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RLF
Posts: 227
Joined: Tue Nov 19, 2013 9:30 am

Re: Trevor's Story

Postby RLF » Wed Dec 31, 2014 12:03 am

Good luck on getting a speedy scan, I hope the wait isn't too long for your both. I think a shrinking tumour on the scan is a good sign, markers are not always the best indicators and I read they can go up sometimes when cells are dieing and their tissue is being released.

It's great that he's well and has no pain, he's lucky to have you looking after him! Also don't worry about the profs demeanour, people can be having an off day and you might be picking up on something that is totally unrelated to you.

Keep us updated.
Rob x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Trevor's Story

Postby nikkis » Wed Dec 31, 2014 9:20 am

Hi Lovely Sandra,
You are doing a grand job there, keeping on top of things, and as Rob says tumour shrinkage can only be a good thing. Paul's liver levels have been high for most of this year. Every now and then a new nurse wil say they are a worry and put me into a panic, but then when I speak to the senior sister or his consultant they say they are not worried, they say they are abnormally high due to the chemo, but they are not something they concerned about.
Best wishes for the New Year to you and Trevor too.
Love,
Nikki

Fifi

Re: Trevor's Story

Postby Fifi » Sat Jan 03, 2015 2:02 pm

Hi Sandra,

Good news on the shrinkage. That is the main thing. I understand that it is upsetting when the tumour markers show no change, or rise, as I get upset about that myself. In comparison though, it is the tumour shrinkage that means the most, and that should be focused on. How does Trevor feel about it? I hope he isn't too down, and that you can help him feel positive.

All the best Sandra.

Leila xxx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Wed Jan 14, 2015 1:57 pm

We were lucky and got an early scan on Tuesday 6th as the scanner had broken down, but was repaired quickly so they rang round offering cancellations, rang the professor's secretary straight away, she said there was no hope for an appointment for the 12th, but then rang to say there was one after all.
Saw the "man" on Monday, to be told that there was no point in carrying on with the present treatment Folfirinox minus the Oxaliplatin, as is wasn't working, but... tumours hadn't grown much but we had only had the last scan seven weeks earlier. He then suggested we should try gemcitabine, I know that's the last resort so I asked, notice its me doing the asking, if there was nothing else we could try first. The professor is worried about Trevor's neuropathy, so after giving him a thorough examination, and explaining that his score is 2 already I think the worst is 4, he will allow him to have 6 courses of Folfox, monitoring him very closely regarding the neuropathy after every 2 treatments,his tumour markers have not come down, didn't ask the numbers as didn't want to know, but the prof says Trevor's do shown a good insight into what's happening with him regarding tumour growth.
So this week has been a week off in regards to treatment, in himself Trevor is remarkably well, he is eating well and has minimum discomfort,for which I am truly thankful,we have obviously been very down, but are starting to pick ourselves back up again ready for the next battle, but I do worry about the neuropathy, he couldn't cope if he needed a wheelchair.
One more point, we are so lucky to have our unit, last Thursday Trevor woke with a temp of 38.5, I rang the unit, they said to come straight in,there was a bed waiting in the day unit, within 5 minutes one of the nurses came to take bloods followed 15 minutes later by the Dr, within another 15 mins he was having intravenous antibiotics, and a bottle of Paracetamol. Dr came back to see him a couple of hours later to say his bloods were fine, and that someone else would come to see after a further couple of hours of monitoring, they did and let him come home, with antibiotics at about 3.30pm, and people knock our wonderful NHS. love to all take care sandrax

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Trevor's Story

Postby Didge » Wed Jan 14, 2015 3:30 pm

I now see your update, Sandra! We were on gemcitabine first and Rob couldn't tolerate it, got so many infections, at one stage talking about possible amputation for cellulitis. Although he did not have the immune boosting injections at that point as it was 'only' adjuvant. Glad to hear Trevor is feeling pretty good apart from the neuropathy though. xxx

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

Re: Trevor's Story

Postby J_T » Wed Jan 14, 2015 4:59 pm

Great to hear the update Sandra and that Trevor is relatively well. Hope the Folfox does it work.

Best wishes to you both.

