A forum for family, friends and carers of pancreatic cancer patients

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

Re: Mum's diagnosis

Postby Cathy » Tue Jun 24, 2014 12:50 pm

Hi Sue

No, you're not really meant to identify anyone or any hospital on here as it's a public forum.

If you email the nurses though they will be able to tell you if there is a support group locally to you.

Kind regards

Cathy xx

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

Re: Mum's diagnosis

Postby Sueoliver » Tue Jun 24, 2014 9:02 pm

Thank you Cathy I will try that. It would be so good just to talk to someone. Sue x

princesspentium
Posts: 26
Joined: Wed Nov 13, 2013 8:36 pm

Re: Mum's diagnosis

Postby princesspentium » Thu Jul 03, 2014 3:22 pm

Just wanted to say hello and that i know what you're going through. My 88 yr old mum was diagnosed with inoperable pc in November 2013 & given a year. She was a lively person with lots of interests who loved cooking & eating but now she is just waiting to die. It hurts that she won't discuss her situation and the medical profession seems to have given up on her.I live 150 miles away which makes things harder to bear.

You need to fight for all the care your mum needs - lets hope that she can get some Creon - to help with weight loss. How daft to say that food supplements are full of sugar - she needs something as she isn't producing any enzymes to help her absorb the nutrition of whatever she eats.

Take care of your mum & yourself Sue.

Best wishes
Ruth

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

Re: Mum's diagnosis

Postby Sueoliver » Thu Jul 03, 2014 10:01 pm

Thankyou so much for everyone's kindness. Since I last posted my mum has got on really well with the creon. She has experimented with her dose and increased it. She is eating more and looks so much better. Her energy levels are getting better day by day , she even did some gardening.
Yesterday she had a hospital appointment to prepare her for chemo. She saw the dietician who has been wonderful and mum listens to her! The doctor was pleased with her as she has only lost 2lb in last 2 weeks! We saw the nurse who went through all the side effects of chemo, a bit frightening but best to know.
Today mum had her line fitted and told me she didn't feel a thing! She even had the nurse talk her through each step as she was doing it! Made me feel a bit funny!
Tomorrow is her first chemo. I think I am more apprehensive than her! She wants to get on with it.
I am struggling now as I keep thinking about what can happen especially and she is now doing so well. I am trying to be positive but am scared the chemo will knock her back with the side effects when she has just started to improve! I know that is crazy as she has to have chemo and the improvement is because of the creon.
I will update with her progress in a few days and fingers crossed she will cope with the chemo well.
This is such a great forum and everyone on here is wonderful.
Thankyou for your message Ruth and I'm so sorry about your mum. I am fortunate to live very near mine.
Sue

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

Re: Mum's diagnosis

Postby sandraW » Thu Jul 03, 2014 10:59 pm

So glad your mum is feeling better, everyone is very different with their symptoms from the treatment, its just wait and see, which I know is no help at all!! My husband was not too bad at all really, tingly fingers and couldn't touch anything cold he used to pick up his glass of water with his glove on, it did make me smile, also he couldn't drink anything cold either for they first couple of days, but I have heard of others calling in at the pub on the way home for a pint, as I say everyone is different. I hope she's ok take care sandrax

Vanessa
Posts: 2
Joined: Wed Jul 02, 2014 10:33 pm

Re: Mum's diagnosis

Postby Vanessa » Fri Jul 04, 2014 12:41 pm

Hi Sue.

This is my first message on the forum. I have read all your messages and your story is so very similar to mine. Mum was diagnosed with inoperable pancreatic cancer at the beginning of June, after 6 month of not feeling well. She too has lost just under 2 Stone. We saw the consultant a couple of weeks ago who said she has lesions on her liver which could possibly be secondary cancer, she had a biopsy carried out on her liver last week and we are due to get the result on Monday. We are very apprehensive and scared what we will be told on mon and if they will talk about timescale. They told mum that she could only have palliative chemo to help hold thing back. However I (like you) don't think mum know the severity of this dreadful disease but feel that it will be a big shock for her on mon. We also have our first visit to the oncologist the following day.

The prognosis I believe is very poor with secondary cancer in the liver, how is your mum coping with the prognosis.

Thanks

Vanessa

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

Re: Mum's diagnosis

Postby Sueoliver » Fri Jul 04, 2014 6:19 pm

Hi Vanessa thank you for messaging I am so glad I found this forum it helps you not feel so alone. When we saw the oncologist he said 8-12 months and it was me who fell apart not her! I'm not convinced they should give time scales ! My mum is always talking about when she gets better she never talks about what the oncologist said! When she had her first Ct scan they said it was in her pancreas and bile duct with no further spread. They will not do another scan until she has had 3 months of chemo! She had her first chemo today and it all went well. She was fine when I left her ! Let's wait and see what the next few days hold.
Your mum may surprise you! Mine definitely has.
Does your mum take creon? My mum was quite poorly before getting to grips with the creon and they have made a difference. She has also had a stent put in her bile duct which took her a while to recover from but seems ok now.
There are dieticians at the hospitals and they are helpful I would ask to talk to one if they don't offer.
Now we are having treatment at a cancer unit things are so much better they help you. I found that before my mum was just left and no one contacted her from the hospital she was diagnosed at.
We have been told she won't be cured but the chemo may keep it at bay,fingers crossed, it is hard.
Hopefully we can support each other through this nightmare. It definitely helps to write things down.
I hope your oncology appointment goes well and they are helpful. Be prepared to hear things you don't want to but be strong for your mum.
Sue x

Vanessa
Posts: 2
Joined: Wed Jul 02, 2014 10:33 pm

Re: Mum's diagnosis

Postby Vanessa » Fri Jul 04, 2014 7:41 pm

Thanks for the reply Sue. No she hasn't had creon yet were just looking into them but willing to try anything that will help, I believe mums bile ducts are blocked but no one has mentioned a stent, so will mention that on mon.

