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PCUK Nurse Jeni
Posts: 1088
Joined: Mon Jun 14, 2010 1:30 pm

Re: Newly Diagnosed

Postby PCUK Nurse Jeni » Wed Jan 04, 2017 5:14 pm

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

Re: Newly Diagnosed

Postby Veema » Wed Jan 04, 2017 5:22 pm

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
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Jan 07, 2017 9:00 am

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
X

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Newly Diagnosed

Postby Wife&Mum » Sat Jan 07, 2017 11:52 am

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
Posts: 1040
Joined: Thu Oct 31, 2013 5:38 pm

Re: Newly Diagnosed

Postby sandraW » Sat Jan 07, 2017 11:54 am

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

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

Re: Newly Diagnosed

Postby Veema » Sat Jan 07, 2017 12:01 pm

Fab...just fab!

Vx

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Sat Jan 07, 2017 1:24 pm

Peter was 9st in September and is 11st 4lbs now.

I was 8st and now thanks to skipping the gym and buying high fat/high calorie foods I'm 8st 11lbs. Now that we've sorted out how to gain weight, can we do something about shedding it too ?

Seriously, Elaine, good to hear that Pete is more positive now.
Best love
Mo

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Sat Jan 07, 2017 11:35 pm

Just a quick note to say I am so happy to read your latest post Elaine, I'm sure the steroids will help and so heartening to hear a positive GP story. Do tell the chap or your own GP that he made a difference as they do take an awful lot of flack for our unrealistic expectations.

Do keep us posted on how you are both doing and may Pete go from strength to strength

M xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Mon Jan 09, 2017 10:09 am

Sometimes the younger doctors can have a fresh refreshing insight into things I find. Their senses are not quite dulled yet from seeing thousands of cases.

I think everyone on here will empathise that the patients are the most annoying feature in trying to treat this illness. I think it should be logged somewhere that stubbornness is a side effect of pancreatic cancer. We have all been there... try this, try that and it all falls on deaf ears whilst you feel completely alone and desperate inside. I have had the same issue with dad and if the doctor visit worked then I would suggest another. PCUK always say... you can call us (probably easier on their time I know) but waving that magic independent medical professional e-mail to my dad works wonders in our case so it is another route to try if you need to.

Water is a biggie as well, once we got this in dad's head it was a big turn around (another PCUK e-mail).

I hope you continue to see improvements. Be strong my lovely, you are not alone. x

PCUK Nurse Jeni
Posts: 1088
Joined: Mon Jun 14, 2010 1:30 pm

Re: Newly Diagnosed

Postby PCUK Nurse Jeni » Tue Jan 10, 2017 12:27 pm

Great news Elaine.

So good to hear this news.

Megace is often used to improve the appetite when a person is diabetic, and cannot tolerate steroids due to their effect on blood sugar levels. Of course, it can be used to boost the appetite in any situation, not just when you are trying to avoid steroids such as dexamethasone.

Megace is a steroidal progestin - so, is a manufactured type of hormone which has a few uses in cancer care, one of these being to increase the appetite. A great call by this doctor.

I hope that it continues to do the trick and that Pete continues to eat and enjoy his food.

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

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Thu Jan 12, 2017 7:32 am

Roller coaster is on the up again for Pete. He is booked in for his chemo today. We seen a wonderful specialist Dr at the clinic yesterday who just lifted Petes spirits up and sent him on his way full of motivation. She took all the time in the world to explain fully to him about any question he asked. What a difference a persons manner can make in installing much needed hope in someone.without minimising the serious nature of this horrible disease.
He had put on 5 lbs since last weeks weigh in which has halted the rapid weight loss over the past few weeks....so that alone has built up his determination to try and eat small snacks as well as taking his supplements. ( thanks to all on here and to our nurses for all the excellent advice you gave me with regards to diet which has worked )
Off to chemo today and whatever awaits him after this session ......no doubt this week will throw up something which will have me coming on here and shouting help!
I hope everyone's roller coaster is on the upward slope today and once again thank you all.
Elaine
X

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Newly Diagnosed

Postby Dandygal76 » Thu Jan 12, 2017 8:56 am

Hey Elaine, I am glad Pete is on the up. It really is amazing how the attitudes of doctors (and nurses) can be make or break these situations. I know it is a delicate balance of realism v hope in this disease but just being a little more positive can go a lot further in treatment than many tablets they can offer for side effects. I am so glad Pete is putting on weight, I have found when they do not eat one of the worst side effects to endure.

I hope chemo goes okay today and whatever this week brings... yes we are all here willing you on and hoping we can help. x

Marmalade

Re: Newly Diagnosed

Postby Marmalade » Thu Jan 12, 2017 11:07 pm

So pleased to hear this Elaine and glad that Pete is feeling less depressed by the situation, all these things help and as does time to get over the initial shock!

Look after yourself too and take advantage of the ups when they occur.

Much love M xx

Elaine123
Posts: 204
Joined: Tue Nov 29, 2016 6:49 pm

Re: Newly Diagnosed

Postby Elaine123 » Sat Jan 14, 2017 9:18 am

Well Pete got his chemo on Thursday and he was delighted to be back on track again. He was wiped out on Thursday night as there was hold ups at the chemo unit and we were there for most of the day and by the time we came out it was snowing and icy roads so it was quite a hazardous and time consuming journey home. However he got up on Friday morning full of the joys ate breakfast... done his injection... took his pills...put on his dvt stockings and proceeded to go out and fix the outside lights which had gone out last week. I couldn't believe it neither could the neighbours who seen him at his lowest last week. He is still in bed as I write this so don't know yet what today will bring but it was lovely yesterday to have the old Pete back to normal Even if it was only for a day. I have decided that instead of my usual waiting on the roller coaster being on the downward slope again just to savour what to us has come to be a NORMAL day. I hope everyone has a good weekend . Take care
Elaine
X

Justamo
Posts: 468
Joined: Sun Sep 04, 2016 10:38 pm

Re: Newly Diagnosed

Postby Justamo » Sat Jan 14, 2017 11:09 am

Great news Elaine. It's good to really appreciate the good days on Planet PC.

I remember back in September explaining to some of our neighbours about Peter's diagnosis and solemnly receiving their sympathy. They watched as I helped my 9st invalid to the car and I almost expected to see flowers tied to our gate when we returned from yet another consultation with Mr Bogeyman.

Now he looks like the picture of health. He adopts a limp, when he remembers, after he's had chemo (no, I don't know why either), but otherwise he's apparently fit and healthy. Maybe the neighbours think I was preparing to start one of those fundraising scams that have gained popularity ?

Now most of them think he's 'cured'. Come to that, he thinks he's nearly cured too and is planning an assault on the golf course as soon as the snow is gone. We'll leave it like that for now.

I've re-read some of your earlier posts Elaine. They were full of despair. Now you are seeing the other side and sharing it with us and for that I thank you. I hope your Pete and my Peter continue to have good days.

With love, Mo