Newly Diagnosed

[Veema]

Right...if you need to get his weight up, you need to ask the GP for the following:

Procal powders...adds calories and protein to anything (except water and juice) without changing taste or texture. What Mo has said about cream and everything is great and will get the calories in and the weight up, but Nige couldn't tolerate the clagginess of rich, creamy stuff.

Scandishakes...a complete nutritional shake, which actually taste reasonable, rather than the fortisip things...add the procal to this and it's hugely calorific.

Have a look online for NIDO milk powder...it's a full fat milk powder that can be added to stuff, unlike marvel or supermarkets own brands which are made with skimmed milk...this is a good alternative if you can't get hold of the procal stuff off the doctor. Some tescos have it apparently, but I could never find it.

I think they should have given you a dietician if they think his weight is a problem...but if you do get a palliative care nurse, they should also be able to put you in contact with a dietician. The trouble lots of PC sufferers find is they actually don't feel like eating at all, which is so frustrating when you know you've got to get the weight up. In the mean time, just try and get him to eat the most unhealthiest food you can think of.

He's lucky that he's getting Abraxane as well as Gemcitibine, together, they have a good track record and there's every chance it will shrink the tumours and keep it at bay.

Good luck with the weight...we've all been there, we know the battle...and try and have a lovely christmas.

Vx

[Elaine123]

Merry Xmas everyone I hope you all had a lovely day as far as you possibly could given all our circumstances.

We knew our usual family Xmas was not possible this year but we went ahead and made all our usual preparations ..the Xmas table and the Xmas dinner and our usual present opening mayhem but it was difficult for everyone . Pete was quite unwell and had to go to bed before dinner I think it was a mixture of seeing the food and having to take part in what used to be the highlight of his year and all the uncertainty of the future.

I am just so happy it is all over and we can concentrate on the next stage of his battle. He has had a difficult week his appetite is practically non existent and he doesn't seem to able to drink as many fluids as he was previously taking. He also is very weak and just sleeps away most of the day. He has the oncology centre this wed and his chemo commences on Thursday but I am fearful he won't be fit enough to take the chemo. Thank you to everyone who has given me advice on how to build up his weight but he is not eating at all so unable to get the all important nourishment into him. He is just so sad looking and although the GP has given him anti depressants they won't kick in for a few weeks yet. He has been so anxious to start chemo and feel as though he is at last fighting back but with his recent weight loss we are just hoping against hope that he can be given it. The chemist has ordered the protein shots for him but due to the holidays we won't collect them until Wednesday. I am hoping them being just a small drink he will be able to take them..

Once again thank you to everyone on this forum and I have now worked my way through most of the comments and peoples records of their own personal journeys and you have all given me hope .

Elaine

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[Justamo]

Hello Elaine, sorry Christmas was a bit strained.

I did notice with my Peter that his taste changed almost as soon as he had his first symptoms.

Really odd things, like wanting me to buy HP sauce instead of tomato ketchup. He stopped using mustard. He suddenly went completely 'off' salad and raw veg of all kinds. His all time favourite for snacks, smoked mackerel pate, was suddenly shunned. He said lots of things tasted 'funny'. After 40-odd years of cooking for him I just didn't have a clue what to serve for dinner.

Up till a week or so ago his appetite was good but now it's waning again. Maybe when your Pete starts his chemo things will improve. Veema has lots of experience with diets and I would go with her advice if I were you. And if the antidepressants lift his mood a bit then he may feel a bit more like food.

Take care

Love Mo

[Veema]

Nige went off anything that had a vinegary taste, so ketchup, salad cream etc, but he liked rich meaty gravy tastes and ate a lot of liver, casseroles etc that had gravy because things were too dry for him otherwise. He also liked cereal, so lived on frosties, branflakes and things like that...but this was only whilst he had chemo, he ate ok when not having chemo. Think I mentioned on another thread about juicing...get yourself a nutriti ninja or something similar and juice things. Mango, pineapple, banana, spinach and kale is our favourite, with almond milk and a handful of nuts...you can also put a huge dollop of coconut oil (brilliant for alsorts) or peanut butter in there.

