Don’t know where to start

[Christine49]

Well you guys are certainly right in calling the PC journey a rollercoaster.

Mum’s palliative nurse suggested some steroids for her to boost her up a bit and they have worked a treat, given her some energy and appetite back for about a week now. She said she feels more like her old self again and now she’s finished a second round of antibiotics seems to have finally shifted the chest infection she picked up in hospital over Christmas.

We had two ‘random’ incidences of vomiting - one on the day of starting steroids where she was eating, didn’t feel sick but was suddenly very sick and then once again a few days later after eating a fair amount the day before and waking up feeling nauseous. We suspect both were caused by a combo of not taking enough Creon and being pretty constipated which now appears to be an ongoing problem.

We had the appointment with the chemo nurses a couple of days ago and Mum is now due to start chemo next week. We’re all terrified but equally keen to get it started. Such lovely nurses at the unit it almost makes it a less frightening experience.

Unfortunately yesterday we were told she’d need to come off the steroids in order to start the chemo which was a bit of a blow as they are making such a difference, she’s been pottering about and keen to get out for the first time in weeks. So it goes.

I am keenly looking into things like nanoknife but no idea if mum would qualify and find myself getting confused with conflicting information.

I’m trying to read up on everyone’s stories but I find I am getting too upset each time so please forgive me if I only spring in and out of the forum for help and reassurance.

Best of health to everyone. Xx

[Christine49]

If anyone’s reading I have a question from my sister who wants to get married very soon so mum can be there. She’s currently looking at the end of March.

Mum’s chemo starts next week so we have no idea how she is going to respond to it yet but my sister wants to know if it’s better to book her ceremony for the week off from chemo? Mum will be 3 weeks on (IV + tablets) then a week off from everything before beginning again. The date options for her venue show for a Thursday which will either fall 2 days after the IV chemo or 9 days depending which week she picks.

Thank you. X

[Veema]

I can't help as my husband had a different chemo, but would imagine it would be better on her week off as her body will be getting ready for the next lot.

Vx

[PCUK Nurse Rachel C]

That's lovely news that your sister is getting married! What a lovely gesture too, to try and fit in around Mum and her chemo....I'm sure your Mum is very pleased!

I guess in an ideal world, it might be nice if the ceremony was booked for Mums week off chemo, where she might be feeling slightly better in herself. As you may know, sometimes chemo dates can change(due to side effects and blood counts), however, if Mum just lets the Oncology team know that she has a very special occasion to attend, they should be able to work the chemo around Mum.

Sometimes, people can also have an extra week off chemo for special occasions or for holidays, so do discuss this with Mums team and take this into consideration. I'm sure the Oncology Team will do everything they can, to work the chemo out around Mum.

With kindest regards,

Rachel. C.

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707 (Monday-Friday: 10am-4pm)

[Dandygal76]

Hi

I am glad mum was better on steroids. I have not been on much but re the wedding, I would book as you see fit and then just ask for a break. If it was me (with hindsight) and you really want mum to enjoy it then I would have the week off before as well and her dr's should go for that. People have time off chemo all the time for all sorts of reasons and I know it seems frightening to do so but if your mum is looking forward to it, just go for it. It is really hard to see when you are down the rabbit hole that it prob won't effect anything too much but will create a beautiful day you can all enjoy. Also, dad always took steroids for such occasions so make sure you get some for it! It will make the day more enjoyable for mum.

xxx

[Christine49]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

Vx

[Christine49]

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]

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]

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]

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]

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

[PCUK Nurse Jeni]

Hi Christine,

Apologies that you asked a question about taking Creon with medication - I note Veema has answered, thanks for this Veema. And correct, they are to be taken just before eating, or as she is doing, one before and one during - she actually probably needs a lot more than she is taking Christine, as Veema has indicated anyhow.

There is no requirement to take Creon with other medications at all - just take with food or snacks, or milky drinks.

Side effects of chemo - your mum should have been given an information sheet with the side effects on it? Hopefully, she still has this, and also, a record of the number to ring in emergencies?

