Thank you and our story... but we are not that far yet!

Well said Sandra!

Of course I totally and utterly understand where Rachel is coming from and Rachel has made some very good comments but when it's your loved one suffering, reason goes out the window! I would gladly rob a bank or run the streets naked (trust me, that's not a pretty sight) if I felt it stood a 1% chance of giving me extra time with hubby.

I actually think DG was very brave to post her intentions online, I think a lot of us who would find themselves in that situation, may not say anything "out loud" but still do the very same thing, it's human nature when you love someone.

I want everyone to have the same opportunities. You are both so supportive and I really appreciate it. If we win through on this in any remote way then I want the story told. I want to save people the heart ache of the research and the solutions. I keep saying... this thread is not going to fail. My dad is my inspiration and we are fighting this blasted thing. x

Say hello to my dad.... https://www.justgiving.com/fundraising/Claire-Britnell1?utm_source=Facebook&utm_medium=fundraisingpage&utm_content=Claire-Britnell1&utm_campaign=pfp-share

It is always good to picture the face of people. This is my sister as well.. I would have done PCUK but it all goes the same way and to the same cause ultimately. x

This may sound totally ridiculous but have I already donated DG?!!! I will always support a fellow family member in their attempts at fund raising. I've already sponsored a few on here (shown as Proud Wife) and can't remember who - my brain and head has gone out of the window.

nothing a good night's sleep won't fix. I have to laugh. We had a double air bed (base and mattress) in our spare room. My son and I have had a good old giggle throwing it downstairs as I will be sleeping in the lounge tonight, next to hubby in case he wants to go falling again. We have comode. We have zimmer frame. We have each other. What more could be ask for! xx

Hey PW, no need to donate... my sister started the page today and I thought it was a nice picture and easy to show you all. I just wanted to show you my dad. I hope you sleep well tonight... it must be really hard on you. It is hard not to miss them even though they are still with us! x

Made a small donation, I had to seeing the cause!

Night night xx

Dear All,

It’s great to see the conversation open up and see a healthy debate going on!

I appreciate that I am very much coming from a healthcare professionals perspective on this.

I also understand the need, that as a loved one, you would go to the end of the world and back, just to get the best treatment available!

I just wouldn’t want to see a treatment given when it wasn’t going to have a clinical benefit for the person involved and then for it (potentially) not being able to be given at a later time point, when it would have been of more benefit (if you get my gist).

I certainly encourage patients and carers to question and challenge decisions, which they are not happy with! Decisions behind treatment choices should be evidence based and the healthcare professional(s) should be able to demonstrate the rationale behind any decisions that are made.

It’s absolutely fantastic that your sister and family are running an 8km obstacle course! We wish her well and do let us know how she gets on!

Best wishes

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

Thank you Rachel.. my sister is up to £720 already. My dad used to be an athletics coach and some anon parents just put up £150. And such lovely comments from people... it has made me cry. I have been really good at not crying as well! x

Looks like we have joined PW and hubby tonight on a Friday club - dad is in hospital with temperature going up rapidly and indications of infection. I think he has been sat like it all afternoon whilst mum worked. I popped round when I had no answer from him and he could not move with a temperature of 38.9 and chills at the same time. Hopefully it will be resolved quickly with some antibiotics on an IV.

Hi Dandy,

Sorry I am a bit late on this. I can see both yours and Rachel's point of view here. If I hadn't any experience with losing a loved one, I would 100% agree with Rachel. But sadly being where I am, I would have given anything, done anything for my Dad. I would have given my own life, I would now if it would bring him back.

Medical people mostly know nothing on pancreatic cancer, if we only relied on them, and never questioned them, our loved ones would probably pass away much earlier.

Leila xx

I am so sorry to hear that your dad is currently poorly too. IV antibiotics work very well and quickly so I really hope by now he is starting to feel a bit better? Please update as and when you can. Thinking of you my lovely xxxxx

Dad is home after staying in hospital to have IV antibiotics and is hopefully coming out the other side of it now. He has been given 2 oral antibiotics to continue with. He literally got so ill he could not walk or pick things up and it was very worrying. I think he has learnt a lesson now in raising the alarm asap as soon as he feels ill. We are all okay... a minor setback compared to some. He is about to enter week 2 of chemo and then has one more week before we get the next scan. x

PCUK nurses - can I ask a question on something we touched upon but did not finish because we got things a little more under control at home. Dad is taking 0.5mg Lorazepam twice a day, one in the morning and one evening. Is this a correct dose because the anticipatory nausea seems to be building up again. The last 2 weeks he went to the trial he was sick the night before chemo but not on the few days before that and now he says he is starting to think about it all the time again and the 'mind thing' is back. Thanks, DG

Thanks Dandygirl for the question,

I am sorry to hear that Dad may be struggling again with anticipatory nausea. I have checked the BNF (British National Formulary) for recommended dosage and this suggests (1-2 mgs), so in essence Dad has room to increase this to 1mg twice daily. I would also just check with Dad's oncology team if this does not improve as there may be an alternative that could be given. There are other considerations too, for example treating anxiety and any signs of depression (both understandably common in this condition) that may also help in treating the 'anticipatory issues'.