But, if he's not wanting to eat, there's not a lot you can do. Towards the end, I just let him do what he wanted and stopped forcing him, but Peter isn't at that stage yet and you need to impress on him that he isn't going to be able to fight this unless he keeps his nutrition up and gets his weight back up...that you understand he feels crap and not wanting to eat, but there's only so much you can do...if he doesn't want to fight it, that's OK and you'll support him...sometimes a few hard truths are what's needed to shock them into doing something. You can't force him to eat, he needs to see for himself that not eating is not going to get him anywhere...maybe them not giving him his chemo this time might be what he needs to get him to understand that.

Good luck with it...I understand the frustration...the supplements might help.

[Elaine123]

Hi Veema thank you for your reply ....There has been quite a change in Pete today apart from still not eating he has been on the sofa all day just drifting in and out of sleep. He looks so different today , as if he has become frailer overnight....he said he's not in pain . There just seems to be a gradual change all day. He is looking forward to going for his blood tests tomorrow as he starts chemo Thursday and as I said before he cannot wait to get chemo as he said he will then feel as though he is fighting back. The liaison nurse starts back at work tomorrow so I will ring her first thing in the morning and explain the downward turn Pete has taken. I am just so worried tonight and feel quite shocked at everything changing over two days. Can anyone advise me if this evil disease can worsen so rapidly.

Elaine

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[Justamo]

Hi Elaine. Sorry Pete is not eating, it sounds as though he's quite weak. You will have heard people on this forum talking about roller-coasters. PC patients seem to go from good to bad and back again in 24 hours.

Might be wise to encourage Pete to try to eat because if he's really weak then his blood might not be good enough for the chemo to go ahead, and that would be quite a blow for him. See if you can get him to take a Scandishake with Procal in it as Veema suggested.

On Christmas Day Peter told me he was losing his appetite. Today he ate everything in sight and finished the day off ten minutes ago with a huge lump of Stilton cheese with biscuits. His appetite vanishes and then returns with a vengeance - I'm either freezing uneaten meals or rushing off to Tesco to get something he 'fancies'.

I do hope he feels a bit better tomorrow.

Love, Mo

[Proud Wife]

I hate to disagree with my friends on here but I was told in no uncertain terms not to force hubby to eat or make a big deal about food. It's not that Pete doesn't want to eat, the nature of this beast probsy means he can't eat. To force food on him could make him worse. My hubby became almost skeletal on diagnosis and before chemotherapy but as soon as he was put on steroids and anti sickness medication....metaclopramide from memory, he regained his appetite and eventually 4 stone. I'm so very sorry you are having a tough time at the moment. If you can get Pete to sip on the high cal protein shots regularly that might help, they are very calorific.

No-one can predict how this disease is going to turn, and that is so hard. Try not to overthink things because it will drive you bonkers. You also need to take good care of yourself because it will take its toll. Just remember we are all here for you and understand what you are going through. I'm typing blind on a phone that's not showing me the text I'm writing so I hope this all makes sense.?!!

My lovely Mo, please do join us over on facebook. We have lovely conversations about such random things. It helps escape reality for a very short while.

Elaine sorry to hijack your thread, I am away and it's hard to post anything longer than about 10 words but I hope you find Pete brighter tomorrow. It can happen, you'd be surprised at the twists and turns.

Can I take this opportunity to wish every single person on here a better 2017 than 2016. Somehow it doesn't seem right to wish one another a happy healthy new year when we are all members of the club no-one wants to join.

Much love and prayers for peaceful times ahead xx

[Veema]

We were told exactly the opposite...that he needed nutrition of some sort, hence the shakes etc. It was only the last 2 weeks where we stopped trying to get him to eat...even then, Nige tried forcing stuff down because he thought he'd get better enough for more chemo.

Elaine, it absolutely can go downhill so quick, but he could also just be having an off couple of days...could have a cold brewing or something else...it also feels so much worse when we can't get in touch with anyone for reassurance with it being the holidays. Try to keep positive...have everything crossed that bloods are okay today for chemo to start tomorrow.

Vx

[Dandygal76]

Oh Elaine... hopefully the chemo will help as once started it can ease the cancer symptoms but if your read my thread you will also see that dad went to hell and back on Abraxane and so you must come back with any symptoms because I swear my dad had every one of them and we came through the other side to a good quality of life on it. I do get what you say about 'fighting back' mentality.. it is brutally cruel how long PC sufferers are made to wait for treatment when they want the chance to fight back.

