I think I always have one ear listening out for the phone just in case.

Mum’s lost just over a stone when she was last weighed but she’s always been a really tiny person so didn’t have a lot to lose in the first place and I am sure that doesn’t help as she has no reserves.

I am also wondering if her thyroid function has been affected as she’s on levothyroxine which might add to the fatigue also. Her pain is creeping up again but I don’t know if that’s because she’s been laying down a lot more this week and has affected her back or if it’s due to PC.

My sister is going to chemo with her today and I’ll stay overnight with her. What kind of symptoms could we expect tonight / tomorrow?

Xxx