I hope this is helpful and of course you know to come back to us at any time. There are some other stronger agents for anticipatory nausea, and worth touching base with the oncology team about this, I will also email you about this Dandygirl so that this is worth a discussion to be taken forward.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Team

Revamped my slowly growing group today...https://www.facebook.com/groups/495134694006085/ please join us. No rules, just be nice.

Just a little update on dad. He is feeling very down and we have managed now to get him to take some anti depressants. He said 'I don't believe in that stuff' but we talked about it on a medical serotonin level... if the chemo is knocking everything out then why not that as well. So, today he has started them. It was interesting that the PCUK nurses mentioned them and then the same day 2 separate people who have dealt with cancer in their families did say to me, make sure he gets anti depressants. They seemed to think it helped them massively to endure the chemo. So, we are going to give it a go and I will update you in a few weeks. In the meantime, we have told the trial no chemo this week. This gives him a 3 week break and hopefully he can have some lovely time with his wife and children and 4 grandkids... I am looking forwards to saying hello to my lovely dad again and not the one under the blanket on the sofa. I do hope it happens on week 3. x

DG, I am right here behind you and your Dad. I will be supporting you every inch of the way. I've read it before but never had to say before, PC ruins families and changes their lives forever.

Please take it from me, they will take a good 6 weeks to really kick in but when they do, they are just wonderful. They take the edge off.

I'm not surprised your dad is feeling down. How's his appetite, weight and sleep pattern? I will be routing for your dad as I will Louis and everyone else on the good side of the divide.

Lots of love xx

Hey PW. I am still right behind you as you face life without your lovely husband. It is so unfair this happened to you all and I am always even so much more grateful that I had my dad for 20 years longer than your son. I was reading the post (I think it was Marmalade earlier but need to check) that said it is hard when you lose your parents as you have known each other since nearly forever. But, I am not sure I agree. I think it is harder on you and Marmalade. I walk through my front door and I am used to to not living with my dad. He brought us up to thrive on our own terms. My mum... my dad... their whole lives have been entwined intricately for 43 years. Should my dad succumb to this awful disease it will not be me that comes home to an empty bed or eating on my own or even living around his things. I have cried lots for a family I do not even know and I have got your back as well. x

Your dad just has to be one of the lucky ones and that's why I will be with you every step of the way. PC will meet It's match one day and I hope and pray it's your dad's trial.

Night night forum family xx

Okay, I have started to consider that all the tablets my dad is on to treat symptoms may actually be causing symptoms and toxicity. I am not sure anyone has an actual overview of what is happening (and I may be the partial cause of this by being an unqualified proxy dr). Dad gets a symptom and I research or ask PCUK etc and then go to the trial and they say yes it is fine with the protocol. They then sometimes prescribe a drug or I will go back to the GP and the GP will say ‘is it okay with the trial’ and I say trial says it is okay with protocol. They then prescribe for him. So, prescriptions from 2 places and the trial has not written to my dad’s GP since March. This is what he is currently taking.....

6.30 am 1 Ondansetron (80mg) {Moderator - can you check the dose please? hopefully, its 8mgs, and not 80?}

2 Paracetamol (500mg x 2)

7.30 am 1 Glucophage m/r 500

1 Creon 25000

½ mg Lorazepan

1 multi vitamin – just 100% rda of each vitamin in 1 pill

15 drops of B vitamin

10.30 1 Metoclopramide

11:00am ½ mg lorazepam

12.45 1 Creon 25000

4.30 1 Metoclopramide

2 Paracetamol

½ mg lorazepam

6.45 1 Fluoxetine 10mg

1 Glucophage m/r 500

1 Creon 10000

Times vary day to day depending on eating mood.

On treatment day 1 E-mend in morning instead of Ondansetron

1 E-mend for the following 2 days

Dexamethazone – iv followed by 2 tablets to take with the Emend but this was taken away from him on the last chemo treatments so he received no steroids due to blood sugar not being properly controlled. I am not sure this is best for him either and may not have helped excess side effects this time.

Obviously the chemo drugs as well.

His serious symptoms are foul taste, nausea, vomiting. Weakness follows this but he is not eating much and so may be hand in hand with that. He has fallen over twice and refused chemo this week so will have 3 break but there are only very minor improvements to his side effects and his last chemo was 10 days ago (with no trial drug). He is in a worrying state.

He has also tried the medical mouth washes and previous recommendations from PCUK nurses but taste is a real problem still.

Does this seem too much? Was / is anyone else taking so much? I wish we had a Macmillan nurse right now!

As ever, the vast experience of the group and the nurses would be really appreciated.

I also just feel because the taste is the major issue (and may be the cause of the nausea) it would be great to have a feeding tube or something instead as well. Not sure that would happen though.

Thanks

DG xx

Thanks Dandygal,

Thank you for your comprehensive list of Dad's meds and I do hope I can provide some solution here for you and that may also be helpful for others reading this.

Fluoxetine I believe is well known for causing taste disturbances, we have evidence of this from some other patients and on checking the BNF this is a recognised side effect. I note Dandygal that you mention the times will change obviously with Dad's routine and meal times etc, so I thought I might make a few general notes here that may also help others.