Really scared what the outcome is going to be, but I think we already have a good idea. It doesn't seem real yet it feels though its happening to another family and not ours. I think when we go on mon it will all feel very real. Just hope mums hasn't spread into her liver aswell. She is 77 similar age to your mum.

Thanks for your support, hope your mum copes with the chemo well.

Vanessa

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

Re: Mum's diagnosis

Postby Sueoliver » Sat Jul 05, 2014 8:52 am

Hi Vanessa take a notepad with you and have your questions written down. My mum is 76 so very similar ! My mum was also being sick before the creon. The hospital have given her anti sickness tablets which she takes and this has stopped the sickness. Her GP and hospital where she was diagnosed were not very good it is the cancer unit that have been brilliant!
I am going to see her today and I will post later about her first night after chemo.
Stay strong, it's not easy, but they need us.
Sue x

brodders
Posts: 65
Joined: Fri Jun 20, 2014 7:51 pm

Re: Mum's diagnosis

Postby brodders » Sun Jul 06, 2014 5:01 pm

stay strong ladies. My precious mum lived for only 11 weeks after first being diagnosed. We were given various time limits - everyone is so different. All I can say enjoy your mums and cherish them. My mum was 76 too and died 10 weeks ago. She was amazing, never shed a tear and was so accepting of her illness. It has been very tough but have got strength from her strength. Enjoy and love them xxx.


I have been trying to remove this. Even though means so much to me not at all helpful to you x
Last edited by brodders on Mon Jul 07, 2014 12:00 am, edited 1 time in total.

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

Re: Mum's diagnosis

Postby Sueoliver » Sun Jul 06, 2014 9:41 pm

So far so good with the first chemo. No awful side effects so far, slight loss of appetite and one bout of sickness at lunchtime today.
The district nurse popped in and flushed the line. Mum was really pleased to see her as she felt she was rid of the treatment for now! Psychological I think!
Not really sure what to expect over next few days just hope she carries on feeling ok.
Had to buy her some size 10 trousers today!
Sue x

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

Re: Mum's diagnosis

Postby Sueoliver » Tue Jul 08, 2014 7:10 am

Brodders don't worry what you wrote was from the heart about your mum. I do understand.
Vanessa if you are still reading how did you get on yesterday? I'm sure it will have been tough. I couldn't even function properly for a couple of weeks after my mums diagnosis.
Sue x

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

Re: Mum's diagnosis

Postby Sueoliver » Wed Jul 16, 2014 5:28 pm

Mum has lost a few more pounds! She hates the creon tablets! She won't swallow them as she says she can't! She puts them in apple purée or yoghurt it is really hard work! She says she would eat more if she didn't have to take them. It must be psychological. Has anyone else come across this state of mind?
She is having second round of chemo on Friday and they are keeping it at a 20% lowered dose. Is this normal?
She doesn't go out and sits in her chair watching television most of the time. Sue x

deb3927
Posts: 5
Joined: Tue Jul 15, 2014 11:22 pm

Re: Mum's diagnosis

Postby deb3927 » Wed Jul 16, 2014 9:54 pm

I am in a similar position, my mum was diagnosed in April this year. (just posted my full story)
It takes a few times of suggesting something before my mum will try it! It can get very frustrating!
It took weeks to get her sickness under control as she would just take the meds if she started to feel nauseous, finally when we told her for the umpteenth time to take them as directed it all settled down! Once that settled she started eating a bit more and she just eats whatever takes her fancy! My aunt baked a chocolate cake this morning and took it over for the 2 of them and she said she thoroughly enjoyed it. Maybe finding something that your Mum would really like to eat might help.
My mum has lost interest in everything she used to enjoy and isn't even watching tv anymore!
I don't know much about the dosage of the chemo so can't help there I am afraid although my friend's Mum is going through chemo too for a different type of cancer and they did lower her dose as her side effects were severe.

Deb

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

Re: Mum's diagnosis

Postby Sueoliver » Wed Jul 16, 2014 10:55 pm

Thanks for the reply Deb my mums main problem with food is she hates the creon tablets! She has become extremely fussy and mealtimes have taken over! I am convinced its psychological!
My mum is on fortnightly folfirinox chemo which I believe is very toxic! She didn't tell me why they are keeping her on a 20%reduced dose.
If she keeps losing weight she will not have the strength for this chemo. We have so many things to look forward to next year, her granddaughters 21st and graduation and her other granddaughters wedding. I hope the thought of these keep her motivated to get well.
I hope your mums scan is positive and the chemo helps her. This journey is tough to say the least!
Take care, Sue