A forum for advanced pancreatic cancer issues

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Postby Sam77 » Wed Feb 08, 2012 4:45 pm


I'm new to forums and not even sure I have done it right. Just would really like to talk to people in the same boat or understand what it is that I am going through.

I am 34 years old and was diagnosed on september 27 th 2011, with pancreatic cancer, which had spred to my liver. As it had spread so much they could not operate and went straight on to chemotherapy for 3 months. I was very lucky and didn't have too many side affects from the chemo. I got more side affects from the steroids, weight gain, swelling, moon face that type of thing.
I had a break over Xmas and got my CT results in the new year. The original lesions on my liver had remained the same but sadly two more had grown and one was 17 mm big. So this time I'm having two lots of chemo, tables every day and IV every 3 weeks. Again not getting too many side affects from the chemo. It's the steroids Im having more problems with and getting the right pain relief sorted.

From day one I have been 100% positve. I will not let this b*****d take me with out a bloody good fight. I am making sure that I make the most of every minute that I have. Spending it with family and friends. I have been told off by my pain doc that even tho I look well I am not and should take it easy. I told her that the will be plenty of time to lay in bed.... But I must admit since my dignosis I haven't stopped and my body has been screaming to slow down. So from this week I am learning to say no to people and things and try to chill a bit, but the last 2 days have been strange not having this to do or places to go..but it has done my legs, feet, ankles and knees good as been pretty swollen over the last 5 days.

Think I have waffled way too much already and not sure what else to say but hello :P

Sam xxx

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Re: Hello

Postby louiepc » Wed Feb 08, 2012 6:46 pm

Hi Sam,

Welcome to this forum. I have been on here since August 2011. My mum had pc. I have made great friends on here, i have had fantastic advice, I've even been on here because I've been so angry/upset and ppl understand. They know what your going through.

I'm so sorry that you have pc, you are very young, but like you say u are positive that you are going to fight, and that's not a bad thing.

Keep posting, keep strong. Love louie x

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Re: Hello

Postby Mistipop » Wed Feb 08, 2012 10:08 pm

Hi Sam,
My mum was diagnosed in October 2011. I don't post much but i'm often on here reading other peoples stories. It's nice to know there is somewhere to go where you can get support, rant & rave, ramble on in the early hours of the morning, whatever you like. It's nice sometimes to chat to people you don't know but who totally understand what you're going through.
Like you say you're young and you're a fighter but take it easy sometimes too.

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Joined: Thu Jul 01, 2010 1:53 pm

Re: Hello

Postby laura » Thu Feb 09, 2012 12:29 am

hello sam, welcome to your new friends, so very sorry to hear your news, regretfully we cant change whats happened [ if only eh] but a new "normal" life can be made, do take your docs advice cancer cannot usually be "seen", the effects can though, so dont push your body too much too soon, it needs time to gather strength, repair, where it can, and be ready for the fight ahead,my husband is 2 years diagnosed, just on a 3 month break from "Gemcap" his chemo regime, has had 19months of it, just had scan on monday, see our oncologist on 23rd,so of course got everything crossed, we have had two shrinkages in first 6 months thereafter tumour [ head of pancreas, inoperable] has been static. so try and stay positive. eat well and rest, other than that "enjoy" lol take care, love laura x

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Joined: Tue Jan 10, 2012 1:47 pm

Re: Hello

Postby dmc236 » Thu Feb 09, 2012 8:12 am

hello sam, and welcome to the forum. you sound very positive so you will be as good for others on here as they are for you :D
its a very supportive group and realy does help just to dip into it sometimes for advise and info, learning from others experiences.
Im so sorry you have this horrible disease so young but glad youve found the forum for support.

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Joined: Tue Sep 20, 2011 9:18 am

Re: Hello

Postby rachelqt » Thu Feb 09, 2012 9:38 am

Hello Sam
Im really sorry to hear about your diagnose with PC. I think it is very important to have a positive attitute, as my dad says 'its half the battle'! My dad was diganosed 5 months ago with inoperable PC and is so positive too. We came from the very bottom being told he had days left to live to now having Gemcitabine and tumor markers reducing really well and he is having a good quality of life now. So keep up the good fight, although listen to your body and take it easy on the days you need too.
As everyone says you will find good advise and information on here.
Takecare..Rachel x

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Joined: Wed Feb 08, 2012 4:12 pm

Re: Hello

Postby Sam77 » Mon Feb 13, 2012 10:31 pm

Thank you everyone for your reply's. It is so good to know that there are people out there that I can't talk to and about things I don't want family and friends to know, things that may upset them.