Julia x

nikkis
Posts: 513
Joined: Mon Jul 08, 2013 8:29 am

Re: Trevor's Story

Postby nikkis » Wed Jan 14, 2015 7:33 pm

Hi Sandra,
Just wanted to say a quick hello, and I am so glad to hear you are getting such excellent care. We are having our own fun and games at the moment, I will update when I get a chance.
Lots of love,
Nikki

PCUK Nurse Jeni
Posts: 1106
Joined: Mon Jun 14, 2010 1:30 pm

Re: Trevor's Story

Postby PCUK Nurse Jeni » Thu Jan 15, 2015 10:27 am

Sandra,

That unit is amazing! This is truly brilliant treatment - yes, you are lucky indeed to have this and the efficiency in which they dealt with Trevor.

Good to hear that Trevor is well in himself right now - keep on doing what you are doing.

Take care,

Jeni, Support Team.

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: Trevor's Story

Postby Ant11 » Thu Jan 15, 2015 12:22 pm

Hi Sandra

I have been following your story and just wanted to see how Trevor is doing. Hard as it may be try make time for yourself too. Sending hugs and strength your way. Annette x

Cathy
Posts: 788
Joined: Fri Mar 15, 2013 5:43 pm

Re: Trevor's Story

Postby Cathy » Thu Jan 15, 2015 10:09 pm

Hi Sandra

Glad Trevor is feeling pretty good.

Just for info, when Jonathan was to go back onto treatment (he'd been on folfironox) he was offered gemcitabine as a second line but the Onc agreed (after I'd asked) to offer Gemcap instead. Saying that, I believe that gemcitabine can be very effective for some people on its own.

Keep on keeping on

Cathy xx

Fifi

Re: Trevor's Story

Postby Fifi » Wed Jan 21, 2015 5:50 pm

Hi Sandra.

Dad had Gemcitibine first ( with the trial/placebo). He tolerated it really well until his last cycle. He was 2 stone lighter then as well. His scans always came back good, apart from his last one obviously. I know it's horrible because it's a "last resort" chemo, but not necessarily it isn't. Trevor could tolerate it brilliantly and it could work so well. I do know that this is easier said. From what I've read of Trevor, he's one stubborn tough cookie, and that's what we need right?

Leila xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Thu Jan 22, 2015 12:14 am

Hi Leila
Stubborn yes well that's one word for it lol, I think it's after that, there is nothing else that just frightens the life out of me, but I do agree, people have done well on it, thanks for that sandrax xx

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

Re: Trevor's Story

Postby Sueoliver » Thu Jan 22, 2015 6:42 pm

Hi Sandra I noticed you wrote that Trevor was hard of hearing since treatment! My mum has gone so deaf! Do you think it could be the chemo? She is getting worse and has the television on so loud it gives me a headache! Sue x

Fifi

Re: Trevor's Story

Postby Fifi » Thu Jan 22, 2015 6:54 pm

Sue, yes this is what Sandra said to me about Dad. I call him up, and all I can hear is the TV. I really think Sandra is right with this.

I see what you mean Sandra. I often think about further down the line, and I just cannot imagine the feelings. People tell me to think about the here and now. I do, but I don't and I picture the worst things sometimes, and I just hate myself for it. You are wonderful Sandra, and Trevor is wonderful. I want to read again, that Trevor has gone down to his shed to get some piece and quiet. That's how we want them isn't it?

Leila xx

sandraW
Posts: 1047
Joined: Thu Oct 31, 2013 5:38 pm

Re: Trevor's Story

Postby sandraW » Thu Jan 22, 2015 11:25 pm

Hi there ladies,
Sue Trevor is on different combinations of the folforinox regime, as your Mum is. I think? I read somewhere that it did effect some people's hearing, but not really sure if I imagined it or not, but Trevor is definitely getting more hard of hearing, if it is effecting your Mum too it seems it well might. xx
Leila, thanks for being so kind but i think we all just do the very best we can for our loved ones, today it was the garden not the shed, he took himself off too, he did some tiding up and weeding, it was really cold but he was well wrapped up. Came in complaining he had only been out there a couple of hours and he was nick nacked, sat down and went to sleep for an hour, so nothing changes, are you seeing your Dad this weekend? sandrax xx