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sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby sandraW » Sun Aug 02, 2015 1:36 am

Hi Martine
Sorry the results for Allen's scan where not good, this bloody awful disease, its unrelentless. The same thing happened to Trevor, the chemo reduced the size of the tumour the first time round, but the second lot did very little and his tumour markers rose quite dramatically. I know Didge has said it almost seems as though it causes the tumour to grow after the first lot of success.
I just hope you do get some good news at the next scan, take care sandrax xx

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby Didge » Sun Aug 02, 2015 9:05 am

Hi Martine, sorry about your bad news. Rob also tried the phoenix tears which apart from anything else was great for pain relief. He also tried numerous other stuff including apricot kernels but I found it impossible to get him to take anything regularly! I do hope what you are doing helps if even to slow it down or reduce pain. Rob also investigated drug trials although there was nothing suitable at the time. You have nothing to lose at this time and when the hospital says 'nothing we can do' I think it gives a person a bit of hope that they are doing something which could help. There is no such thing as false hope in my book. Xxx

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby knutsford4 » Sun Aug 02, 2015 9:55 am

Thanks Sandra & Didge
This is our last hope, were Allen has been so strong and positive, the Phonix Tears gas change his personallity, he's quite and where he could talk for Ireland we have no conversation, he's nervous and unsure, not the confidant man I have bee with for 34 years, my heart is breaking like pain I have never felt before, I'm trying to be strong, it's very hard to talk to anyone as I just cry and people get actward, spoke to the District Nurse yesterday, on my own she said if the oil doesn't work we r looking at Allen not been here at Christmas, oh sweet Jesus please make the oil work x

Bowie
Posts: 115
Joined: Sat May 03, 2014 10:35 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby Bowie » Mon Aug 03, 2015 12:26 am

Dear Martine, I am so sorry to hear your news, this cruel, evil disease is so hard to cope with and it changes people, not just physically. I hope things are as good as they can be and sometimes things do work out better than you expect. Sending you both all my best wishes. Fiona X

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby knutsford4 » Tue Aug 04, 2015 5:55 am

Thanks Fiona
Life is truly a rollercoaster, some days he is good and other days he's out of it, we r putting all our hope in the Phoenix Tears, my cousin had his last appointment with his doctor yesterday and was told, " keep Doing what your doing," after an operation, chemo and radiation, then being sent home with 3 months to live, his 8cm tumour in his temple lobe has disappeared,
He was using Phoneix Tears, so we are praying really hard it works for my Allen

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby knutsford4 » Sat Sep 19, 2015 8:33 pm

Hi I know it's been a while, could someone help me ASAP, Allen has been vomiting every day now, and has diarrhoea, his food is not breaking down he's on 75g Creon a day should he up his dosage, we haven't seen the GP in quite a while, and the hospice nurse has not been back for about 5-6 weeks, Allen is using Phonix Tears, so we are really on are own now, he gets his results on Monday, xx

Fifi

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby Fifi » Sat Sep 19, 2015 8:52 pm

Hi,

Sorry to read Allen isn't very good. Creons are enzymes, not medications. He can take as many as he needs. He cannot overdose. How is his appetite? How often is the diarrhoea?

Leila xx

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby J_T » Sun Sep 20, 2015 12:17 am

Get your GP out pronto, likewise Macmillan or equivalent. 75g creon isn't enough. Might be worth a chat with one of the nurses here too on Monday.

Julia x

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby knutsford4 » Sun Sep 20, 2015 12:31 am

Leila, appetite not great, diarreira a week now, Julia hospice nurse hasn't been out in 5-6 weeks cos Allen taking Phoenix Tears,

Fifi

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby Fifi » Sun Sep 20, 2015 9:29 am

How often in the day is the diarrhoea? Is it yellow?

WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby WilliamS » Sun Sep 20, 2015 9:45 am

This is what one of the nurses wrote about Creon on another thread:-

"The normal pancreas produces up to 720,000 units of enzymes (lipase - one of the enzymes, but also the others as well), and that we need about 10% minimum of this to digest a meal properly (this is a normal meal! ) = 72,000 units of enzymes. If the meal is fattier, you need more.

All of our information also states that you can't overdose on this and that there is no "upper limit" dose, so basically, he can take as much as he needs to correct his symptoms and halt the weight loss.

If his symptoms are not improving, and he carries on losing weight, then he needs more. Please take more rather than less - he will not harm himself at all.

Kind regards,
Jeni."

Hope this helps and that the symptoms can be relieved a little. Best wishes.

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby sandraW » Sun Sep 20, 2015 12:30 pm

Hi Martine,
No different advice to offer, just wanted to let you know I am thinking of you and Allen, hope he improves soon, take care love sandrax xx

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby knutsford4 » Sun Sep 20, 2015 6:05 pm

Thanks everyone, he has increased his creon, he has diarreira at least 5 times a day and yes it's yellow fifi

Fifi

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby Fifi » Sun Sep 20, 2015 6:49 pm

If it's yellow then he definitely needs more creon. The fat isn't breaking down. Try and get him to keep sipping water to keep hydrated. You can up he creon considerably.
If the creon still doesn't work, try opening it up and sprinkling it in mashed banana or apple sauce, but it jeeds to be eaten within 20 minutes at the most for it to work. It activates the minute you open it. Is he taking codeine as well? That can help with diarrhoea.

Leila xx

knutsford4
Posts: 45
Joined: Sun Sep 28, 2014 3:24 pm

Re: ITS BEEN A WHILE--THE LOVE OF MY LIFE HAS CANCER

Postby knutsford4 » Sun Sep 20, 2015 7:48 pm

He takes the creon just before he starts eating, Leila no codeine because he's dose is just 25g per capsal, he takes one with each meal which is a total of 75g per day, I told him to up his dose, today he took 50g with his dinner, just in and he threw his dinner up, I'm trying to get him to take one every time he consums ant sort of food, x