I will also go inbetween on the advice re eating. Just find high calorie foods that pack a punch and even a teaspoon will make a difference. I was amazed what my dad survived on but don't waste a spoonful if you can get high calories food... nuts, eggs etc are all good (and drizzle everything wth olive oil). The most important thing though is water and once he knows that by taking the water he will dilute the chemo, flush it out and feel better it gives him a good aim to drink it.. getting water intake will be very helpful around the chemo otherwise the chemo is just sitting there and making him poorly if he does not drink.

Dad only once had a chemo break and he was in an awful state so hopefully you will be surprised today and he has had chemo.

Let us know how you get on and I am sending you both cyber hugs and thinking of you. With the new year brings new hope. x

[Elaine123]

Thank you all so much for your very welcome advice and support I was extremely worried when I wrote the post and again you helped to allay my fears. Yesterday went well and they are starting Petes chemo today. This gave him a real pick me up to the extent that he is taking the shots. He was so tired by the time we had made the round trip to the hospital that when we came home he got straight out my sons car and by the time we got into the house after him he was flat out on the sofa still with his beanie hat and coat and boots on and sound asleep. We just put a throw over him and left him to sleep for three hours. He is always cold just now so the heat did not affect him . They are going to include an anti sickness drug and a steroid with the chemo as you had told me so fingers crossed they should make a difference.

The only one complaint we had yesterday was that the nurse at the clinic repeatedly made a point of telling us that the chemo would only give him a short time and that this cancer is life limiting ....we know that and the more she said it the more agitated Pete was getting , if she continues in that vein at the next clinic I will have to ask to speak to her about it....I am not usually confrontational but I feel that Pete is trying hard to be positive and seems to be overcoming his fears a bit more and doesn't need reminding of what's ahead. Am I wrong ? Or am I just over reacting.?

Roll on today's chemo as he is so eager to start it is giving him hope which up til now he has not had and as I'm sure you will agree the mind is a wonderful thing that can move mountains so we want to encourage that hope.

I am prattling on now but after fearing we were losing Pete last night today the roller coaster is on the up again. I cannot thank you all enough for your support in the midst of your own battle with life right now. Take care

Elaine

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[Didge]

Dear Elaine, no you are not over reacting and I would have a word with this nurse or someone in charge before it happens again and not wait! At our hospital it was the other way round. It was a cancer hospital and they said "we take it one day at a time here". Take good news when it comes and don't look too far into the future. Hope all goes well today x

[Dandygal76]

I ditto Didge. I always tell people not to look into the abyss - one day at a time is the best mantra. The trial dad is on are always positive towards the future and that really helps him and I would not have someone ramming negatives down their throat. They know the score already and that it is life limiting for nearly everyone and they need the opportunity to process this information in their own way, whether that is fighting back or coming to terms with alternatives. I would also have a quiet word - it does not have to be confrontational to ask her to stop. x

[Veema]

I agree...she needs to stop saying things like this. You're not stupid, you know the score...she doesn't have to keep going on about it.

Good luck today,

Vx

[Ruthus]

Dear Elaine

I am furious the specialist nurse has repeatedly informed your husband about his life expectancy with or without chemo. She really does sound insensitive and I think individuals should be asked if they want this information before it is given. I know when I was diagnosed in November 2015 my own googling gave me the prognosis of 6-12 months. Unbelievably one of my work colleagues had just been diagnosed with stage 4 PC a couple of months before and he was given 3 months. This was in August 2015. He responded well to Folfirinox and is now on a different chemo. He is still here and working!!

When my Oncologist asked if I wanted a prognosis I said no because I knew what he would tell me. Yes I know statistics are based on science and outcomes but there are a wide range of variables. Each of us are individuals and absolutely no one, not even the most experienced Consultants can tell us how long we have left. I also personally believe that the statistics are now out of date. It takes a good few years for clinical trials to be run and yield their results. Folfirinox and abraxane have only been used more commonly over the past 5 years and I don't think these statistics have been accounted for. (I could be wrong!). I am now 14 months post diagnosis. It's not easy but most of the time I'm living my life to the fullest I can.

Personally I would say I found it psychologically much more difficult after I was first diagnosed. The shock and fear of facing such a terrible diagnosis. I cried regularly for the first few months. However with a combination of medication, support and acceptance I've reached a "new normal"! Life is very different but I still walk and cycle which I'm grateful for.

