Mum's diagnosis

[Vanessa]

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]

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]

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]

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]

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

Edited July 6, 2014 by brodders

[Sueoliver]

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]

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]

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]

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]

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

[deb3927]

I only learned of the creon tablets on here, I will ask my mum to ask about them if her weight is still coming down next week.

I do hope your mum gets to see the graduation and wedding next year! I have heard of people hanging on against the odds when they have something to wait for! Fingers crossed for her!

My mum couldn't have her chemo today as her platelets were down and next week is her week off so she will have a 2 week rest. I am hoping this will give her a little boost as she has been so tired this past week and lost all interest in everything! I live abroad so I call everyday to find out how she is etc then give her my news and lately I have been getting inappropriate responses (not rude or anything, just wrong) as though she has switched off and is just making noises where she thinks they should be! I then take the hint and cut the call short as I assume she is just too tired for conversation! She has changed so much in such a short time, when she first started on the chemo I couldn't get a word in! You are so right, this is such a tough journey!

Debx

[Sueoliver]

My mum is having her 3rd folfirinox on Friday. She has coped well with the first 2 but they were both reduced by 20%. This one is going to be stronger.

She is weak though and seems to sleep more going to lay down through out the day. My one concern is that she never goes out. She hasn't really been anywhere since diagnosis in May! Is this normal? Has anyone else experienced this? She used to be out all the time. She hasn't even been to my house!

Gosh this is so hard!

Sue

[J_T]

Hope your mum's next session goes well.

With regards to not going out, my husband was like this after the folfirinox was stopped. He was very tired all the time, developed clots in both legs and didn't have the energy for anything, watching tv even. Its very hard to see but there was no point chivvying him along because we could see how tired and ill he was.

Its a bit different for you mum because she's still having treatment and you may find she picks up a bit after this session and starts to feel well again. I hope so.

Julia

[brodders]

Dear Sue,

I have removed a post in the past for being too honest. All I can say everyone is different and it's great that your mum is having chemotherapy - hopefully in a few weeks she will get stronger. Just enjoy her. Cate xx

[Sueoliver]

Hi Cate I don't think honesty hurts especially under these circumstances we are all going through! It is all so emotional! Mum went for blood tests today and her chemo has been delayed a week as her bloods aren't right!

Thankyou Julia for your reply you are right there is no point chivvying them along! Hopefully when mums bloods are back to normal she will have more energy.

Vanessa if you are reading this how is your mum? How are you?

Sue x

[Ruthos1]

Hi to you all,

I first posted on this forum in January I if remember rightly.

All of your stories bare a huge resemblance to mine.

My mum is also 75.

She was diagnosed on Xmas eve 2013 with advanced PC despite three biopsies coming back inconclusive.Her diagnosis was then changed to chronic pancreatitis. A repeat CT scan was performed a few months after this '2nd' diagnosis which revealed increased inflammation around the head of the pancreas, a laparoscopy was performed and pancreatic cancer was confirmed two weeks ago.

I live in Corfu but have been coming backwards and forwards to England every 10 days to be with my mum.

She has been amazing , remains cheerful and tries to enjoy every day ( she is on creon , which have helped with her weight loss and takes morphine for the pain, which is getting steadily worse). We, however had our first appointment with the oncologist today and I think 'things really hit home'.

We saw a lovely specialist nurse, who has referred mum to a dietician and Macmillan nurses will be in touch, although she is a little reluctant to have 'visitors' as she is a private person.

I am due to fly back to Corfu on Saturday but will return within a week/10 days.

I just wanted to say that I have read all of you messages on here and my heart goes out to you all, I also feel that I have reached the point where I feel the need to be 'in contact' with other people going through similar now.

When I think of the forthcoming months it fills me with fear and dread.

My thoughts are with you all.

Ruth

X

[Didge]

Ruth, I think the fear dread is something which we are all familiar with whatever the stage we're at. My partner was operable but now has pain in a suspicious place so is in the process of having tests/scans. The truth is that this cancer has such a low survival rate that it is very hard sometimes to cope with the likely future. I do try to do what I tell everyone else to, and live in the day and not the future. But it is really hard! As you know there are so many people here to support you whenever you need it. We are all living in some kind of nightmare. Thinking of everyone here too, whether sufferers or family/friends.

Didge x

[Sueoliver]

Hi Ruth I think it helps to beable to post on here. At least we all understand each other. I went round my mum's the other day and just stood there and burst into tears. She was so shocked asking what on earth was the matter!! I said to her I just felt so sad! She replied that she was ok and she would survive! That told me!

I am also dreading the future but I do try to live in the day. Sometimes it is just impossible.

At least we can all support each other somehow!

Sue x

[brodders]

Hi Sue,

Please try not to think about it - its so very hard I know. I wasn't nearly as brave as you - I only joined the forum after my precious mum had died. Nothing can prepare you but please enjoy the present if you can. My darling mum said to me when I cried -' please don't be sad I am only sad if you are its life'. You will hopefully have many more months together. Cate XXXXXXXXXXXXXXXXXXXXXXXXX.

[Ruthos1]

Hi Sue,

Your mum sounds so brave like my mum and it makes it all the more saddening and very difficult.

I will take the advice given and take each day at a time and not look too far into the future.

Am still so scared, but must be strong as my mum only really gets upset when she sees me upset.

Take care ,

Ruth

xx

[Sueoliver]

Mum has had 3 sessions of chemo now but this time it has really taken it out of her. She hasn't eaten for 3 days as she keeps being sick. She is hardly drinking anything either. I keep telling her to drink water but she only has a few sips!

When she had her chemo they said one part wasn't prescribed the one in the syringe! Nobody seemed to know why!

This is truly terrible and I can't bear seeing her like this.

I can't see any improvement at all with this folfirinox chemo she actually seems worse!

Sue x

[SueH]

Hi Sue

Sorry to hear you Mum is not doing well. Does she take Emend for the sickness, you take one before the chemo and then one for the next two days. It was the only thing that stopped my husbands sickness when he was on the fox. Re the syringe of chemo ( the bolus). My husbands oncologist said that this was the part that could bring down the white blood cell counts the most. So if his bloods were getting low they would reduce it for him. Maybe her white blood cell count was getting low? I would ask the doctor next time you see him if you are concerned.

Hope your mum feels better soon. If you are worried call out the doctor. If she becomes dehydrated she will feel worse.

It is awful seeing someone you love go through this.

best wishes Sue

[Sueoliver]

Thankyou Sue that explains it as they delayed her chemo by 1 week as her white blood cell count was low. She is going to have injections for 5 days for this. I will see how she is today and ask her if she was prescribed Emend.

Thankyou. Sue

[Slewis7313]

For information, I have Emend for days 1 to 3 and the cell boosting jabs for days 5 - 9 (inclusive) for EVERY cycle.

Steve

X

[Sueoliver]

Thankyou Steve I will pass that information on. I hope you are doing well. Sue x