Mum's diagnosis

[Guest]

Hi Sue,

I would say it is normal, unfortunately. My dad has a lot of days like that. It must be hard to deal with the fact that they have cancer, and especially that it is pancreatic cancer. To know what is happening to them must be just devastating. I think that somedays, they just want to shut themselves away from the world. My dad was worse at the beginning after diagnosis. He would say he didn't want anyone to see him, including me. He would get angry and then would be in tears. It is very hard to hear and see, as you know. Your mum has had a massive shock, and I cannot imagine how it would feel, or how she deals with it.

What I would say is just be there. Let her say how she is feeling. Make sure she knows she can let it all out to you. It hurts so much to hear a much loved parent so depressed, but I would rather he feel comfortable to say it to me, rather than keep it in. Keep calling your mum. Keep going round. Even if she tells you not to. It is just instinct to say that. I think they try to protect us when they do it, when really, all they want is for us to be there.

Take care Sue.

Leila xx

[LMD]

Hi again Sue...

Hopefully after the oncology appointment your mum will feel more positive..

I think Leila is right in what she says and the way your mum is feeling is fairly 'normal'... (It's so upsetting to see a parent like this though, I know). Try and stay strong for your mum. You aren't alone and keep posting on here. Thinking of you xxx

[Sueoliver]

Thank you everyone is so kind. I am an only child and am really close to my mum. My step mother was diagnosed with ureter cancer in March and has short term memory loss! My husband had a knee replacement op last Saturday! It is all just so horrible! My stepdad is 84 and this is so awful for him as well. He is a really lovely man.

I still can't believe this is happening. What I find so hard to understand is how someone can change so dramatically in a couple of weeks.

I will post on Thursday when we have seen the oncologist.

Sue x

[Guest]

I'm a only child too. Was always happy that way, until now. Sometimes wish I had someone else who could go round and see him. I have always been so close to my dad. Love him so very much, and I can't believe it is happening to my dad. I pray and pray that it, well, you know.......

I know how heart breaking this is. It must be really hard for you, to have other illnesses in your family also. It's hard to take your mind of one thing, to concentrate on another.

Good luck Thursday. I would advise you write any questions down, as they come onto your head. Take them with you on Thursday and make sure the oncologist answers them for you.

Leila xx

[Sueoliver]

Well I think I have read just about every post on this forum! Not very healthy I know!

Mum is seeing the oncologist tomorrow for her first appointment. I am filled with fear and dread so goodness knows how she is feeling. She is hardly eating anything now ...tiny amounts of jelly! She says she doesn't even like savoury food anymore.

Still no news from the McMillan nurses. Her GP came round to see her last week but she was in the hospital! He hasn't contacted her since!

Her anti sickness tablets make her very sleepy and she says she has no energy to do anything! She told me it took all her energy to have a shower yesterday!

Is this really all normal 3 weeks after diagnosis? I can't believe the shocking decline!

I will post after we have seen the oncologist tomorrow... If I can!

Sue x

[Nelsmum]

Hello Sue, obviously I don’t know your Mum but she may well be In shock, I know I was when I found out, I couldn’t tell anyone, didn’t want to speak about it. And I didn’t want to see anyone. Partly because of the reactions from other people, they were so sad and I felt guilty, weird I know, but that is how it felt, John, my husband told everyone except people at work which I did have to do. She may well feel better after seeing the oncologist and discussing options, I know I did but I was also lucky I did not have to wait as long as you and your Mum have. I sincerely hope it goes well for you and your Mum on Thursday.

Jane C

[Dollysdaughter]

Hi Sue, hope things start looking up a bit for you and your mum once some positive intervention/treatment happens. I am in a similar situation with my mum but a bit further down the line. Try to keep calm and take some time for yourself as well as your mum but I do know how hard that is,

Sara x

[Cathy]

Hi Sue

Best of luck with the oncologist.

I suggest going armed with a list of questions you might want to ask, a list of symptoms and a little book to make notes in.

Hope things are a bit clearer for you afterwards about a way forwards

Cathy xx

[Sueoliver]

The oncologist was very nice and very knowledgable didn't really have to ask many questions as he covered everything. Before the appointment I gave myself a good talking to and told myself I was there to support my mum and stepdad and keep it together! So what do I do break down in the consulting room! My mum and stepdad held it together well! The oncologist explained everything and then asked if she had been given a prognosis... Which is 8 - 12 months! He then went on to say it is different for all patients and he has a man who has had chemo for 3 years and they are keeping it at bay! Stay positive he said!

The oncologist decided she is fit enough to try Folfrifnox every 2 weeks at a slightly reduced 20% dose! He explained it is a toxic chemo. She has lost nearly 2 stone in weight and is very tired so I am hoping she will be ok with this chemo as it is her best chance.

I asked if they would scan her before treatment but he said no they will do that in 3 months and compare with her diagnosis scan then! Is that normal? What if it has spread?