I had a crazy week last week. Thought out my treatment due to steroids n the chemo I have suffered with a lot of swelling. Both my legs were swollen for about 5 days leading up to last week... Didn't think anything about it a it happens so often. But last thurs I woke up and my left leg felt really tight and painful to walk on, just thought it was the normal sweeping. Friday I woke and the same thing, tight calf and pain on walking. I went to my local GP to get it checked as also needed some new drugs. He then sent me for a ultra sound and turns out I have a blood clot in left calf. Well gutted and had to spend the night in hospital as was worried it may have gone to my lungs.
Was so happy when they let me go home the next day. Have to now inject my fat belly with fragmin ( think that is how you spell it) everyday. Not sure how long that is for as seeing my consultant next Monday. But ghee is it painful to walk or stand on. And I am not happy about being house bound for a while. I have come to the conclusion that when I do get really ill I will not be a very good patient hahaha, family not happy either, as say I will be a right pain in the bum...

Does any one know how long it takes for the pain to go and how
One you have to inject for??
Oh also do you think I will be able to fly to Ireland in 4 weeks.... All theses I will ask on Monday of course

Sam x x

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Joined: Mon Jan 30, 2012 8:33 pm

Re: Hello

Postby AnthonysDaughter » Mon Feb 13, 2012 11:09 pm

Hi Sam

Sorry to hear about your blood clot, dad was taking deltaparin (brand name fragmin) as he developed blood clots on his chemotherapy, his were found in his lungs I believe as he was getting terrible pain in his side, he was on 12,500 injection each day. He coped really well with self injecting. Which was another huge hurdle for him as he was terrified of needles. Those support stocking things they give you after surgery were helpful too. I would say to you, let your family help you ad much as you can, it really helps them with what's going on with you, enjoy being pampered too with extra cups of tea. But ultimately, do everything your way, but don't forget to rest! Thinking of you, take care, im very glad you feel you can discuss things on here with people who have an understanding, I think with any major life event you can't really understand unless youve been through it, big hugs xxx

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Joined: Sat Aug 28, 2010 6:23 pm

Re: Hello

Postby lynbo » Tue Feb 14, 2012 10:33 am

Hi Sam

Welcome to this forum
We are all here to help in any way we can, I think you are great to come on here when you have a lot going on with yourself, as majority of people on here are family and friends of someone living with PC.
How has your day been so far? whats new?

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

Re: Hello

Postby PCUK Nurse Jeni » Tue Feb 14, 2012 2:02 pm

Hi Sam,

Usual treatment for blood clots is 6 months injections.

You should be ok for Ireland, as you are on treatment already and it is not long haul.Will need flight socks. However, every consultant has their own thoughts, so best to check at hospital.



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Joined: Wed Feb 08, 2012 4:12 pm

Re: Hello

Postby Sam77 » Tue Feb 14, 2012 4:00 pm

Thanks guys,

I am seeing my consultant next monday so will ask him then about the flying situation and how long to take the injections for, I did get tod that he likes you to take things longer then normal.
Yeah I will also ask for some of those socks... So hope he will let me fly as also want to do things on my bucket list and that includes lots of flights... Want to get to the USA to see my brother and to go to Vegas, family holiday in Spain, trip to Italy and then hopefully get to New Zealand as used to live there and want to get back to see friends and family. I have some pretty amazing friends back here and NZ as both sets of friends have done fund raisers for me so that I have the money to do things on my bucket list.... Once the doc gives me the go ahead I'm off on some jolly hold 8)

Leg still painful but just trying to keep off it. I have a CT scan tommorow,,doing one half through this time to check on how it's going, not sure if that is a good thing or a bad thing... Will be funny tho as as it hurts so much to walk on my leg I will have to see if they have a wheel chair, now that will be fun. Also I used to work at that hospital, so im bound to bump into work mates when in the chair....

Thank you for all your advice, it does help writing on here... Even if no one comments I see it as a way to get your feelings out that you don't want to say to family or friends, does that make sense?

Sam x x

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Joined: Sun May 15, 2011 8:54 pm

Re: Hello

Postby john27 » Wed Feb 15, 2012 4:16 am

Hi Sam

I have just read your posts and that's a very tough break at your age. But you sound very positive, energetic with plans going all over the world, which is brilliant.
I have been affected by this disease (not a nosy!) when Mum had it last year.

So I can confidently say the forum is a fantastic place to ask those questions that ya may have forgot or for new info too, also to let it all out when things don't seem so good and you won't be judged as we all know how hard it can get.

I wish you all the best for whatever's coming, keep the positive mind, and keep the people you love close to you. Keep us posted as we're all rooting for ya!