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

Re: Trevor's Story

Postby RLF » Mon May 19, 2014 11:41 pm

Congrats on the good news! Long may that continue :)
Rob
x

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

Re: Trevor's Story

Postby jay » Tue May 20, 2014 4:38 pm

fantastic news, have a fabulous holiday
love jayne

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

Re: Trevor's Story

Postby PCUK Nurse Jeni » Wed May 21, 2014 10:18 am

Have a wonderful time away , Trevor and Sandra.

Jeni, Support Team.

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

Re: Trevor's Story

Postby sandraW » Sun Jun 22, 2014 8:53 pm

We had a great holiday, Trevor was fine as long as he had a good long sleep in the afternoons, 2 hours the first few days but down to an hour at the end of the holiday.
We were spoilt at the hotel with birthdays cakes, candles, singing, flowers and wine, our 2 sons and their families arranged a meal at a restaurant overlooking the beach, with the help of the hotel manager, so it was a really special time, we are very lucky.
I spoke to the Diabetic nurse specialists before we went away, to check that as Trevor's blood sugar had dropped back to normal perimeters that we didn't need to use the insulin unless it rose again, she informed us we needed a letter to fly with insulin, which she provided for us within the hour. She agreed that Trevor didn't need the insulin but to take it with us just in case and carry on with the Metformin, So even though I was worrying that the remaining third of his pancreas was not working as well it was, obviously it was the chemo that was affecting his blood sugars. We had already informed the airline that we needed extra hand luggage, so we packed the bag with all the necessary medication, copies of his prescriptions, fit to fly letter and letter to carry insulin. Guess what no one asked to see a thing, bag went through security with all the Fragmin injections, but no one seemed at all bothered, same on the return journey, we flew from Leeds Bradford so it might be different at another airport.
Since we returned home Trevor has been working in the garden he has been hard at it digging, planting, painting,cutting hedges, digging up trees and making fences, been outside 8 hours a day, think he is sick of being with me so is getting a break lol. I was a bit worried he might be doing too much but the Macmillan nurse rang the other day and said just to let him get on and do what he wants to do.
We go back to see the consultant on the 30th of this month but we will cross that bridge when we get there, for now things are good and we feel truly blessed, take care sandrax

Fifi

Re: Trevor's Story

Postby Fifi » Sun Jun 22, 2014 10:02 pm

Absolutely wonderful news Sandra. You always think about everyone else and very rarely post yourself, so it is really great to read Trevor's progress. You seemed to have everything under control and made sure you both had a great holiday. I think the garden is their world, where they can be by themselves and get the jobs done in peace. My dad loves to be in the garden, and when he is there, he wants to be there on his own. So I would agree, maybe just a tinsy bit sick of you! ( joke ).

Leila xx

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

Re: Trevor's Story

Postby sandraW » Wed Jul 02, 2014 11:48 pm

We went to see the consultant again on Monday,he filled in a bit more detail about the last scan and the shrinkage of the tumours, one had reduced by almost half, the other had not changed by much, but the good news was his tumour markers are now down to 220.
He said because there will be scarring from the operation in the pancreatic bed, it will not be easy to see if there is any recurrence of the tumour on the C/T scan, so he is going to use Trevor's tumour marker to decide when or if to restart treatment.
He also said that some people's markers don't rise even when the disease is very advanced, so I suppose we are lucky that Trevor's seem to be giving an extra marker.
We go for another scan at the beginning of August, then have another apt to see the Professor, so if the scan shows no change but the the tumour markers have risen then Trevor starts treatment again.
Its worrying that he seems to expect that the disease will return at the site of the operation, and soon, it is 10 months now since Trevor's op, and he continues to be well, so we just have to stay positive and I do know how incredibly lucky we are. take care sandrax

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

Re: Trevor's Story

Postby nikkis » Thu Jul 03, 2014 4:05 pm

Such good news that there is shrinkage Sandra, not a word we hear enough on this forum! Hope you can relax a little and enjoy the summer,
Best wishes,
Nikki

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

Re: Trevor's Story

Postby jay » Thu Jul 03, 2014 6:51 pm

great news about the shrinkage and fantastic the marker is going down,

love Jayne x

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

Re: Trevor's Story

Postby Bowie » Fri Jul 04, 2014 11:15 pm

Sandra, that's brilliant news. Really happy for you both and so good to hear some positives in connection with PC.

Fiona X

Fifi

Re: Trevor's Story

Postby Fifi » Mon Jul 07, 2014 8:32 pm

Good news Sandra. It is so good to read some good news on here. How does Trevor feel with the news? I'm asking that because when my dad gets good news, he seems to go quiet for a day. I don't know if it is because he is reflecting the news.
Hope Trevor still has plenty of gardening to do, think there is some good weather ahead.

Leila. Xx

Nelsmum
Posts: 19
Joined: Mon Apr 14, 2014 11:09 am

Re: Trevor's Story

Postby Nelsmum » Tue Jul 08, 2014 12:06 am

So good to hear your good news, well done to both of you.

Jane C

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

Re: Trevor's Story

Postby sandraW » Tue Jul 08, 2014 1:40 am

Leila, he was very disappointed to say the least, because he feels so well he thinks he is cured!! the professor who is a truly lovely man, explained that he could not cure him, he could only hold the disease at bay, and that he Trevor had to accept that fact, but that he was incredibly lucky that he was so fit, as that meant he will be able to have more treatment when it becomes necessary.
We also had an appointment with the Macmillan health centre within the hospital, with the gentleman we met back in November when Trevor started his treatment. It was good because he was able to get Trevor to talk more about how he felt, Trevor's way of dealing with it is, to put it all away in a box on a high shelf in his mind,forget about it and get on with life. So that's what we will do, not quite so easy for me though. thanks sandrax

Fifi

Re: Trevor's Story

Postby Fifi » Tue Jul 08, 2014 9:15 pm

That sounds very familiar Sandra, and yes, it is not easy for a loved one to deal with.
Trevor really does seem to be doing incredibly well, and his symptoms are barely there? Do you think that because Trevor was fit before diagnosis, that this has worked in his favour?

I really hope this carries on for you all.

Leila xx

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

Re: Trevor's Story

Postby sandraW » Wed Jul 09, 2014 12:45 am

Hi Leila, I wouldn't say that Trevor was fit, he never went to the gym or anything like that but he was and still is reasonably healthy, I don't think the disease had chance to impact on his health too much. We have always eaten well, very few takeaways ect, he has never really drunk alcohol, even when he was young, but he did smoke, well still does to be fair, but he has cut down.
I do think being healthy has helped with the chemotherapy, but the rest I think is down to luck, he was lucky to be able to have an operation, lucky to get such a great surgeon and team of oncologists and lucky, that at the moment he does feel well. take care sandrax

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

Re: Trevor's Story

Postby Slewis7313 » Wed Jul 09, 2014 8:53 am

All sounds pretty good news to me Sandra. It is good to hear Trevor remains so active and feels well.

It is sometimes easy to forget the little devil is inside you. I had 10 months of no treatment and during that time felt relatively normal, but then the tumour marker rose, pulling me back down to earth and back on to treatment. I don't wish that to sound negative as I fully expect Folfirinox to give the damned thing a serious knock-back and again to allow me to have another period of relative normality.

Luck has certainly played a role in my story, primarily in my luck at having a switched on GP who referred me after just one visit, obviously seeing symptoms that I did not.

We just need to keep kicking the thing when it raises it's ugly head, a system which has worked well for some people for quite a prolonged period of time.

Hope you both really enjoy the summer and your gremlin stays silent.

Steve
X