A forum for advanced pancreatic cancer issues

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Lels
Posts: 13
Joined: Tue Sep 24, 2013 4:10 pm

Hi..from a newbie

Postby Lels » Wed Oct 02, 2013 4:19 pm

Hi everyone, I joined this site a couple of weeks ago and have spent hours reading through your posts and replies. I thought it was time to say hello and to get more involved.

I was diagnosed with Stage 4 PC with mets on the perituneum in April this year. I went to the doctor with lower abdomen pain and my blood test came back a bit iffy. I was seen very quickly at the hospital and the CT scan revealed my worst nightmare. I had already lost my Dad and Brother to Cancer.
My chemo regime is Gemcap once a week for 3 weeks then a week off, I am due to start cycle 6 next week with a CT scan at the end of the month. I also receive palliative care from a hospice, a nurse and a social worker visit me at home.

How confusing is this evil disease!! I was in a terrible state at the beginning of treatment losing 3 and half stone, and never wanting to eat, I had no energy and no will to live. Then out of the blue I fancied a roast dinner and my appetite has been back to normal since, I have now put 10lbs back on.

The bravery shown by sufferers and carers on here, puts me to shame. My family are so very positive, but I still find it difficult to come to terms with the fact that it is not curable.
My thoughts are still all over the place, and I know it will be a great help to me to be able to talk things through on this site.
So thank you all
Lots of love
Lesley x

InfoForMum
Posts: 332
Joined: Mon Aug 19, 2013 12:01 pm

Re: Hi..from a newbie

Postby InfoForMum » Wed Oct 02, 2013 4:57 pm

Welcome to posting Lesley,

I'm so sorry about your diagnosis. As for all on here the world must have turned upside down for you.

I can't share much experience and advice compared others as I'm posting on behalf of my mum and it's early days for us (diagnosed mid August, currently classed as borderline rescectable adenocarcenoma, head of pancreas with portal vein and arterial involvement, l1st cycle FOLFIRINOX now day 7, CREON since stent op). So just wanted to say hi and welcome to posting.

As you've probably gathered from reading things here you are very very welcome and feel free to rant, share news, whatever.

Take care

Sarah

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

Re: Hi..from a newbie

Postby J_T » Wed Oct 02, 2013 5:19 pm

Helo Lesley and welcome.

My husband is the one with pc and as you say it is so very difficult to come to terms with such a diagnosis but it sounds like you have great family support and that will help you enormously I'm sure.

As Sarah says this is definitely the place to share both highs and lows and generally vent. We even manage to have a few laughs along the way!

Do keep us up to date with how you are doing, we are always here with an ear.

Julia

EmmaR
Posts: 197
Joined: Fri Sep 20, 2013 11:06 pm

Re: Hi..from a newbie

Postby EmmaR » Wed Oct 02, 2013 5:28 pm

Welcome lesley and (David on the post before your's )it's so difficult to take in that there are two more lives that have been devastated by this awful! awful! disease and both your stories are so similar to my hubbys but you like us all on here are prepared to fight and not give up here's to more good days than bad .
Emma R

Lels
Posts: 13
Joined: Tue Sep 24, 2013 4:10 pm

Re: Hi..from a newbie

Postby Lels » Thu Oct 03, 2013 10:20 am

Hi everyone, thank you for the warm welcome.

I just wanted to ask if anyone is experiencing night sweats? I have been having them for the past 3-4 weeks its just like going through the menopause again, and once was enough !!
My doctor cannot give any explanation other than it might be a chemo side effect, but I sometimes wonder if they put everything down to being a side effect.

My best wishes go out to everyone going through this evil, and to everyone caring for a loved one, to be honest I am not sure which is worse. I just thank god for this site, so we all know we are not facing this alone.

Lots of love
Lesley x

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

Re: Hi..from a newbie

Postby nikkis » Thu Oct 03, 2013 2:15 pm

Hi Lesley,
My husband has frequent sweats (has had a pancreatectomy and now 4 lots of Folfirinox)although they not always at night. We have been told it can be the chemo, but as I am sure you have been told you need to keep an eye on your temperature and contact someone if it goes up.
Welcome to the forum. Everyone is very supportive but it's a bugger that we are all in this position!