Antiemetics (for example Metoclopramide, Ondansetron) are often best given 30 mins before a meal, as this will help with any nausea that may occur with a meal. I wonder in this instance if it may help to take the Fluoxetine at the same time at the Metoclopramide, this may be worth trying in this instance and see if there is any improvement.

Great that Dad is on Creon, however these amounts are very low, and maybe one of the reasons why he has taste changes. So frequently we find that until patients are taking sufficient amounts of Creon that they poorly digested food in their gut is one of the reasons why they have the bad taste in their mouth. For those of us who are able to eat a normal diet, you may liken this to a meal that causes you indigestion and how this makes us feel afterwards, this is often the same for patients with pancreatic cancer with all of their meals.

So in this instance Dandygal, I would suggest Dad needs to increase his Creon. 10,000 (unless this is a typing error ?? 100,000 units) is not an adequate amount for a snack, so this may be one of the reasons why this is occurring.

For the benefit of other forum readers, the normal starting dose of Creon is 25,000 units with snacks and 50-75,000 units with main meals, this is titrated with each meal, especially depending on the amount of fat/protein in the meal. The recommended guidelines suggest that an antacid medication (known as proton pump inhibitor [PPI]) such as Lansoprazole or Omeprazole should be given to improve the effects of the pancreatic enzymes and this is related to the breakdown of the enteric coating on the capsule. These medications are long acting, so usually only need to be taken once a day.

Creon also should be given just before meals, so I wonder if Dad is doing this, as I note he takes several medications at the same time, this may also have an impact on its effectiveness and ultimately some of the taste issues.

Some other points to consider are :

-Ondansetron is best not given long term, normally it is given for no longer than 4 days in any one setting due to it's effects of constipation.

- You mention Dad has fallen, does this co-incide with pill taking, ie some time after taking some medications. There are many medications that can affect blood pressure especially, so this may be one consideration. Also blood sugar levels can have an effect resulting in falls, ie if blood sugar levels are low, or patients may feeling dizzy and lose balance if they are lower than would be normal for them. One of the many issues with diabetes in pancreatic cancer is poor 'glycaemic (sugar) control, and this is related to absorption of food. If the patient is also taking insulin this can be further complicated by 'erratic blood sugar levels.

- Cessation of the steroids due to the blood sugar levels - this is a common issue for many patients who are diabetic, in that the steroids will also disrupt the normal glucose metabolism and raise the blood sugar levels markedly. It would be worth discussing with oncology team to understand the reason why the steroids are given with the chemotherapy, ie is it to combat side effects of chemotherapy, improve nausea, increase effects of other medications, is it being given to increase appetite, or help with pain? Steroids are often given for any one or many of the above reasons.

This really is a simple 'snapshot' of the many issues, and as you can see they can be complex and also interwoven. If anyone has any queries related to any of these points, please do feel free to be in contact and we can explain further without going into complex detail in the space of the forum.

Dandygal I hope this may be helpful and of course you know to be in touch if you wish to discuss this further or in more detail.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK Support Service

Free phone 0808 801 0707

Email: support@pancreaticcancer.org.uk

Hi Dandy,

Was going to reply to this but Dianne has said what I was going to say.

I think if you are not used to medications, more than one looks a lot. Dad used to say to me he was having more than anyone, but he never even took a paracetamol before.

Dad was on a lot more medication, he was having a very very high dose of a lot of medication to try to constipate him. What he was having, was quite dangerous and comsultants were worried it would make him seriously ill with constipation, but he in fact never got anywhere near.

As with regards to Creon, as Dianne says, your Dad is on a very low dose. Does he not take them with food? When my Dad was forst given the Creon, the GP didn't know what they were and told him to take one a day. If you don't take them with food, they don't really work.

I would give Dianne a call, she was the one that was very helpful for me. I think your Dad definitely needs more creon, and to be taken at everytime he consumes food.

Leila xx

Thank you PCUK and Leila for your help with this. Dad has increased his Creon etc and hopefully it will help. He seems to have eaten more today and with the additional Creon perhaps I will posting some positives over the weekend. A BBQ Sunday for father's day would be lovely. x

Hi DG,

I truly hope you get your BBQ for father's day and that your Dad improves and enjoys it too.

Trevor had virtually no steroid at all whilst on the chemo regime not even the one infused with the Chemotherapy itself, as his blood sugars went very high like your dad. Ruth also stopped them as she suffered with mood swings, while she was taking them.

Just taking all the medication must be a trial for your poor Dad. take care love sandrax xx

My friend DG, that BBQ better go ahead! Remember what I have previously said about the "firsts". Well just one week after our world fell apart, my son's already had the first birthday without his day and now we have the first father's day. My son has written a card and it will go in the coffin with his dad. It will be the the last card his dad will feel.

So, in memory of all the dads out there who can't be here to celebrate their special day, I wish your lovely dad all the health in the world for Sunday. I hope from the bottom of my heart, he is able to eat, drink and be merry.

I so hope that by the time you read this message, your dad is feeling better. Let us know how that barbie went and have a sausage or three for me!!

Lots of love xx