I hope this gives you and your husband some hope and positivity. Love Ruth xx

[Elaine123]

Thank you Ruth for your positive reply ...Pete got his first chemo yesterday and was totally shattered all night although he didn't have any adverse effects. He is again wiped out today but he has taken two coffees and one of the Procal shots , so that is a start. I also had a word with our clinical specialist nurse about how Pete reacted to that phone call and she agreed it was totally wrong also the life limiting lecture we got at the clinic. She agreed that from now on there would be more consideration given.

Like you I think most of these statistics they throw out to people are way out of date and do not reflect any progress made in the past five years.

Thank you for sharing your own fight with us and I am delighted you now are living a " new normal " what a brilliant way of putting it. You are so right also that those first months are just a blur of shock stress and really difficult thoughts going round your head.

Like you I think Pete will be able to move past that eventually and find his new normal. He GP has given him an antidepressant which once it takes effect will lift his mood. I wish you all the best for the new year. Take care

Elaine

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[Proud Wife]

I totally agree with your final paragraph Elaine and once the anti sickness and steroids work their magic, hopefully you will be seeing a much better Pete. Remember to take care of yourself too please xx

[Guest]

Dear Elaine,

So sorry you and Pete have had a bit of rough time but its lovely that you have found some support on here and that you have found the confidence to address the crass communications of the medical staff. Sadly many either choose to ignore the diagnosis or it is never explained to them properly so busy bodies like this think they are best equipped to reinforce the grim details. This forum is littered with this sort of incident and there is really no excuse for it.

On to better things. Pete has started his chemo which is no picnic but further than you thought a few weeks back, he has his antidepressants which do really help, he will cope a little better and you will feel better because he does. Yes, normal keeps moving but we adapt and we gradually leave behind the dross and things that don't really matter and use our energy having the very best time we can.

I wish you both a restful weekend, try not to worry about next week or next year, none of us know what it will hold. Chin up, live for today, crack open the champagne and dance tip you drop or whatever pleases you both. What pleases me is a DVD of the Victorian Garden and a cup of red bush tea but each to their own as long as you enjoy it.

Always in my thoughts,

M xx

[Justamo]

Elaine, you sound like a different person in your last post. So positive and together. Planet PC does that to us; it makes a calm rational person turn into a gibbering wreck, but it all changes again in 24 hours. My policy is to enjoy the 'up' times and deal with the bad times as best I can.

And Marmalade dear, much as I hate to lower the tone, I would rather have a large G & T (2 bits of lemon and no ice) with my DVD if that's OK.

Take care

Love Mo

[Elaine123]

I haven't been on over the past week as it was a busy time , the kids being off work on holiday spent a good bit of their time here which was lovely but tiring. We were at the clinic today to have Petes bloods taken and see the doctor. They said his chemo can go ahead tomorrow. I am surprised as he has really went down this week and has practically slept twenty out of twenty fours every day since his chemo and with not eating he is skeletal now and he just looks so frail and weak. It is so horrible to watch this loving energetic man reduced to how he is by this horrendous disease and all in the space of six weeks. Is there any of you can give me advice as to whether you can come back up again after being so weak and frail. I cannot imagine there is any road back from this or that the chemo can overcome this setback. Thank you all so much for just being here .

Elaine

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[Elaine123]

Just as I pressed to submit the post the phone rang and it was the hospital to say that Petes chemo is cancelled tomorrow as his bloods are low. I asked for an explanation but don't really understand it could this be because he is not eating ? To be honest I think the trip to the hospital tomorrow would have totally floored him. Is this a bad sign or does it happen quite frequently to people. I am sorry to ask so many questions but just feel totally useless today and do not want to jump to conclusions based on worry when I really don't know much about the ups and downs of chemo yet.

Elaine

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[PCUK Nurse Jeni]

Hello Elaine,

I have replied to you via email.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[Veema]

Did they tell you what was low? When they take bloods they look at potassium, sodium, calcium, neutrophils, haemoglobin, white blood cells etc and no doubt loads of other stuff...Nige often had low sodium, potassium or calcium, but it was always just enough to enable him to have chemo. The not eating will really not help getting the bloods back up to a level where they can go ahead with chemo...bananas and other fruit are really good for potassium and calcium...lots of dairy for calcium and sodium is in most things. Napolina tinned plum tomatoes are supposed to be really good at keeping the neutrophils at a good level. And if it is sodium, calcium or potassium, you can get supplements to help...my auntie is currently taking calcium supplements whilst she has her chemo.