Nikki

Birchen
Posts: 77
Joined: Thu Sep 05, 2013 1:53 pm

Re: Hi..from a newbie

Postby Birchen » Thu Oct 03, 2013 3:47 pm

Hi Lesley
Yes my husband has night sweats which we thought were chemo related, although sometimes he complains that he is cold. Have taken temperature checks on several of these sweats but it appears to be normal. Maybe it is a side effect of the pc but our oncologist did not confirm this. Hope they get better soon.
kind regards Lyn

davidandsam
Posts: 35
Joined: Mon Sep 30, 2013 2:32 pm

Re: Hi..from a newbie

Postby davidandsam » Thu Oct 03, 2013 4:44 pm

Hi Lesley

As a newbie myself I feel a little inexperienced to offer welcomes, but as we are all in the same boat "Welcome". My chemo is different to yours (Folfirinox)and I start my 4th cycle next week. I too have experienced night sweats especially in the 46 hours I am connected to my portable pump and bum bag. I am not sure if it is chemo related or otherwise but I do feel that in the morning I am reaching for the water to put back some essential fluids. Through the course of the 14 day cycle the phenomenon disappears and I have to say that in the 3rd cycle it was better than the previous two so I do hope it is something which subsides over time!

Staying hydrated seems to help me a bit. Hope yours subsides soon

David

Lels
Posts: 13
Joined: Tue Sep 24, 2013 4:10 pm

Re: Hi..from a newbie

Postby Lels » Fri Oct 04, 2013 10:25 am

Hi all, and again thank you for your replies. I got to thinking about whether or not I drink enough, so I spent the day yesterday drinking water and lots of other drinks. I didn't have any sweats last night, so this could well be the answer, although this is my chemo free week too.
I think I am going to give this a try for a couple of weeks and see how it goes. If anyone has any other ideas, I would be grateful to hear them.

Take care

Lesley x

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

Re: Hi..from a newbie

Postby J_T » Fri Oct 04, 2013 11:22 am

Hi Lesley, yes the nurses here will tell you the importance of drinking plenty of fluids, more on chemo week.

Glad to hear you had a more comfortable night.

Julia x

Lels
Posts: 13
Joined: Tue Sep 24, 2013 4:10 pm

Re: Hi..from a newbie

Postby Lels » Sun Oct 06, 2013 10:40 am

Good morning all..just a quick update on the night sweats. I have increased my fluid intake massively, and have had 3 lovely nights with no sweats, so thanks again for the advice and please keep your fingers crossed for me !!

Lesley x

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

Re: Hi..from a newbie

Postby Slewis7313 » Sun Oct 06, 2013 10:59 am

Sounds a bit like negative logic working here..... Great that it seems to be working though.

Take care

Steve

Lels
Posts: 13
Joined: Tue Sep 24, 2013 4:10 pm

Re: Hi..from a newbie

Postby Lels » Wed Jan 22, 2014 12:45 pm

Hi everyone,

Its been a long time since I posted on here, but I have kept up to date with all your posts. My condolences to all who have lost their loved ones.

As for me, after my 6 months of chemo, I decided to have a break and have not had any further tratment since Nov 13. I have been feeling on top of the world and even went on holiday to Egypt with my family a couple of weeks ago. I had a scan yesterday and await the results next week. I am in a dilema as to whether to continue with treatment, or to let nature take its course. I really dread the chemo and how terrible I felt after it, I guess it boils down to Quality or Quantity of life....I just don't know. Is it selfish to not want to live for as long as possible ??

Hope you don't mind me sharing my thoughts, it helps to write them down and get it off my chest. I would be interested to hear your thoughts on this too...

