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LittleMissOptimistic
Posts: 21
Joined: Wed Nov 12, 2008 11:52 am

Please.. if you read this, reply.

Postby LittleMissOptimistic » Fri Apr 24, 2009 1:18 am

Hi all,

A year ago today my mother was coming out of Whipples surgery. It must have been the hardest day of my life. To date. Weeks and months of chemo followed.. which you probably all know how unpleasant they are. I wont go into detail. A month after her last Chemo (which lasted 6 months altogether) her tests came back clean. I was screaming for joy. It didnt last long though. A few weeks later she was back in hospital, for reasons they didnt discover until much later, when she had surgery unrelated to the previous. Unfortunatelly, a couple of weeks ago a new biopsy came and said she has cancer reocurrence. She has already started Chemo and is on an (additional to many others) drug called Erlotinib (Tarceva®). This is ment to be for cases of p.c. which cant be surgically removed or which has metestasized. Apparently this is not prescribed in UK? Is that so??
I cannot begin to explain how devastated we all were by this reoccurence. My mother however has forever been fighting this with all her might. I am trying hard to write this note in order and I really truelly hope that many of you will reply so that I can get to know you and give and get from this community.
My Best.

Nardobd
Posts: 479
Joined: Sat Feb 14, 2009 6:25 pm

Re: Please.. if you read this, reply.

Postby Nardobd » Fri Apr 24, 2009 11:55 am

Hi Optimistic and I'm sorry to hear your news. This is a cruel disease indeed and particularly so when you've had the 'all clear' only to be devastated again.

My husband, Ted, has locally advanced pancreatic cancer which isn't operable. He's on gemcitabine monotherapy (ie only gemcitabine, also known as Gemzar). We discussed with his consultant the possibility of other chemo drugs and were told that there is a UK trial of Tarceva for those whose diagnosis is confirmed with a positive biopsy. Ted's Endoscopic biopsy wasn't positive, although there were a number of other confirmatory tests which were. This meant that, unless he underwent a surgical biopsy or FNA (fine needle aspiration), he wasn't eligible to join the Tarceva trial. Ted decided to stick with the gemcitabine rather that undergo additional biopsy procedures.

Like your Mum, Ted has been fighting this bravely and with dignity. I'm so honoured to be standing beside him, as well as humbled - I'm sure I wouldn't have the kind of courage he shows.

Thinking of you.

Nicki x


EDITED TO ADD: I've been asked whether the trial could be for Telovac rather than Tarceva. My recollection was that it was for Tarceva but I can't be positive - like most people on the forum I've had to climb a huge learning curve and I may be mistaken.

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Please.. if you read this, reply.

Postby Ellie » Sun Apr 26, 2009 9:31 pm

Hello Miss Optimistic

So very sorry to hear your story. How awful to think your Mum was clear, only to find so soon after that she wasn't. I can imagine how you feel because my husband only had one last chemo session to go and we thought he would be clear, but then we were told the PC cancer had gone to his liver. It's just devastating.

We go to see the oncologist on Wednesday to learn what treatment he will receive. We think it will be gemcitibine, like Nicki's husband is on. I am trying to read up on as many different treatments as possible, so I can ask questions when I get there. I found the original PC diagnosis easier to understand, somehow. Trying to work out what happens from here seems to be much harder, somehow.

Anyway, just wanted to say hi and offer you my sympathy. As awful as it is for all of us, at least we can post on here and maybe help each other and learn more. The main thing is - stay strong and positive!

Best wishes to you and your Mum

Ellie
xx

emma
Posts: 23
Joined: Mon Mar 23, 2009 5:23 pm

Re: Please.. if you read this, reply.

Postby emma » Mon Apr 27, 2009 1:44 pm

Hi!
Just to say how much i really feel for you and your family, My step dad was diagnosed a couple of weeks ago after having a successful(?) Whipples at the end of march, I know the odds long term aren't good for him but we are just taking one day at a time, he starts his Chemo next week and I know we are in for a long and rough journey, but what is the alternative? All we can do is fight it as hard as we can for as long as is possible and hope that he is one of the lucky ones. I came on to this website at the most difficult time of my life, I had just learnt that one of the people I loved most in this world could be taken away and I wanted answers. I didn't get answers because there are no answers, it seems that with this dreadful disease everyone is different, what i did get was some incredibly kind replies from people who understood and had been there, some with poisitive stories and some with not so, but to know there are people who understand and are there for you is invaluable, I have also been able to help him prepare for each step going forward. So keep fighting everyone, keep hoping and if this website has taught me anything it's to take one day at a time. We are at the beginning of a long road that you have already started on, so I'm afraid I can't be much practical help,but just keep believing that the end of that road is a long way off.
With much love
Emma x

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Please.. if you read this, reply.

Postby Ellie » Thu Apr 30, 2009 10:26 pm

Hi, how are you all are doing?

Never sure where to put my posts (I'm a carer, hubbie had whipple, then chemo, now new probs, so I don't see to fit in just one category. Sorry if I do post in the wrong section.

Anyway, we saw the oncologists on Wednesday, armed with a list of questions and alternative treatments to chemo. We had learnt a few weeks ago that they had found a very small spot on hubbie's liver, which was new cancer. I asked why they couldn't just zap it with various treatments I'd read about, but it seems that once pancreatic cancer spreads to the liver, it is likely to keep spreading and can't be treated as a one-off problem. The fact that it's spread means it could appear elsewhere too. It seems chemo is probably going to be the best thing after all, for that reason.

But, they were amazed how well hubby was this week (the lovely week's break we had in Dorset, sea air & sunshine must really have helped!). He is near enough back to "normal", after getting most of the original chemo out of his system, and he really did want to make the most of that feeling, so it's been decided that they will hold off any further treatment for about another 6 weeks. They told us to go and have a holiday (not realising we'd just had one break!) and come back for a scan in 6 weeks, to see how this spot on the liver has changed. They didn't think it would make much difference to leave things for that amount of time, but as I'd also asked for a second opinion, they are going to review things in that time, too.

We're trying to get a balance of the best care and treatment, yet not allowing this damn cancer to take over our lives. Quality of life has to come into it somewhere, and this is what hubby wants - to make the most of this "feel good time" to enjoy his life again. So, we're planning another small holiday early in June and making the most of every good day until then.

Thinking of those who have lost loved ones recently, and those who are fighting, like we are, for small improvements, a lot of luck and maybe a miracle if we are lucky.

Love
Ellie
xx

Ellie
Posts: 302
Joined: Thu Sep 04, 2008 11:03 pm

Re: Please.. if you read this, reply.

Postby Ellie » Sat May 09, 2009 8:27 am

Hi, Little Miss Optimistic

Just wondering how your Mum is doing? Hope things are going ok for you all.

How is everyone else getting on? Please keep in touch - we have to keep using the site. I'm sure we all found it useful when we were looking for info or support. It would be a shame if the opportunity to contact others was taken away from us, because of lack of use.

Best wishes
Ellie
x

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LittleMissOptimistic
Posts: 21
Joined: Wed Nov 12, 2008 11:52 am

Re: Please.. if you read this, reply.

Postby LittleMissOptimistic » Thu Feb 10, 2011 8:04 pm

Dear Nicki, Ellie, Emma and all,

thank you so much for your replies, I only just saw them today.
I started a new topic , for unfortunate reasons,
which you may or may not want to read.
It's here anyway:
http://www.pancreaticcancer.org.uk/disc ... 2880#p2880

My best,
Ella