My mum was great saying that this chemo would shrink it and then she would have it operated on and removed and then it would be gone! I am glad she thinks like that.

I am sure she is in for a rough time and I hope she can get through it.

Has anyone else experience of Folfrifnox? Is it ok?

Thankyou everyone for your replies I really appreciate it. Sue x

[MSH]

Hi Sue,

Just to clarify, your Mum's Folfirinox has presumably been reduced by 20%, so she'll be on 80% every two weeks which is still a very tough regimen: the initial study used a cut off point of 76 years or older.

http://www.nejm.org/doi/full/10.1056/NEJMoa1011923?viewType=Print&

The side effects can be very variable and individual, so you'll just have to see how she gets on, though I would suggest caution about the stent. One of the more common effects of the chemo is to reduce the white cells which protect the body against infection. Having a stent provides a common focus for infection, so much so that some authorities routinely give an injection such as Neulasta to boost the neutrophil count. You might want to ask your oncologist about this.

From what you say about your mother Folfirinox is the best treatment she could have, whether it has spread or not, and it is reasonable to have a scan at 3 months which is usually halfway through the treatment. She is right to hope that the chemo will allow surgery, this has happened in up to 24% of cases, and gives hope of a cure.

http://www.ncbi.nlm.nih.gov/pubmed/23955427

I hope she responds well to the treatment.

Mark

[Sueoliver]

Thank you Mark I have read the links. My mum is 76 so has just made it! I am really worried though that she may not be strong enough! She is very weak and being very sick(vomiting) at present. The weight is dropping off her.

This is just all so dreadful. Sue x

[Cathy]

Hi Sue

If you do a search on here you will find a lot about folfironox - a few of us have experience of it and, as Mark says, the scan being taken at 3 months is normal. Your Mum will have regular meets with the oncologist to see how she is feeling and may adjust the drugs accordingly as well as prescribe, if needed, any drugs to help with side effects.

I suggest that she keeps a diary (or someone on her behalf) any side effects she gets as that will be very helpful meeting the oncologist.

The main side effects my partner had was tingling (neuropathy) in fingers and feet (gloves might help) and fatigue. He also had a sore mouth (Niflam is good) and I gave him a chap stick for his lips. His appetite varied but generally was very good (steroids will help) and he put on weight over the course of his treatment.

Best of luck

Cathy xx

[LMD]

Hello Sue

Pleased to read the meeting with your mum's oncologist went ok and good to know that he is positive! Hope your mum is feeling better having met with him and you now know what the 'next step' is. I don't have any experience of the chemo your mum is going to have but there's lots on here about it ...

Thinking of you and hope you're ok x

[PCUK Nurse Jeni]

Hi Sue,

Is your mum taking the pancreatic enzymes now (creon)?

If not, she really needs to take these as otherwise, she will continue to lose weight rapidly.

Email us at support@pancreaticcancer.org.uk for more comprehensive information on these.

Kind regards,

Jeni, Support Team.

[Slewis7313]

Cathy, where did you get Niflam from? My mouth is becoming tender and the stuff I have is disgusting!

Steve

[Cathy]

Hi Steve

We got a prescription (it's prescription only) - I think it was from the oncologist but your GP can also prescribe.

So he took Nifflam oral rinse for mouth ulcers and a sore mouth and Nystan when he got oral thrush one time. Both were helpful. I also bought him some mouth ulcer pastels from Superdrug that he quite liked and bonjela.

I think it was the steroids that might have caused the oral thrush - a common side effect I think. You may not have that but it's something to be aware of - if your mouth and throat are sore and your mouth looks like it has white irregular spots in it this might be oral thrush. The Nystan did help.

He had a sore mouth for part of each cycle. Maybe for 2 - 4 days if memory serves me right.

Hope this helps

Cathy xx

[Sueoliver]

Hi Jeni the dietician explained to her how to take them so she has been since last Thursday. She is eating a little bit more each day and actually looked a little bit better today! She was moaning at her husband so that is a good sign!!

Thankyou for your support.

Sue

[J_T]

We got Difflam given to us when Ray went for chemo.

[Sueoliver]

Just a quick update on our progress. Mum is taking the creons regularly now and they are definitely helping. She has her consultation on the 2nd July, line being put in on 3rd and first chemo session on 4th.

Am I allowed to ask if anyone else on here attends {name removed - moderator} cancer unit in ? Does anyone know if they have a support group?

Sue x

[Nelsmum]

That is good news Sue, hopefully with the creon her confidence will build up and she will be able to eat more, or more often. You can't underestimate the pyschological trauma not being able to eat has when you know you need to. Onward and upward for you Mum. John says to me 'well done' when I eat a biggish meal, like a kid, it is encouraging!

[Cathy]

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]

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

[princesspentium]

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]

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]

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