A forum for family, friends and carers of pancreatic cancer patients

Moderator: volmod

Forum rules
Please see the messages in our "Rules" section

The posts on this discussion board are made by members of the General Public and are not intended to constitute medical advice
Fifi

Re: Trevor's Story

Postby Fifi » Sat Jan 24, 2015 12:39 pm

I really love to read when Trevor has been out in the garden, it makes me smile. Yes, saw Dad yesterday. He said if he goes to the betting shop, his face feels as though he's been injected with the Dentists needle. Does Trevor get this?

Leila xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Trevor's Story

Postby Slewis7313 » Mon Jan 26, 2015 4:22 pm

Sandra, without meaning to pick up on negatives, what is the situation with Trevor's Neuropathy? Mine is currently manageable and Oxaliplatin was removed from my regime at the beginning of November. It has not improved since then and affects hands and feet. I can still type (sort of) and can still do up buttons! Has Trevor's progressed further than mine?


Steve
X

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

Re: Trevor's Story

Postby sandraW » Mon Jan 26, 2015 8:14 pm

Hi Steve really difficult to say, to be honest Trevor's answers don't always make much sense but here goes:- He can still use a computer keypad, he is no typist but struggles with his i phone and i pad sometimes through lack of feeling, he also struggles with small buttons on new shirts, which are still quite tight. The tingling in his fingers is just the ends, but in his feet its constant right up to his ankles, he describes this as a tingly numbness! One of the tests the oncologist did was to make him stand with his feet together, his arms at chest height out in front him, and to close his eyes, as soon as he closed his eyes he fell over, luckily the Professor caught him in time.
I hope that helps, by the way, are you suffering with any problems with your hearing? as Trevor's hearing seems to be deteriorating, and Sue also mentioned her Mum was the same.
I hope you enjoyed your break, take care sandrax x

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Trevor's Story

Postby Slewis7313 » Mon Jan 26, 2015 9:42 pm

Thanks Sandra. I've asked Margaret and she confirms my hearing seems to be unaffected. My tingling is in my toes and balls of my feet, though may be spreading. It encompasses the whole of my hands, but I can still use my fingers. Did they put Trevor's Neuropathy down to Oxaliplatin?

Steve
X

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

Re: Trevor's Story

Postby sandraW » Mon Jan 26, 2015 10:15 pm

Yes Steve they did, Trevor is now on Folfirinox minus the Irinotecan, the Professor has signed him up for 6 treatments, but he has to undergo the same examination before the 3rd, and if he can continue before the 5th, to make sure the neuropathy isn't getting worse, if it is the treatment will be stopped. We are doing what we can they put the Oxaliplatin in over 4 hours to see if that helps, we are keeping everything crossed because if it is stopped gemcitabine is our only option left. sandrax x
Last edited by sandraW on Tue Jan 27, 2015 6:26 pm, edited 1 time in total.

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Trevor's Story

Postby Slewis7313 » Tue Jan 27, 2015 10:01 am

Why did they stop the iranitican Sandra? For me, they stopped the Oxaliplatin to try and help with the Neuropathy..... I am still receiving Iranitican at full strength!

I certainly hope the combination they are using helps with Trevor's Neuropathy.

Steve
X

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Trevor's Story

Postby Sueoliver » Tue Jan 27, 2015 6:09 pm

Hi Sandra does Trevor ever suffer with wind? Rumble tummy and burping? Mum was on such a high with her results now she is really low because of this problem. Sue x

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

Re: Trevor's Story

Postby sandraW » Tue Jan 27, 2015 6:43 pm

Steve think it is something to do with his bloods, not sure what exactly, but Proffesor said it needed to come out, he had 3 treatments without the Oxaliplatin, but the tumours were growing again and his liver count was rising, so it was either give this another try, or go for Gemcitabine, we know Trevor's tumours are very aggressive. just trying for extra time, don't think the treatment will help with the Neuropathy, but it if gets too bad the treatment will have to stop, end of.

Sue, Trevor's tummy is very noisy, always making gurgling noises, this was one of the symptoms he had right from the very start, he does suffer with some wind but not too bad really, Does Mum take any of the stomach tablets like Ranitodine, Lansoprazole, or similar, hope she improves soon
sandrax x

Sueoliver
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Trevor's Story

Postby Sueoliver » Tue Jan 27, 2015 9:47 pm

Thank you Sandra I will mention those tablets to her. Sue x

Fifi

Re: Trevor's Story

Postby Fifi » Wed Jan 28, 2015 9:43 am

Hi Sandra,

Sorry to butt in here. I just read about Trevor's gurgling stomach. Do you know why this is? No one has ever told my Dad why his stomach does this or what causes it? My dad's stomach makes the most tremendous noises, he sometimes puts the phone on his stomach for me to hear! Can he do anything to relieve this? Dad does have a lot of wind all the time as well.

Leila xx

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

Re: Trevor's Story

Postby sandraW » Wed Jan 28, 2015 12:15 pm

Hi Leila, you are not butting in at all, I have no idea why Trevor's tummy does this, perhaps its a question for Jenni or Dianne, sandrax xx

Slewis7313
Posts: 688
Joined: Sat Dec 08, 2012 8:48 pm

Re: Trevor's Story

Postby Slewis7313 » Wed Jan 28, 2015 4:02 pm

Sorry if I laboured the Neuropathy issue too much Sandra. You obviously have other related issues to contend with regarding the drugs. I did not fully understand the history and have perhaps been a little insensitive with my constant Neuropathy questions.


Steve
X

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

Re: Trevor's Story

Postby sandraW » Wed Jan 28, 2015 6:45 pm

Steve, please don't worry abut that, really not a problem, glad to give you any help I can, and glad you are doing so well without the Oxaliplatin. Trevor had been so well, but I think the treatment is pulling him down now. I feel because I asked if there was anything else apart from Gemcitabine, and the Prof offered this that I almost forced him into it, its just so difficult to know which way to go. If this gives him a break then its good but if it doesn't then I feel its spoiling his quality of life now, Ohhh for Nikki's crystal ball. sandrax xx

wackywacky
Posts: 99
Joined: Thu May 01, 2014 10:25 am

Re: Trevor's Story

Postby wackywacky » Wed Jan 28, 2015 7:42 pm

Oh Sandra its hard going luv, but we do it some how, thinking of you both love wacky x

jay
Posts: 407
Joined: Mon Feb 17, 2014 2:30 pm

Re: Trevor's Story

Postby jay » Thu Jan 29, 2015 9:42 am

thinking of you both Sandra x