Gemcitabine can often cause a "flu like" reaction 24-48 hours after the infusion, so if she feels hot, or shivery, a good idea to take her temperature and let the chemo unit know if it has gone up. It can also cause a rash on the body, some nausea (queasiness), for which she should have anti-sickness medication given, and maybe some muscle aches - these are the main ones.

The capecitabine tablets can cause sore mouth, sore hands and feet (tightening of the skin, and red skin, cracking of the skin), and diarrhoea. It can also occasionally cause angina type chest pain - please do phone the chemo unit if your mum experiences any of these side effects.

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]

Hi Jeni,

Thanks for confirming about the Creon. She’s generally upped her intake of them but then this week her appetite has vanished again.

Yes we were given a sheet with the side effects originally, which I have now dug out of the folder and have had a read of as you’ve reminded me we had it.

She was quite anxious and fidgety last night (I stayed at her house) but she does hate night time anyway so not sure how much of that was related to the treatment or not. She’s been a bit queasy but is already on Metoclopramide so hopefully that will take care of the worst of it at the moment.

She’s had her first lot of tablets this morning and I’ll need to clarify if she’s taking those for 21 days or 14 as the packet insert says different to what we were all thinking.

She feels achey and stiff as well but the main thing is the fatigue. Are you able to tell me what circumstances warrant having some steroids alongside chemo as she doesn’t appear to have been given any and wasn’t allowed to continue with the short course she had before chemo started. It really did make a big difference to her. I will of course speak to the chemo team about it but would really value your thoughts as well if possible.

Many thanks xx

[PCUK Nurse Jeni]

Hi Christine,

GemCap - the tablet chemo is usually for 21 days - please do clarify at the chemo unit for her though. she would need to follow her prescription, rather than the packet insert - this should also be clear on the patient information leaflet.

Great that you have recapped on the side effects from the Patient Information Leaflet - always handy to keep this to hand in case you might need again.

Steroids are only given post chemo with more toxic treatments, ie: those where the incidence of high grade nausea and/or vomiting is likely. So, on the GemCap regime, steroids would not be prescribed after chemo.

However, there is no reason not to prescribe steroids aside from chemo if needed, so where there is a decreased appetite & energy levels etc....I am not sure as to why she could not continue with these pre chemo - did anyone explain this to you? It might be good to find out why?

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]

Thanks Jeni, I will definitely clarify about the tablets when we are in for the IV chemo this week. I am sure it was 21 days as that makes more sense.

Well I put a call into the chemo nurses on Friday about the steroids but no consultants available so after a bit of chasing around today the decision is no steroids ‘because of the side effects’, some of which were briefly explained but we were at least hoping for a short course to pep her up a bit.

I was explaining that mum is really weak with no energy etc and they said she might not be well enough for chemo if she’s like that which is a blow as she’s only had one lot of Gem so far.

They are going to try and arrange for her to see the consultant a bit sooner than she was booked in for to discuss it all. I just wish she could eat a bit more as she’s already under 7 stone and not maintaining any sort of appetite.

Also my sisters wedding is coming up in 5 weeks and at this rate mum won’t be able to attend. Bit of a depressing day all round but I guess we’ll see what the consultant says when we see her.

Thanks again xx

[PCUK Nurse Dianne]

HI Christine,

Firstly as your sister's wedding is 5 weeks away, it might help to explain this to the Oncologist (if you have not done so already) and discuss some ways around 'managing' chemo beforehand so that Mum may feel better and consider participation this special day. It may be that she can 'skip' a chemo if due that week to allow her to be part of the wedding as I am sure this would mean so much to Mum and of course your sister to be present.

I had a quick look back through your thread and there is mention of a dietician at the beginning of February, and i wonder if Mum has been reviewed since then? It might be worth asking about this or having a follow up call to see if any other support can be given to Mum this time.

My other thought is around the chemotherapy timetable, many patients find that on some days post chemotherapy they struggle with food, and on the days they feel better they do try to increase their intake to improve their intake and weight. Sometimes keeping a diary for a few days might help to recognise foods that are easily tolerated or cause less symptoms.

Christine don't hesitate to have a chat with us if that might help too, i am sure this must be a difficult time for you all.

Kind regards,

Dianne

Pancreatic Cancer specialist nurse

Pancreatic Cancer UK

Support line: 0808 801 0707