Thanks for listening
Take care

Lesley x

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

Re: Hi..from a newbie

Postby Cathy » Wed Jan 22, 2014 1:57 pm

Hi Lesley

There is no easy answer. A break means you don't need all those hospital appointments or the chemo side effects and, as you are feeling well, can do what you have been able to do, go on holiday and enjoy your life. This is what chemo is for. Clearly the downside is that you are in limbo waiting for symptoms to reappear. And then the fear that you may become too poorly for treatment to restart. However, staying on chemo means that you have a life living with it's side effects which might be no life at all depending on how you react.

My Jonathan hated being on folfironox, he was so wiped out by the last cycle he really had no quality of life, fatigued and with oral thrush, he didn't enjoy food and couldn't get out of bed. Three weeks after stopping we were in Greece for a fortnight and enjoyed a wonderful summer. He did not want to restart treatment until he had to. He couldn't have continued on folfironox even if he'd chosen to due to the neuropathy. We knew it was a waiting game.

When symptoms did restart there was confusion at first as this coincided with some very good scan and blood results showing a reduction. Oncologists didnt seem to think symptoms were therefore cancer related. We needed another CT scan when other things had been ruled out to show the cancer had progressed a little. The oncologists still weren't overly concerned but we restarted chemo. This was always the plan.. Restart when symptoms develop. For us things went pear shaped then.

Jonathan died on the 10 January. At the moment my head is full of "what ifs". What if we had done things differently. But there are some things that were clear and that was that Jonathan was delighted to have the break and did not want to restart chemo unless he had to. We had the most wonderful summer free from symptoms and free from hospital appointments.

Apologies for the rather rambling reply.. As I said, there is no easy answer and really only you can decide. I would suggest a discussion with your oncologist over what they think as it maybe that you wouldn't go onto folfironox anyway but a chemo you might more easily tolerate.

Hope this helps in some way....

Cathy xx

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: Hi..from a newbie

Postby marie souter » Thu Jan 23, 2014 2:32 am

Hi Lesley,

Thankyou for sharing your story, it was my mom who had PC, she refused chemo and went through a few mths of horrendous night/day sweats .. we were told by our palliative care nurse and the district nurses it was caused by the cancer and it was a side effect of the disease seen by a lot of cancer sufferers, one other person said it was possibly her diabetes as it was mostly out of control...it was to the point where I had to change her bedding and bedclothes frequently and you could literally see where she had been lying by how wet her sheet was ... I would give her a wash a change and a cuppa and she always felt a lot better after .. it was always when she was sleeping whether through the day or night these sweats dont have a timeclock .. she also drank loads and loads though so drinking didnt help her at all but am so chuffed its working for you and continuing to work for you ... my fingers are crossed this continues for you
With regards to how you feel about continuing chemo this is entirely a personal choice my mom chose not to have any mostly because she was already suffering bad sickness episodes and this left her so weak that the thought of the possibility of suffering this with chemo put her right off ... I tried speaking to her about making such an important decision when she didnt feel well .. but her choice was made .. rightly or wrongly it was her choice and yes of course as her daughter I wanted her to do anything that could prolong her life ... I think selfish doesn't come into it, it's your life your choice, you are the one the disease is affecting. I think the only advice I would give you is to talk to your oncologist and weigh up the pros and cons with them they are happy to have this discussion with you as they were with my mom...any decision you make after this if an informed choice and I'm sure either way your family will support you whatever you decided ... black and white though my mom from diagnosis without chemo lasted for 8 mths and 1 week and she had a lot of ups in that time she very much had a rollercoaster cancer trip and was not your typical straight forward journey she had mths where she had a very good quality of life but now that shes passed I often wonder what would've happened had she gone down the chemo route, would it have given her an extra year? But then this is all moot as shes gone and she knew the choice she was making when she made it...I had my weak moments when I questioned her again on her decision after reading online of someones tumour shrinking significantly but she was stoic in her determination and refused to budge an inch ... she was such a stubborn buggar lol ... I'm sure when you come to a decision it will be the right one for you .. know that if you choose no its always good to keep your appointments if you can as there is no rule that says you can't change your mind again ...

love and hugz
marie
xx