I think I mentioned in a previous post that I made Nige a green smoothie every day whilst he was on chemo and he never missed a treatment...get yourself a nutri ninja / nutribullet thing and make him some juices...they are really good for all sorts of things too...iron, reducing toxins, immunity...it's worth reading up on them and seeing if he'll be able to stomach even a small glass.

If I could post some pictures on here I could show you Nige when he was diagnosed looking all yellow, frail and skinny and Nige 6 months later looking the picture of health just a couple of weeks after his surgery. It is possible to come back from such a position, but it does depend on lots of things...disease progression, general health, willpower too.

If you contact the nurses, I'm happy for them to pass my e-mail address onto you and you can contact me directly if you like...

Vx

[Elaine123]

Thursday the day after Pete was told he was not having chemo this week I became so worried about how he was looking that I called in the doctor. Along came this young man who immediately took off his coat and sat down and engaged Pete in conversation about how he was feeling. He looked as though could barely have been out of medical school.

He then proceeded to give him a thorough examination and told Pete exactly what everyone one else has been telling him. He also gave us a prescription for Megace to promote his appetite ( anyone know anything about this )

.The doctor was only two minutes out the door and Pete said I know I am going to hate this but I am going to eat and he has proceeded to eat very small amounts and has stopped sipping water and is gulping down cans of juice which are full of calories. Dr advised 2 pro shots a day and whatever else he can manage to eat even very small amounts. He was refusing the pro shots up to then.. After he had gone Pete seemed motivated and determined he is going to be fit for chemo. He has lost so much weight and is so frail I thought there was no way he could turn this around but I witnessed a minor miracle.

Following on from that in my excitement at Pete being energised I forgot to restart the Creon before his snacks , resulting in two accidents one after the other which Pete got so upset about. I then thought I had blown it and he would slump back to his previous lethargic state, but he is still determined.

They say Angels come in many disguises ours came in an oversized winter coat , a crazy multi coloured Nordic hat, and spectacles that were two sizes too big for him.

Elaine

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[WifeampMum]

So pleased to read your latest post Elaine, fantastic that Pete is taking nourishment again, it will help enormously I'm sure.

I'd not heard of Megace so I did a quick Google just now and it's a steroid. These are very commonly prescribed to improve appetite during chemo so Pete is treading a well-worn path. Hopefully they will really make a difference for him. And once the antidepressants kick in, they will probably boost his appetite as well as his mood. So hang on in there, and well done to that young doctor!

xx

[sandraW]

Elaine,

That is great news, sometime the young doctors, even as you say, look as though they have just left school, have that amazing bedside manner.

After his operation (not a whipple as his cancer was in the tail of the pancreas) Trevor found it difficult to eat and just wasn't hungry he had lost a good 2 and a half stone by this time. I used to put a small amount of food in front of him and say you are not leaving the table until you have finished it, as we used to say to the boys when they were growing up. Strangely it used to work he used to say I don't really want this, but my reply was "you will never feel any better unless you eat, you know that" luckily after a few days of eating he did slowly get his appetite back. I understand that Pete is in a different position to Trevor's but it is so important that he gets lots of nutrition.

Trevor had porridge with double cream for breakfast, lunches were a bit of a problem as he wasn't

a sandwich man, but he really enjoyed pasta, so I made lots of creamy sauces, then a cooked meal in the evenings with butter and cream in his potatoes, he liked the ensure but found them too big, he found he quite liked the Fortisip compact and would at the start have 3 a day cold, straight from the fridge, and they didn't fill him up too much, so he could still eat his meals. We were lucky too that he didn't have problems with his bowels, he always took his creon but they had managed to leave a third of his pancreas intact and that third seemed to work well, so we were never sure if he actually needed them or not.

I do hope that slowly but surely Pete manages to gain some weight, as he will feel and look so much better if he can, when Trevor had lost his weight he used to look in the mirror and wail saying "I don't look like me any more" gaining the weight, helped to give him back the feel good factor. take care love sandrax xx